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rohrer01
05-16-2010, 12:06 AM
I'm afraid to put the disk into my computer for fear of ruining it. It has a dicom format, which, I'm completely computer illiterate and don't know if it will work in my machine. I'm assuming dicom is a special program that specialized for medical software? If, so, I know I don't have the program. Can anyone help, since so many of you post your images on here?

LindaRacine
05-16-2010, 07:01 PM
Most discs come with the software to view the images.

Pooka1
05-16-2010, 07:11 PM
Yes I agree with what Linda said. I have my horse's radiographs on disk and that came with a self-extracting program to read them. I forget the name of the program but I'm pretty sure it isn't what you are dealing with.

rohrer01
05-16-2010, 08:08 PM
I only have the MRI's right now, still waiting on UW-Health to send my X-rays. I guess I'll pop it in and see what happens. :p

rohrer01
05-17-2010, 12:54 AM
Okay, they wouldn't even load in my "old" computer. It said it was a blank disk. My new laptop, however, they loaded beautifully. I just have to figure out how to save them here since the options are all different than the usual options. My doctor didn't tell me the "whole" truth about my neck MRI. I have a bone spur on C-4/5 and narrowing of the nerve root on the left. I looked it up and it goes right to my left hand that has been going numb. It controls mostly from the elbow down and some shoulder and bicep, which is EXACTLY the symptoms I have been having. This is probably why "they", whoever they is, cancelled my appointment with the PA-C and wanted me to see only a doctor. I'm assuming "they" is my neurosurgeon. Now that I know what that problem is, maybe there is something that can be done, like was done in my lumbar spine that had the same problem. I'll bet the cervical spine is a bit more risky to work on, though. I do know however, that my cervical spine would not be wearing out so soon if they would just fix the scoliosis. There is a lot of tension holding my head upright. When I get my X-rays, I'll try to post them here. MRI's are a lot more difficult to look at for the untrained eye, as I am finding out. Especially these cervical ones. I need to figure out a way to really blow them up large. But then I don't have my glasses on. I also noticed, but nothing was said in the report, that I have no lordosis in my neck. It's completely FLAT. I'm assuming scoli has something to do with this, too? Oh, well. At least it gives me a little bit of hope that they can help me with my neck. Then all I will have left is my thoracic pain. Only scoli surgery can help there. :( Thanks all for "listening" to my runon paragraph (I'm being gramatically lazy tonight). :)

LindaRacine
05-17-2010, 01:09 PM
I also noticed, but nothing was said in the report, that I have no lordosis in my neck. It's completely FLAT. I'm assuming scoli has something to do with this, too? Oh, well.
You can't judge lordosis from images taken in the prone or supine position, because the spine straightens significantly when we lie down.

--Linda

skevimc
05-17-2010, 01:21 PM
I'm afraid to put the disk into my computer for fear of ruining it. It has a dicom format, which, I'm completely computer illiterate and don't know if it will work in my machine. I'm assuming dicom is a special program that specialized for medical software? If, so, I know I don't have the program. Can anyone help, since so many of you post your images on here?

Some versions of photoshop can open and convert DICOM into another image type. If not, there are online tools that can do this. Using either an online trial version or an open source version. Do a search for "dicom to jpg conversion open source." Lot's of stuff available if you are interested in doing this.

rohrer01
05-18-2010, 12:33 AM
You can't judge lordosis from images taken in the prone or supine position, because the spine straightens significantly when we lie down.

--Linda

Thanks for the info. That makes me feel a lot better.:)

rohrer01
05-18-2010, 12:36 AM
Some versions of photoshop can open and convert DICOM into another image type. If not, there are online tools that can do this. Using either an online trial version or an open source version. Do a search for "dicom to jpg conversion open source." Lot's of stuff available if you are interested in doing this.

Well I got it opened and it worked. I actually found out I can zoom in and out. However when I choose one frame (it will have between like 13 and 21 slices) I can't get back to the "main menu". I'll figure it out.;) Thanks for the info, too!

rohrer01
05-18-2010, 07:41 PM
Okay, help me out here, someone. I have my X-rays from five years ago and this year. I have managed to clip off the undesirable parts and save them as jpegs. So now I need to know how to make a like to share them. I notice some people go through facebook, which I do have an account, but I want to keep things private, if you can understand that. I only want to share the images. Any advice?

rohrer01
05-18-2010, 10:27 PM
I wanted to see if this works from my computer. Just messing around. I'm so technologically illiterate that it's not even funny. I really am a college graduate! From 2003 no less! I don't know how I survived.:o

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titaniumed
05-18-2010, 11:06 PM
We knew all along you would pull through with the goods! He he

Wow! Your neck! and such a high curve. Your low end looks great.

Maybe Linda has seen x-rays similar to this?

I'm just wondering how high they would have to go?

Ed

rohrer01
05-18-2010, 11:22 PM
My doc said the lowest he could go would be T2. That's part of the reason he won't do it for pain. He is convinced that he will cause more pain and that I will feel the rods sticking out through the skin in my neck. I have since found out that I have a bone spur on C4-5 and a pinched left nerve root at that area. I'm sure that is contributing significantly to the neck pain portion. It just doesn't explain my thoracic pain. The only thing there is scoliosis. I told you it was high!!:eek:

dailystrength
05-19-2010, 08:45 AM
Not bad, Rohrer! Thanks for posting those! Your 2010 looks so much better and more comfortable in your neck area - your head angle is so much straighter- you must be doing something right.

rohrer01
05-19-2010, 08:56 AM
Not bad, Rohrer! Thanks for posting those! Your 2010 looks so much better and more comfortable in your neck area - your head angle is so much straighter- you must be doing something right.

My 2010 is WORSE. It has progressed 6* on both curves and is more painful than ever. Balance can be deceiving. My neck hurts so badly that I can never get the last bit out of a glass or a soda can. It hurts to turn my head in any direction (some days better than others - and of course, when I go to the doc, it's ALWAYS a good day). Some days are better than others. You can see on my 2005 X-ray that my shoulders are completely out of balance, but the pain wasn't AS severe. That's why I thought about working on trying to straighten out that compensatory curve. Although, now I have developed arthritis of the neck, so don't think that would be a good idea. I have upper back spasm underneath my scapula, so of course, they are very hard to rub out. I also get dislocations of my ribs at my sternum, where you can actually see the rib sticking up. Fully dressed, no one would even know I have scoliosis, but believe me, it hurts like the dickens. :(

But thanks for the compliment, it does "look" balanced. When you go through Schroth, don't let that fool you. Curve increases hurt. Best of wishes in your upcoming training. :)

dailystrength
05-19-2010, 09:27 AM
My 2010 is WORSE. It has progressed 6* on both curves and is more painful than ever. Balance can be deceiving. My neck hurts so badly that I can never get the last bit out of a glass or a soda can. It hurts to turn my head in any direction (some days better than others - and of course, when I go to the doc, it's ALWAYS a good day). Some days are better than others. You can see on my 2005 X-ray that my shoulders are completely out of balance, but the pain wasn't AS severe. That's why I thought about working on trying to straighten out that compensatory curve. Although, now I have developed arthritis of the neck, so don't think that would be a good idea. I have upper back spasm underneath my scapula, so of course, they are very hard to rub out. I also get dislocations of my ribs at my sternum, where you can actually see the rib sticking up. Fully dressed, no one would even know I have scoliosis, but believe me, it hurts like the dickens. :(

But thanks for the compliment, it does "look" balanced. When you go through Schroth, don't let that fool you. Curve increases hurt. Best of wishes in your upcoming training. :)

I am so sorry to hear that :(. About Schroth, I may not go after all unless the therapist can find a way for my insurance to cover more of it - $1000 out of pocket plus all the materials and travel expense is a lot for me. We all kind of wonder why it has to be so expensive and not common knowledge but rather exclusive. Why aren't these "amazing" methods better known? This is where it starts to feel like I'm a money-maker for someone-- but I'm off topic. Anyway, the Curves book is excellent and she does share her wealth of research with everyone else who suffers, for $12.

rohrer01
05-19-2010, 04:13 PM
I am so sorry to hear that :(. About Schroth, I may not go after all unless the therapist can find a way for my insurance to cover more of it - $1000 out of pocket plus all the materials and travel expense is a lot for me. We all kind of wonder why it has to be so expensive and not common knowledge but rather exclusive. Why aren't these "amazing" methods better known? This is where it starts to feel like I'm a money-maker for someone-- but I'm off topic. Anyway, the Curves book is excellent and she does share her wealth of research with everyone else who suffers, for $12.

Some point was made about Schroth by Skevimc when he visited the facility that they had so many clients and so many resources, yet they didn't participate in any research. It makes one wonder why? This (the fact that you can't go) may save you rather than cure you. If you are still interested in the Schroth techniques, you can still buy the book as you recommended to me. Try some of the methods and see if they help. $50 is a LOT cheaper than $1000! Why don't you get in touch with some other Schroth clients and see what their outcomes were. Keep well and best wishes for your future.

dailystrength
05-19-2010, 04:30 PM
Thanks, Rohrer- I do have the book, I will try to plow through it. It's a headfull! Thanks for your suggestion to find some who have done Schroth. I contacted one from the forum but she's not responded.

LindaRacine
05-19-2010, 10:38 PM
Not bad, Rohrer! Thanks for posting those! Your 2010 looks so much better and more comfortable in your neck area - your head angle is so much straighter- you must be doing something right.

You can't see the head in the 2010 film, so it's impossible to measure the cervical curve or judge progression.

Rohrer... have you mentioned who your surgeon is? If not, would you? I'm trying to judge if another opinion might be worthwhile.

--Linda

dailystrength
05-20-2010, 08:58 AM
Yes, Linda. Sorry - I meant shoulders - her shoulders appeared more even, but appearances do not match pain level I see. The thoracic curve does show the progression. Thank you for clarifying.

rohrer01
05-20-2010, 11:25 AM
You can't see the head in the 2010 film, so it's impossible to measure the cervical curve or judge progression.

Rohrer... have you mentioned who your surgeon is? If not, would you? I'm trying to judge if another opinion might be worthwhile.

--Linda

Dr. Tribus.
I am getting a second opinion because he told me to come back if pain got worse. It did, where I had to be put on heavy medication. He wasn't listening to a word I said and told me I had three problems.
1. A pain problem
2. A drug problem
3. Scoliosis

Then he said nothing was scoliosis related and that he couldn't help me. He had no suggestions as to where to go to get help. Just criticism for what the other doctors were trying to do for me, saying "I can't believe they are treating you without a diagnosis!"

I think I explained more on another post. I was literally left in the room crying. Not a nice experience AT ALL.

I'm sending the films to Dr. Hey in N.C. for a second opinion.

rohrer01
05-20-2010, 11:27 AM
No one has EVER measured my cervical curve. Just the main thoracic and now that I have developed a compensatory curve they measure it. I had to ask, though, and then the nurse wouldn't tell me. I only know what it is because my doctor got the report.

skevimc
05-20-2010, 12:40 PM
Dr. Tribus.
I am getting a second opinion because he told me to come back if pain got worse. It did, where I had to be put on heavy medication. He wasn't listening to a word I said and told me I had three problems.
1. A pain problem
2. A drug problem
3. Scoliosis

Then he said nothing was scoliosis related and that he couldn't help me. He had no suggestions as to where to go to get help. Just criticism for what the other doctors were trying to do for me, saying "I can't believe they are treating you without a diagnosis!"

I think I explained more on another post. I was literally left in the room crying. Not a nice experience AT ALL.

I'm sending the films to Dr. Hey in N.C. for a second opinion.

What a horrible experience. :eek:

It seems like he may be partially correct though (I'm not criticizing you I have a point to that statement. read on. :) ). It's possible that previous doctors have just tried to treat the pain and not the purpose for the pain. This puts you in a bad position because it doesn't address the problem and can make you resistant/dependent on the drugs. There is quite a bit of pain research out there but it is still relatively new because of the "drug problem" issue. Pain research is kind of like fibromyalgia research. Many doctors think everything is just in your head. And in one sense they are correct. But that doesn't make the pain any less real. What can happen, and this is particularly true in women, is that chronic pain can cause the nerve fibers to remain active, even when the painful stimulus is removed. So even if you 'fix' what is wrong, the pain fibers will still translate pain to your brain. Of course, it sounds like the source of your pain hasn't even been addressed, but even if it had, you have potentially reached a point where the pain is cycling on itself. Pain begets more pain and there are no outward symptoms to explain where the pain is coming from. So doctors either prescribe drugs just to get you out the door or they are overly critical. Neither of these things does any good.

Have you thought about or looked into going to a pain clinic? I'd see a scoli doc and then look at a pain clinic. You're not crazy. Your pain is real and there are things that can be done about it. It might just take some time to find the right place and the right type of place.

rohrer01
05-20-2010, 04:05 PM
What a horrible experience. :eek:

It seems like he may be partially correct though (I'm not criticizing you I have a point to that statement. read on. :) ). It's possible that previous doctors have just tried to treat the pain and not the purpose for the pain. This puts you in a bad position because it doesn't address the problem and can make you resistant/dependent on the drugs. There is quite a bit of pain research out there but it is still relatively new because of the "drug problem" issue. Pain research is kind of like fibromyalgia research. Many doctors think everything is just in your head. And in one sense they are correct. But that doesn't make the pain any less real. What can happen, and this is particularly true in women, is that chronic pain can cause the nerve fibers to remain active, even when the painful stimulus is removed. So even if you 'fix' what is wrong, the pain fibers will still translate pain to your brain. Of course, it sounds like the source of your pain hasn't even been addressed, but even if it had, you have potentially reached a point where the pain is cycling on itself. Pain begets more pain and there are no outward symptoms to explain where the pain is coming from. So doctors either prescribe drugs just to get you out the door or they are overly critical. Neither of these things does any good.

Have you thought about or looked into going to a pain clinic? I'd see a scoli doc and then look at a pain clinic. You're not crazy. Your pain is real and there are things that can be done about it. It might just take some time to find the right place and the right type of place.

I've been to a pain clinic twice. This last time, they were able to address my lower back pain. It turned out to be a pinched nerve and degenerative disc disease in L5-S1. It looked pretty benign on the MRI, so no one addressed the issue because it appears mild. I got an epidural injection from the pain doc. It made a big difference in my lower back pain. Then he wanted me to have an intrathecal catheter placed into about the T7 region to give morphine or some other drug. I am not happy with that because I said it is still drugs. I want OFF the drugs, but agreed to go to the pain psychologist. She basically told me that the intrathecal catheter was a "treatment of last resort" when surgery wasn't going to ever be an option and the spine was stable. I told her I am looking in to surgery and my spine is progressive. So she said, "Do you want it?" and I say to her, "According to what you just said, I don't meet the criteria, so no." So now I don't even know if I'll see the pain doc again because he was pushing it so much.

I had a cervical MRI that shows a bone spur and a narrowed nerve root opening on the left at the level C4-5, the nerve leading to my left arm that keeps hurting and going numb in my fingers (it's mild of course, but so was the lumbar that was causing all that pain). I got a call the same day as my MRI from my neurosurgeon's nurse cancelling my appointment to see a PA-C in Physical Medicine. He said he didn't want me seen by a PA-C and that he wanted me evaluated by a doctor. So that could legitimately be where the neck pain is coming from. If they can fix it, great!

Then all I would be left with is the thoracic pain and muscle spasms that I get under my scapula's, pain in the sternum from what appears to be dislocated ribs (the bumps appear when the sternum hurts, then dissapear and it doesn't hurt any more). I also have muscle spasms between the ribs making it very difficult to breathe. I also get pain in the spine itself. That one's a bit harder to describe.

As far as pain, I did discuss fibromyagia with Dr. Tribus. I told him that it was my opinion that it was a name given to pain of unknown origin and he agreed with me. I said my GP was reluctant to label me, as he said he would be, also. He told me to look on the internet to see what I could find as far as disorders that could be causing my pain. I told him, "Why, so I can become a hypochondriac?" He did then say that he liked how I was thinking.

The pain cycle you describe is very real. There was one other time when I was on long term narcotics. At that time I didn't have as much pain to deal with and I told the doctor that I felt the fentanyl was too much so he "lowered me to oxycontin". I had that and hydrocodone, which I eventually developed an allergy to, so had to switch to percocet. I eventually felt that the drugs were what was making me hurt and I took myself off of them. I did it way too fast and got pretty sick. Then I would only take the percocet as needed, which would be about 100 pills per year on average. I would only use them during flare ups.

I have already started "weaning" off the meds. My lower back pain is all but gone, and my muscle spasms have decreased dramatically since my last chiropractor's visit (just tissue massage under the scapula) a couple of weeks ago. They are still there, just not as intense.

My doc wants me on klonopin, which is a huge no, no for fertility, which I didn't find out until I lost all 4 of my pregnancies. It seems we keep going round and round about this drug because it does seem to help. But it's not worth miscarriages to me. So this is the first one I'm weaning off of.

With all that said, maybe I do have a "drug problem". But I have only been on the really heavy stuff for a couple of months and it's making me really sick. I've lost 20 pounds (I only weigh 115# and am 5' 7"), am nauseated all the time and can't eat and I'm so groggy and the "pain" (I think drug induced pain) is still there. I have an appointment next week with my GP to discuss all this.

I would rather be on skelaxin, even though it didn't seem to help last time I tried it, maybe it would this time. It is a category B for pregnancy - which is still a goal of me and hubby. That's partly why I'm so upset. I'm 41 and time is running out.

They, meaning just about all the doctors I see want me on narcotics because they don't know what else to do. My pain doctor flat out told me when I told him my goal was to me drug free that, "That's a noble goal, but unlikely with the degree of pathology that you have." How encouraging is that? Why won't he give me botox injections for the spasms? Other's on here swear by them.

IF I'm going to need surgery, which it looks that way by the short time I have progressed (5* in 2 years - and all of a sudden after being stable for 20 years), why won't they just do the surgery while I'm in a good position. I have insurance, my children are older, I am still "young" and healthy enough. I don't want to wait until I develop other health problems in my 50's or 60's.

I truly believe it is the curve that is causing the thoracic pain. I've had it since I was 8 years old and it got bad at 12 and excruciating at 16. It comes in what I call "episodes". Scoliosis doctor's are "trained" to believe that scoliosis doesn't hurt. Well, maybe in some people it doesn't. But in me it does. I managed on NSAIDS until I was 29 years old, but the episodes keep getting worse and are extremely debilitating and unpredictable.

So that's my two cents worth. I am at a place in my life for the first time that I am emotionally ready to do this. They would have done it at 39* as a teenager, but fear overtook me. It overtook me at age 29 (but I was willing to go along with it and doc said NO) and it, being fear, overtook me at age 36when Dr. Tribus actually offered me the surgery for my pain and I said, "No way!".

I almost feel like he is punishing me for the medications that I am on. I could be wrong. I have heard that pain control during recovery is very difficult if a person has been on long term pain meds. So no offense taken. I didn't even take offense at Dr. Tribus telling me I had a drug problem until I thought about it for a while.

I always viewed people with drug problems as drug seekers. I am NOT a drug seeker. Right now it is my only option, and when one gets desperate enough, you cave. Pain ruins lives, as do drugs. You just have to strike the balance of which will ruin your life worse. Right now, I feel that the "episode" is passing (as of today, anyway - Saturday I couldn't get out of bed because I hurt so badly). Therfore, I need to get off the meds. It's a terrible process that I'm not looking forward to. :( The drugs do NOT fit in to the plans that I have for my life. So in that sense, I guess I DO have a drug problem. Maybe that's what Dr. Tribus meant, because I told him my goals and that drugs didn't fit into the plans.

I have just seen people on here with smaller curves than mine come out with such good correction and say they are pain free. If I don't have the surgery, then I can't say I tried everything. My doctors all agree that they want me to have it (my GP and neurosurgeon - NOT the pain specialist). The pain specialist doesn't count in my mind because he wants to do a procedure that I don't even qualify for. That makes my trust level go WAY down.

Well, you've heard it all. I'm desperate to be off drugs and have the surgery and still be off drugs so I can have a baby, or at least try without the guilt that I caused it's demise. That's where I am at. Sorry for such a LONG post.:o

LindaRacine
05-20-2010, 10:00 PM
I have to agree with Kevin. This may be something entirely different than a spine problem.

When we look at CT scans of scoliosis patients who have pain, there's almost always a reason for the pain. I don't know why there's a small percentage of people who have scoliosis, and who have pain for which no cause can be found. But, it's certainly not the curve. If scoliosis causes pain, what's wrong with the vast majority of kids, and adult patients with smaller curves who have no pain?

It's just an educated guess, but I'm betting that a long scoliosis fusion would do nothing to relieve your pain. If it were me, I'd probably go for a small surgery to remove the bone spur and decompress the nerve (if you can find a doctor who thinks that's what's causing the pain in the first place). If that doesn't work, there's always bigger surgeries. But, if you have a big surgery now, and it doesn't relieve your pain, where you gonna go from there?

--Linda

rohrer01
05-20-2010, 11:59 PM
I have to agree with Kevin. This may be something entirely different than a spine problem.

When we look at CT scans of scoliosis patients who have pain, there's almost always a reason for the pain. I don't know why there's a small percentage of people who have scoliosis, and who have pain for which no cause can be found. But, it's certainly not the curve. If scoliosis causes pain, what's wrong with the vast majority of kids, and adult patients with smaller curves who have no pain?

It's just an educated guess, but I'm betting that a long scoliosis fusion would do nothing to relieve your pain. If it were me, I'd probably go for a small surgery to remove the bone spur and decompress the nerve (if you can find a doctor who thinks that's what's causing the pain in the first place). If that doesn't work, there's always bigger surgeries. But, if you have a big surgery now, and it doesn't relieve your pain, where you gonna go from there?

--Linda

This is true. The scoliosis surgery is a permanent decision. I think the upper neck pain I am having IS coming from the bone spur and compressed nerve. I have had upper thoracic pain since I was 8, though(I remember laying on my right side and curling up into a ball to stretch. Then I felt better.). Then lower neck and upper thoracic pain since 12. By the age of 16 I started having episodes that were debilitating, not being able to move and especially not able to turn my head. I had these symptoms before the bone spur thing ever developed. When I was 16 or 17 I asked one of the scoliosis doctors at Phoenix Children's Hospital why I hurt, and he said it was probably arthritic in nature. I have had many tests done and no one has ever said I had arthritis of the thoracic spine. So if they can't find anything else wrong, what else could it be? I read on here so many others that are in pain from their scoliosis. It doesn't appear all that rare to me. My neice has scoliosis and also is in terrible pain from it. If it stems from the spine????

I have come up with my withdrawal plan. I think if they can fix the neck (I hope) and the lumbar is taken care of for now, I can manage. Right now the muscle spasms under the scapulae is what is causing me the most trouble thoracicly. The chiropractor did some massage that gave me some relief from that. Other than that, these upper back episodes are unpredictable, but SEVERE when they happen, but they are fairly rare. I always ache, but I can live with that.

I thought I would get opinions from 3 scoli surgeons and just go with what 2 out of 3 say. OR if I can get off the meds completely and continue with me and hubby's plan, then I'll just wait until it progresses to over 50. I really think that high and tight that over 50 is pushing it, but maybe I'm wrong. Thanks for all the advice. It really does help.:)

rohrer01
05-21-2010, 12:15 AM
Maybe those of us with scoli pain just have more sensitive nerves? My degenerative disc disease is considered very mild, but the pain it caused was very severe (I needed help with daily tasks and couldn't even lift the toilet seat!). I think they need to do some studies and find out why some and not others. It sure makes it difficult for those of us with pain to get any help, though. I absolutely hate being on these drugs, and it is all there is to offer. That is very frustrating indeed. Maybe it is the location of the curve or the way the spine is twisted. It may be due to the nature of being a nervous system disorder. Not everyone with the same "disease" no matter what it is presents exactly the same. I wish I had the answers, believe me! No one seems to have the answers, and no one seems to care to find out why. So basically for those of us in the minority group, it really stinks!:(

Ogilvie's study found I think it was 53 markers, right? Maybe there are some of us that have a different mutation that causes an overproduction of the neurotransmitters in the spine that transmit pain signals. Who knows?

rohrer01
05-21-2010, 12:31 AM
Oh, and my doctor's WON'T do a CT scan. Dr. Tribus recommended CT's twice and my doc's opted for MRI's. Dr. Tribus said you can see things on a CT that you can't see on an MRI. I'm not crazy about the radiation exposure, and suppose that's why they won't do it. But I can't have Dr. Tribus order it because then my insurance won't pay for it. He is out-of-network.

rohrer01
05-23-2010, 12:20 AM
I am now off of what I consider to be the most dangerous drug for me, klonopin. I was taking 3 per day, then weaned to 2 per day for a long time, then 1 only at night. Tonight is my first night without it, so wish me well! I have a flulike bug and am sick anyway. I took soma instead. I am allowed one per day. I thought I would take it at night for a while, then start taking melatonin for sleep.

Here is the list of drugs that I need to wean from still:

fentanyl patch
percocet
soma

Any advice as to which would be best to start with would be appreciated. I am thinking the fentanyl. I change the patch every other day. My plan is to wear the patch for 3 days, then ask for a 25mcg dose every other day. Then step down to 3 days, then quit altogether.

The next drug in line to go is the soma. I'm going to ask for a script of skelaxin instead, even though I have had poor success with this in the past, it is probably better than nothing and is only a category "B" for pregnancy, so is safe.

The last to go is percocet, although I would like to keep it on hand as a rescue drug, as I KNOW from experience that I need a rescue to keep me out of the ER. Believe it or not, percocet is only a category "B" in early pregnancy, as the pregnancy progresses the category goes up due to it's addictive nature on the fetus. It is the ONLY narcotic that I can find that is in the "safe" category for pregnancy.

I have already implemented asking hubby to massage and put pressure on my spasmed muscles. He did this tonight and brought my pain down from about a 6 to a 4, so it really does help.

Finally, I will keep up my daily, or near daily walking routine and maybe invest in the "Curves, Twists and Bends" book that so many are raving about. Maybe there will be some stretches or exercises in there that can help keep my pain under control.

I have accepted the fact that pain has always been and always will be a part of my life, but I want to handle it in a healthier way. Any suggestions to the drug withdrawal plan are certainly welcome. If you read this, thanks for taking the time to do so.:)

Best of well wishes to all!

rohrer01
12-03-2011, 08:33 PM
I wanted to see if this works from my computer. Just messing around. I'm so technologically illiterate that it's not even funny. I really am a college graduate! From 2003 no less! I don't know how I survived.:o

650

651

I finally got around to getting my x-rays from March. I can't believe it has been that long. My report says that the lower curve has progressed. When I measure them, they both have progressed, but the lower curve is catching up very quickly to the upper curve. I'm afraid it will bypass it in a matter of a couple more years. The report also said I have "negative saggital balance". I'm assuming that is a bad thing and I am out of balance. PLEASE correct me if I'm wrong. You all can compare for yourselves. The progression isn't tremendous, but it's there and it's only 12 months between the last two films.

rohrer01
12-04-2011, 09:41 PM
Is it just me, or does my L3/L4 disc look wedged in the 2010 film? I compared it to the other ones and didn't see any wedging on them. I'm sure it's not a big deal as I'm not having a tremendous amount of lower back pain or at least no more than most people my age complain of. Just an occaisional ache. I haven't had to have an epidural injection for a long time and don't feel the need to at all as my lower back is really good now. I just wanted some input. Thanks. I think I will look at the side views to see if I can see a difference there (I don't post those on here).

green m&m
12-13-2011, 07:52 PM
rohrer01,

I think for disk wedging or really bulging to cause pain and spinal nerve root pinching itíd have to be significant. Yours donít look that bad to my eyes, maybe someone else can comment on it.

Attached picture shows what the apex of my curve looks like, I actually donít have major pain issues, or rather paint doesnít seem to match what my scans show from the misshapened vertebrae which has caused my discs to undergo thinning/bulging. The image is from MRI, which is why everything is seen so clear.

jrnyc
12-13-2011, 09:12 PM
rohr, any chance you can see another pain doc who uses botox and who takes your insurance
or is in your insurance network....?
i think i mentioned to you that i have not met pain docs, unless they are also surgeons, who are in favor of
fusion surgery for scoliosis, so what you say about your pain doc does not surprise me...

hope you feel better...
jess

rohrer01
12-13-2011, 10:01 PM
rohrer01,

I think for disk wedging or really bulging to cause pain and spinal nerve root pinching itíd have to be significant. Yours donít look that bad to my eyes, maybe someone else can comment on it.

Attached picture shows what the apex of my curve looks like, I actually donít have major pain issues, or rather paint doesnít seem to match what my scans show from the misshapened vertebrae which has caused my discs to undergo thinning/bulging. The image is from MRI, which is why everything is seen so clear.

Thanks for responding. It looks like you have a very nasty spondolisthesis going on there along with that wedged disc. It looks like bone on bone. You are saying it doesn't hurt all that bad? Are you getting surgery? I hope all goes well with you and you can find a way to stop your progression so you aren't in a tremendous amount of pain.

rohrer01
12-13-2011, 10:08 PM
rohr, any chance you can see another pain doc who uses botox and who takes your insurance
or is in your insurance network....?
i think i mentioned to you that i have not met pain docs, unless they are also surgeons, who are in favor of
fusion surgery for scoliosis, so what you say about your pain doc does not surprise me...

hope you feel better...
jess

I'm on a stupid HMO. That's why I can't even get a second opinion from a scoli doc. My physiatrist is working on trying to get botox authorized for my headaches. I have to try and fail every other treatment for my insurance to pay. I don't think he wants to do my T-spine since that is where all the problems are. There was more progression in just a years time. Whoever it was that took the measurements this time WAY undermeasured my curves. He did note in the report that the lower curve had progressed. My doc doesn't want to paralyze any muscles for fear of causing further collapse. We'll see about the headaches, though. There's a risk of getting droopy neck if I accidentally get too much. Then I'll have to be in a c-collar for about three months until it wears off. That kind of scares me. Maybe the botox isn't damaging to you because your problems are mainly down lower and the upper is compensatory? I'm just guessing. Thanks for thinking of me and asking. My anesthesiologist moved. I have to get a new one. I won't need one, though, until my lower back goes out again which is hopefully, NEVER! Take Care.

LindaRacine
12-13-2011, 10:12 PM
Thanks for responding. It looks like you have a very nasty spondolisthesis going on there along with that wedged disc. It looks like bone on bone. You are saying it doesn't hurt all that bad? Are you getting surgery? I hope all goes well with you and you can find a way to stop your progression so you aren't in a tremendous amount of pain.

That's a coronal view, so there's no way of seeing a spondylolisthesis.

rohrer01
12-13-2011, 10:27 PM
That's a coronal view, so there's no way of seeing a spondylolisthesis.

My bad. Thanks for the correction. I just saw the vertebra shifted out there. It still looks awefully painful... What would you call it, then?

Also, what is "negative saggital balance"?

Thanks in advance.

LindaRacine
12-13-2011, 10:37 PM
I'd have to see X-rays, but I think it may be a fracture.

Negative sagittal balance is when the person is actually leaning back. Positive sagittal balance is when the person is bent forward (far more common than negative).

jrnyc
12-14-2011, 12:25 AM
hey rohr
i have an HMO as well...they have never rejected the botox claims...it is medical...i found out about botox for
these kinds of problems when a woman at work told me she was getting botox for hip problems....
we were both social workers at public schools in NYC...i imagine she had an HMO as well...

i get the botox in upper spine only...i do not know that my upper curve of 42(last measure almost 2 years ago) is compensatory....
i just know it is there, along with listhesis (in upper spine), hypokyphosis, rotation, DDD, lumbar curve of 61 (last measure almost
2 years ago), spinal stenosis and spinal arthritis...i dont know what it is with the SI joints, but the only lower spine relief i
get is from SI joint injections...epidural injections never relieved the pain, nor did facet block or nerve ablation...
i just got a new full spine X ray 2 weeks ago...i havent looked at it yet...but the pain doc who does SI joint injections
and who is also a surgeon will go over it with me when i see him for shots in January...
it was Lonner who read the X ray 2 years ago, so now i will be dealing with observer subjectivity/bias with other doctors reading
the new X ray...

by now i have been to 5 different pain management docs over the last 8 years or so, and kept 2 of them...
one was anesthesiologist as well, and i don't see him anymore...one is also a surgeon, and he is one of the pain docs i still see...
my HMO never restricted me to one doctor or one surgical opinion...as a matter if fact, they told me there is no such
thing as a "second opinion" anymore in their way of thinking...
once i picked up Medicare, the HMO became secondary...the main difference is that for Medicare i don't need referrals
any more...a benefit to be sure...

i hope you can find a pain doc who uses botox so you can see if it could help you...

jess

rohrer01
12-14-2011, 06:44 AM
My doc looked into my policy and my insurance doesn't pay for it except for migraine treatment after all other methods have been tried and failed. All insurance is not created equally. It sounds like you have a better plan than mine. I don't need referrals IF I stay in-network, and the network is pretty big. But, there are NO scoli docs at all in-network. I think they are actually working on that, as the hospital now advertises they have a "spine clinic". Yeah, right.

The trigger point injections are helping. I was actually weaning off my percocets pretty well and starting to exercise. Now this morning I woke up with this SHARP stabbing pain in the bones of my neck if I try to turn my head at all. I resorted to taking my pain meds and putting my c-collar on, bummer. Maybe it will go away.

I was hoping to be OFF all pain meds by January as I'm probably having surgery then for another problem (female related). I want my tolerance to be down for those drugs, or I'm going to be in big trouble come surgery time! One pain added onto another pain. I hate the cumulative effect it has on the body and mind!

Thanks again for thinking of me. I definitely wish I could try the botox, but at a thousand dollars per injection, I can't afford to pay out of pocket. I'm already paying $830 per month for just the stupid insurance AND they quit paying 100% and added a 10% co-insurance. They did lower the copay BUT they also added a deductible! All of this is AFTER raising our premiums! I think they know I'm gonna need surgery and they are making the whole group suffer. This stuff ain't cheap!

rohrer01
12-14-2011, 06:47 AM
I'd have to see X-rays, but I think it may be a fracture.

Negative sagittal balance is when the person is actually leaning back. Positive sagittal balance is when the person is bent forward (far more common than negative).

That's really strange. Why would I be leaning back? You'd think I would be falling backwards. Maybe my center of balance is different because of the curve? I have only 6* of kyphosis in my T-spine. Maybe that's the reason.

Thanks, Linda.

LindaRacine
12-14-2011, 10:44 AM
You're probably right.

rohrer01
12-14-2011, 07:56 PM
That's really strange. Why would I be leaning back? You'd think I would be falling backwards. Maybe my center of balance is different because of the curve? I have only 6* of kyphosis in my T-spine. Maybe that's the reason.

Thanks, Linda.

And to think that one doctor had the nerve to tell me, at the ripe old age of 16 or 17, that I would be one of those old ladies with a rounded back! NOT something you say to a teenager, for sure. I'm kind of thinking he didn't have a clue as to what he was talking about, since I have the opposite problem, as HE should have known. But, when you go to a free clinic, you see a different doctor every time and they are in training. Maybe he was referring to my rib hump? Still, it was tactless enough that it still offends me to this day. I wish I could remember who it was!

jrnyc
12-14-2011, 08:14 PM
i went to a scoli doctor in NYC, first one i saw before i knew better...
he said i have a "hump back"
i said "could you use a more medical term? my girlfriend can call it a hump back and she doesn't charge me!
it was Dr Sean McCance, by the way...
only good thing he did was order a myleogram for me...

jess

leahdragonfly
12-14-2011, 08:22 PM
Hi rohrer,

I had negative saggital balance pre-op as well. In my case I think it was because i have a very hypokyphotic thorax (like you describe), and because my lumbar area had a loss of lordosis due to arthritis/degenerative changes. I would have been very bent over forward from the lumbar and my head would have been forward from the plumb line. So to compensate, my spine sort of shifted back in the lower thoracic area, which kept my head from tipping forward, but gave me negative saggital imbalance. I believe it is not really of much consequence or progressive.

rohrer01
12-14-2011, 08:28 PM
Yes, they should definitely have to take a class on bedside manners! As if we aren't self-conscious enough. The funny thing is, I wasn't self-conscious until he made that remark. Then I was always looking.

Now that I'm getting older, I can really see my body looking a bit off. One hip sticks out and I look really curvy on that side. The other side I look like a stick, straight up and down. My belly button is off center. I have ribs that stick out in the front on one side. When I look in the mirror at the back I am hollow between my shoulder blades. One blade sticks out because of the rib hump. I've developed a new rib hump where my new curve is. One arm rests on my body when I stand while the other arm dangles inches away from my body. I feel all bad when I point it out to my hubby and he tells me that only "I" can see it, that I'm beautiful to him and he doesn't think I look out of place at all. I love him for it, even if it is a stretch of the truth! I just tell him he needs new glasses and love is blind. We both get a little laugh. LOL

rohrer01
12-14-2011, 08:41 PM
Hi rohrer,

I had negative saggital balance pre-op as well. In my case I think it was because i have a very hypokyphotic thorax (like you describe), and because my lumbar area had a loss of lordosis due to arthritis/degenerative changes. I would have been very bent over forward from the lumbar and my head would have been forward from the plumb line. So to compensate, my spine sort of shifted back in the lower thoracic area, which kept my head from tipping forward, but gave me negative saggital imbalance. I believe it is not really of much consequence or progressive.

Hi, Gayle.
Just wondering who did your surgery? I measured mine using the same vertebrae that the scoli docs used and according to."my" measurements I'm at 47* and 42*. The radiologist measured me at 42* and 37* with progression from the previous film that measured 46* and 38*. Soooo, I tend to think that my measurements are more accurate since smaller numbers do NOT equal progression! Did that make sense?

Anyway, I was wondering because you got such good results. I don't think 5* is even considered scoliosis anymore and that's great! How do you feel? Since you had negative saggital balance, did you feel like you were leaning forward when you first stood up? A friend of mine that had the surgery for a very large curve (they could only correct her to 60*) said she felt really weird and her center of balance was off. That's why I ask. I'm sure you get used to it rather quickly. I've been reading the comments on the other thread about this topic. I'm also surprised that they did your surgery with only a 47* curve. I'm guessing it was mainly to address the other problems, right?

Sorry for my rambling curiosity. It's just that I've been progressing steadily in one curve or the other for the past three years. It's year four since the progression started, so I don't know if they are going to do another x-ray in March or not. I would be curious to see if it is finally stabilizing.

leahdragonfly
12-14-2011, 09:37 PM
Hi, Gayle.
Just wondering who did your surgery? I measured mine using the same vertebrae that the scoli docs used and according to."my" measurements I'm at 47* and 42*. The radiologist measured me at 42* and 37* with progression from the previous film that measured 46* and 38*. Soooo, I tend to think that my measurements are more accurate since smaller numbers do NOT equal progression! Did that make sense?

Anyway, I was wondering because you got such good results. I don't think 5* is even considered scoliosis anymore and that's great! How do you feel? Since you had negative saggital balance, did you feel like you were leaning forward when you first stood up? A friend of mine that had the surgery for a very large curve (they could only correct her to 60*) said she felt really weird and her center of balance was off. That's why I ask. I'm sure you get used to it rather quickly. I've been reading the comments on the other thread about this topic. I'm also surprised that they did your surgery with only a 47* curve. I'm guessing it was mainly to address the other problems, right?

Sorry for my rambling curiosity. It's just that I've been progressing steadily in one curve or the other for the past three years. It's year four since the progression started, so I don't know if they are going to do another x-ray in March or not. I would be curious to see if it is finally stabilizing.

Hi rohrer,

my surgeon is Dr Robert Hart in Portland, OR. I like him very much and he is coauthor of a number of studies with many other of the "big" names seen here. I had surgery for pain caused by severe spinal stenosis, with spondylolisthesis at L4 and L5. I had a previous fusion there that had a pseudoarthrosis at L4-5. My lumbar curve increased from around 30 degrees to 47 degrees in 2 years time, due to instability and degeneration. Dr Hart told me my spine was the most flexible he had ever seen, which allowed for such a great correction. I have joint hypermobility so I don't know if this is why my spine was so flexible(it was also very unstable due to this). So that is why I had surgery for curve that is smaller than some others. The other severe degenerative problems could not be fixed without fusing up to T8 due to the scoliosis.

I had a really hard time adjusting to my new posture after surgery. I felt like I had someone else's back in my back for over 6 months, although I did get used to it gradually. I had an extremely loud and painful pop in my back yesterday that is still being checked out, but other than that, my back has been doing quite well and I am very active with swimming, light weight training and elliptical training.

rohrer01
12-14-2011, 09:46 PM
Now you made me worry for you. Are you going to get an x-ray to make sure one of your rods didn't break? It sounds like you had a LOT of problems with your back at a very young age. I'm sorry to hear that, but glad you are okay now, aside from the pop you felt. I've been told by a physiatrist that I have very floppy joints. My curve, however, is another matter. It is, or was, very stiff. It didn't budge hardly at all for 20 years. I went to a chiropractor for pain and she broke it loose. Now I'm in more pain than before AND my curves are progressing. I guess THAT was a bad choice. The only other problems that I know of in my back are mild DDD in L5/S1 and spina bifida occulta in L5, which is pretty harmless. I have the usual arthritis starting and what not, but nothing outstanding for my age. At least I have that going for me. Thanks for the reply.

green m&m
01-09-2012, 09:48 PM
My bad. Thanks for the correction. I just saw the vertebra shifted out there. It still looks awefully painful... What would you call it, then?

Also, what is "negative saggital balance"?

Thanks in advance.

Itís just combination of some vertebral shifting and mainly some bony erosion and changes due to tumors around my spine. It looks painful, but surprisingly and lucky for me, my pain levels donít match the imaging.

rohrer01
02-08-2012, 10:41 AM
I had some hopefully good news on Monday. I went and had 10 different areas injected for trigger point injections. I feel much better in my upper back muscles today. I reviewed my headache journal with my doc and I had like 23/31 days with headache. He talked about possibly getting botox for my shoulder, neck and head areas to help with the headaches. I see the headache specialist about it tomorrow. If she agrees, then my other doc will work on getting approval with insurance since nothing else is helping with the headaches (I have already failed every medicine that they have tried). I soooo HOPE that I get to try this and will get some RELIEF from the headaches! Wish me success tomorrow at the doctor, PLEASE!

Rohrer01

titaniumed
02-08-2012, 06:34 PM
Rohrer

This is good news.....

The injections must be up pretty high on you since your curve is high thoracic and lower cervical....a rare thing.

Iím sure you will report your success.

Ed

rohrer01
02-08-2012, 07:09 PM
Rohrer

This is good news.....

The injections must be up pretty high on you since your curve is high thoracic and lower cervical....a rare thing.

Iím sure you will report your success.

Ed

Oh, if I can qualify, I will certainly let everyone know how it goes. I can't get them for my spasms like Jess does, but this might help a LOT for my neck and head pain. I have high hopes! Another plus is they go around your face just like they do for the rich and famous that don't like wrinkles, LOL. I don't have wrinkles, yet. But if I can start getting these shots, it just may help me keep my youthful beauty...hee hee (not that I'm beautiful by the way, just saying)...LOL

If this lady tomorrow lets me down I will be SOOO upset! I'll keep you all posted.

Smiley,
Rohrer01

rohrer01
02-09-2012, 05:05 PM
Well, more hoop jumping. I'm disappointed, BUT I was told that a small percentage of people that get botox for headaches actually get a worsening of neck and shoulder pain. That makes me feel better, as I would probably be in that category. I react very strangely to meds... She has me taking 500mg of magnesium now. We'll see what happens with that, as one side effect of magnesium is diarrhea. I certainly hope this doesn't happen!

jrnyc
02-09-2012, 06:24 PM
i'd be really surprised if you do not have a stomach reaction....
what was the reason for you to take magnesium....?

i know there are always people who have a different reaction to meds...
but there is no way to know unless you try...
i know a few people who get botox for headaches and they are helped by the shots...
i hope you will be able to try them....

jess

rohrer01
02-10-2012, 09:44 AM
Supposedly high doses of magnesium are supposed to help with headaches...???

jrnyc
02-10-2012, 09:55 AM
never heard of that....
be careful...i've only heard of it for stomach problems...
(to solve constipation)

rohrer01
02-10-2012, 09:59 AM
They use it for preterm labor. At least in my case they used it along with terbutaline. I know about the uh..hum... "cleansing" effects of it. So we shall see what happens.

rohrer01
02-14-2012, 01:51 PM
I just want to shout it to the world. I woke up with NO PAIN this morning for the first time in I can't even remember!!! I'm not totally pain free as the day wears on, but no narcotics needed at all today so far. I'm SO HAPPY! Mornings are usually my hardest time. I have so much pain during the night and when I wake up, it has just become something that I exptect. So I'm in total bliss about this, even if it doesn't last. (SMILE) I had the best night's sleep last night ever, too. I don't know the reason for this. I recently had trigger point injections and magnesium added to my daily diet of pills and yesterday my PCP doubled my heart medicine. I'm hoping it's the combination of the better diet, more exercise, and the new meds. I'm having some hope for the first time in a LONG time that I can get off of the narcotics and NOT have to live with the pain. If I don't take the pain meds then I have to live with pain. Then I can only tolerate that for so long and end up back on them. I have had periods of relative pain relief and not needed them before. But lately, for the past couple of years, you all have read my struggles. So even ONE DAY is a start and I'm really happy!

Pooka1
02-14-2012, 02:43 PM
Wow that's amazing news! Very happy for you!

rohrer01
02-15-2012, 04:49 PM
Thanks Sharon!
So far so good, today as well! I'm getting quite sore, but I took advantage of yesterday and went sledding with the grandson. We had a blast! Now to figure out the headaches... I'm more optomistic than I have been is such a long time. It's just amazing what one really good day can do for the psyche.

JenniferG
02-15-2012, 05:41 PM
Only just caught up with this thread. That's such great news! Keep us up to date, I do hope this lasts. So nice to hear someone in constant pain, have a win!

rohrer01
02-15-2012, 10:14 PM
Thank you, Jennifer!
I have these episodes off and on since forever. I'm really hoping that this one is finally coming to its end. They usually last anywhere from a week to a couple of months, except for the really bad ones. The last really bad one I had lasted about three or four years, wayyy too long. This one has been a little over two years, so far. But the pain involved seems to be much worse and the DDD and headaches to go along with it makes it harder. I appreciate the encouragement! At least now I feel like I can start addressing one thing at a time. :-)

rohrer01
03-19-2012, 05:03 AM
Well, I fell on Thursday, right in the hospital lobby, too! My grandson accidentally knocked me over trying to see the fish in the fish tank. I got right up and thought I was okay. I am NOT okay. I need to get to the doc ASAP as the pain in my neck and shoulder are so severe that nothing is touching it! I've been awake all night. Thought about ER last night and I've decided to tough it out. I don't know how smart that was, since I'm still up and it's 5am here. It hurts SOOO bad! Whaaaa. :'(

I fall way too much. My balance just isn't as good as it used to be. I can't figure out why that is because as far as my scoliosis is concerned, I "look" balanced. I don't know if it has something to do with the headaches or the headaches are from my scoliosis, who knows? No one can seem to figure me out. All I know is that I need some pain relief. My percocets just aren't cutting the mustard! I'm too young for this!

I hope everyone else rested well.

Rohrer01

Pooka1
03-19-2012, 05:26 AM
Sorry to hear that, Rohrer.

I don't understand why the percosets don't touch it unless it is nerve pain. Does it feel like nerve pain?

Over the counter don't touch my herniated disc pain.

By the way, as I recently learned, headache can be a symptom of a herniated disc. Sometimes there are no other symptoms. Besides the lumbar, the neck is the other place where discs herniate. Maybe you are dealing with that?

I have been awoken in the middle of the night with a strange headache several nights since my injury. That is the disc rupture.

Good luck.

rohrer01
03-19-2012, 12:26 PM
Sorry to hear that, Rohrer.

I don't understand why the percosets don't touch it unless it is nerve pain. Does it feel like nerve pain?

Over the counter don't touch my herniated disc pain.

By the way, as I recently learned, headache can be a symptom of a herniated disc. Sometimes there are no other symptoms. Besides the lumbar, the neck is the other place where discs herniate. Maybe you are dealing with that?

I have been awoken in the middle of the night with a strange headache several nights since my injury. That is the disc rupture.

Good luck.

I think it's been over a year since I've had a cervical MRI. I had a mild bone spur and some slight narrowing at the left nerve root opening at C-4/C-5. So I don't really know if I've had any changes since then.

Yes, I have nerve pain and severe muscle spasms create "nerve like" pain. The muscle spasms were so bad last night that it looked like ribbons under my skin on my upper left trapezius. Percocet quits working when you are on it for a long time like I have been. Your body gets accustomed to it. It will do that with any narcotic. I have an appt today and am going to ask if I can switch to another med to see if it will work better for a time. I also want to ask about toradol. It's an injectable NSAID. I don't know if they can prescribe it or not. I can't take oral NSAIDS anymore because of my stomach. My mindset is if I can get some of the inflamation down by using an NSAID, then I won't need so many narcotics. I can give myself a shot, so that's not a problem. I just don't know if it can be prescribed. I've had it in the past and it didn't help with the pain, but I'm wondering if it isn't because the pain was too far out of control for it to work. I'll let you all know what he says.

Headaches are my life. They are working on a solution for that. I think they should be doing an MRI or CT scan or something before trying all of these meds for my headaches. I've had one MRI of my head for headache, but it was done without contrast and it was like 6 to 8 years ago. My headaches are different and they should be ruling things out, especially since I've developed nodules on my head. I have two of them now, and sometimes they hurt and they are getting bigger. I need to be a LOT more proactive at my appointments!

Thanks for the well wishes, Sharon. I hope I get some relief today, too!

What are they going to do for your ruptured discs? Are they lumbar or cervical or both? I hope you feel better, too!

rohrer01
03-19-2012, 11:18 PM
He gave me two shots of Nubane and something for the nausea. Nubane is "supposed" to be a good pain killer. All it did for me was make me hallucinate and I was still in just as much pain. I'm still in pain, although he urged me to go back on fentanyl. I said not unless this lasts more than a week. Fentanyl is hard for me to go off of.

As far as the injectable NSAID, I thought I would bypass the tummy trouble by going straight to the blood stream. Apparently, all the NSAIDS do their most damage AFTER they get into the blood stream. So that was a no go. I could still get ulcers from them, no matter how I take them.

I just have to make it to tomorrow. Pain, pain go away...do NOT return even for a day...I'll update you all as to how it goes for me tomorrow. At least I know that if it gets to a 9 again, I can use my fentanyl patches, as much as I don't want to do it.

Pooka1
03-20-2012, 05:55 AM
What are they going to do for your ruptured discs? Are they lumbar or cervical or both? I hope you feel better, too!

It is just a lumbar. It is resolving. I diagnosed it myself based on the identicalness to when I did have a diagnosed disc rupture in the early 1990s and the textbook symptoms.

It will take a few weeks to a few months to resolve just like last time

By the way, I found a web site saying disc rupture had a strong genetic component. Amazing. My discs are supposed to be pretty dessicated by now (I'm 52) and still I ruptured one with the associated sciatica.

It's again a sports injury... I was riding my horse when it happened.

loves to skate
03-20-2012, 01:38 PM
Rohrer, I am so sorry for your neck pain. Have you been icing it? Ice helped me last year when I had severe neck pain. Also, my primary care Doc gave me a 10 day prescription of cortisone pills which helped a lot. I was having numbness up the back side of my head along with headaches. It was better than having a shot of cortisone.

Sorry for your pain also Poola. Been there and done that also.

Good luck to both of you in resolving your pain.

Sally

rohrer01
03-20-2012, 08:18 PM
Thank you, Sally.

I have been alternating heat and ice for a couple of days. I had one doc tell me that you ice an injury for the first 48 hours and after that you apply heat. I've been alternating because heat is supposed to help muscle spasm and ice numbs the nerve endings.

Yesterday, I got two shots of Nubane, which did nothing except make me hallucinate. NO pain relief what-so-ever, but you wouldn't know that with how loopy I was. I don't like drugs that affect my brain like that! The doc did the best he could, that's all he had on hand.

Today, I had seven trigger point injections for the horrid muscle spasms. I also put a fentanyl patch on because it takes two days for the trigger points to work. I took a percocet until the fentanyl kicks in (it's rather slow because it's a patch). Don't worry folks, I've been here before and am not going to OD. My doc, yesterday, recommended that I go back on fentanyl for awhile. I told him NO because I'm hoping this will resolve shortly AND I don't want to go through withdrawal again. But a couple of days isn't going to cause me withdrawal. I just can't take the pain anymore! It's been four days of unbearably excruciating pain where I only get a dull in it from meds but no real relief and the lidocaine from today is wearing off.

My neck has never quit hurting, so my doc today ordered a set of cervical x-rays "just in case" it's broken. It's highly unlikely, since I didn't hit my head, but it's better to be safe than sorry. Likely I just flared up Arther(itis) in my C4/C5 area. It sure smarts, though!

Oh, and I've finally been diagnosed with something that can be treated with Botox. I have "muscle dystonia due to upper thoracic scoliosis". They will try injecting the upper trapezius (nothing so far has been able to calm that muscle down at all). I have to wait for this episode to settle down and then give my doc a call. I'm pretty sure that the insurance will pull through since I have a physiatrist (MD in Physical Medicine and Rehabilitation/Neurosciences) and a headache specialist (NP in Neurosciences) both recommending it. :-) I hope it works! If it does, then I won't have to get trigger point injections with the risk that steroids pose.

Jrnyc's experience with her drop in cortisol really scared me. I talked with my doc about her, and he is aware of the risks and is only using half doses of steroid with me because of those risks. He says right now I'm not at risk for that happening. I'll be one happy camper if the botox works. I'll be one step closer to my goal of "drug free". When I say that, I really mean "narcotic free".

Anyway, that's my update. Sorry if some of my stuff is redundant from my last update.

Sharon, I hope you know what you are doing. You might be "textbook" with a ruptured disc, but you must remember that all disc injuries aren't equal. Sometimes the disc itself can protrude (if it's just a bulge) or if it's actually ruptured, the cartilaginous material can sit on the nerve. The only way to make it better in the latter case would be to have that piece excised. It's only about a quarter inch incision where they go in and suck it out. You might consider having it checked out just to be safe.

I wish all of you the best! Sally, I know you're not feeling the greatest, either. I hope your PT is helping!

Rohrer01

rohrer01
03-20-2012, 11:45 PM
Just a short clip that I found suggesting that my cervical dystonia is not that uncommon among people with scoliosis. I think especially my "high and tight" scoliosis is likely to make me more succeptible. At least I'm getting somewhere.

http://www.ncbi.nlm.nih.gov/pubmed/12654970

rohrer01
05-26-2012, 03:20 PM
I'm just updating, for those of you interested. I saw another doctor in Physical Medicine and Rehabilitation the other day. He thinks Botox injections will help with the left shoulder and neck pain as well as reducing my migraines because of the cervical dystonia. I hope it works. I go in next week to get them and will keep updating my progress.

mabeckoff
05-26-2012, 04:05 PM
I'm just updating, for those of you interested. I saw another doctor in Physical Medicine and Rehabilitation the other day. He thinks Botox injections will help with the left shoulder and neck pain as well as reducing my migraines because of the cervical dystonia. I hope it works. I go in next week to get them and will keep updating my progress.

Hope you get some relief soon

rohrer01
05-26-2012, 05:07 PM
Hope you get some relief soon

Thanks, Melissa. I hope you get some relief, too.

JenniferG
05-26-2012, 05:08 PM
Good luck rohrer01. Hope you get the relief you so deserve.

rohrer01
05-26-2012, 05:12 PM
Good luck rohrer01. Hope you get the relief you so deserve.

Thanks, Jennifer. You've always been one to lift my spirits. I'm a little nervous, but we'll see. Jrnyc (Jess) gets botox for her upper back pain. I know they are afraid of progression if they treat the whole upper spine. There's not a whole lot of experience with adult scoliosis at my hospital, yet. It's a great place, but they just don't have anyone who treats adults, only peds. So I feel like I'm an experiment.

loves to skate
05-27-2012, 09:10 PM
Rohrer01,
I hope the Botox works for you. I have a friend who was in a study that was testing Botox on Migraine parients and it helped with her migraines a lot. You will be in my prayers.
Sally

rohrer01
05-27-2012, 09:15 PM
Rohrer01,
I hope the Botox works for you. I have a friend who was in a study that was testing Botox on Migraine parients and it helped with her migraines a lot. You will be in my prayers.
Sally

Thank you, Sally. That gives me some hope. The doc's pretty sure that the occipital injections will help a lot, but if not, then he'll do more around my head and face. I hope the shoulder pain settles down, too. I'm getting a little nervous as the day approaches!

rohrer01
05-30-2012, 08:56 PM
I just wanted to update everyone on how my Botox injections went yesterday. First of all the injections don't hurt. I had a couple done in the paraspinals on both sides of my neck. I don't think he did the occipitals like he had planned on. I didn't feel any injections there anyway. He also did my left upper trapezius in three spots. When he did that my shoulder and head jerked because of the "trigger points" in the muscle. He told me that normal muscle doesn't respond that way when you put a needle into it. Okay....

Afterward I felt fine. On the way home my left shoulder and arm started feeling very weak and weird. It ached and felt numb all the way down to the top of my hand. That went away pretty quickly and by the time I got home (an hour drive) my left shoulder and bicep HURT like I had done a major work-out and wrenched my shoulder in a bad way. That lasted through the day and I had a headache. I also noticed that the muscles that were injected were extremely swollen. When I looked in the mirror, I also noticed that there was a stringy piece of muscle sticking out that stretched from my upper neck to my shoulder.

Today, my shoulder and upper arm still ache a little. That weird muscle strand still sticks out and my neck HURTS. I don't know why it hurts today and not yesterday, but it doesn't feel like bruising. It feels like muscle spasms. So far I still have pain through the neck and shoulder upon standing. I am hoping that the Botox will eliminate this symptom. He said it takes anywhere from two to six weeks to get the full effect of the Botox. So I have a little waiting to do to see if it helps.

My usual pain meds aren't helping, so I reluctantly put on my last fentanyl patch, which isn't helping either. My doc offered to give me a refill of the fentanyl to use when the pain gets out of hand, but I declined. I told him I had one patch left and today I'm using it. I don't like the patch delivery system because it seems that you still need to take pills with it anyway. Although I will say that the oral medication usually works better with a patch. But that's a different topic.

I will keep you all updated as time goes by, since these shots don't work right away. I'm waiting for the initial trauma of the injection to pass. It should take about three days.

Hope you all had a wonderful day!
Rohrer01

Just one last thought. I am getting a massive headache from this neck pain. It's right sided today. This is a symptom that I would have before I got the Botox, so I can't blame it on that. I'm hoping that the Botox will kick in and stop this from happening! I hate headaches! :-(

JenniferG
05-31-2012, 03:58 PM
Sorry you're going through this. I hope you don't have to wait that full length of time for relief.

We're going away for the weekend, back Monday night. Hope to read you're feeling a lot better by then. Good luck!

jrnyc
05-31-2012, 08:06 PM
rohr, i am so sorry you are going thru this...

i usually get the injections in upper left spine, where
my "hump" is...now and then they will inject a little into upper
right spine...
the shots always hurt...seems the tighter my muscles are in
those areas, the more the shots hurt...i have never had a shot
anywhere in my spine or SI joints that didn't hurt, i don't think...
doctor said to try to relax muscles, but i can never seem to do that...

i have never had any reaction of any kind, though...
no swelling, nothing...
the botox relieves my muscle spasms...but it not the same kind of
relief as i was getting with SI joint injections of steroid...

i hope the botox kicks in fast and relieves your spasms...
i know botox can kick in for cosmetic tx in 2 days....
i NEVER heard of a doctor saying it took any longer than 2 weeks for it
to kick in when used therapeutically for muscle pain type stuff

jess...& Sparky

rohrer01
06-01-2012, 12:29 AM
The swelling was gone by the next day. I had the migraine starting before I got the injections, so it could be that it's just running its course. The pain in my neck doesn't feel like bruising, but certainly could be. I've never had a bruise to my paraspinals as far as I know. It's worse in the right side, but that correlates with the headache. He's being ultra conservative with the amount of Botox because he doesn't want my head to droop. So I may not get any benefits this time around. He said that I might notice a difference in two or three days but the full effect may not happen for two to six weeks before it starts to decline. If anyone's going to have a strange reaction to any medicine, it's going to be me! LOL... Not really funny, but so true!

jrnyc
06-01-2012, 12:40 AM
rohr, i bruise from any needle most of the
time, like from blood work....i usually get a little bruise from
any kind of shot in spine...and for me, they hurt...really hurt...
my muscles are probably more tense than i am aware of...
same thing can happen with acupuncure IF the muscles are
tense...or if you move while the acupuncture needle is in...

jess

rohrer01
06-01-2012, 01:03 AM
For some reason, needles don't hurt me. That's okay with me! My muscles were so hard that he teased me and asked if I had a rock implanted under there! When the needle went in, my muscle gave a HARD jerk. He said that was definitely from trigger points within the muscle because normal muscle doesn't do that. It was a weird feeling. It felt like the tics that I get there, though. It was just induced by the needle. I don't know why, but it was a little embarrassing to jerk like that because I was trying to hold very still.

It may take a couple of treatments to get the dose right. I'm going to ask him about the other areas around the spine that are painful. Now that I have the dystonia diagnosis, maybe I can get injections in the other spasmed areas. The fear of the other doctor was that my spine might start collapsing if the paraspinals are weakened. This new doctor may have other opinions, I don't know.

I don't quite understand why they won't let me have another epidural injection, though. They work so well and totally get rid of my lower back pain. I know my DDD is pretty mild and has actually improved. But the pain is still there daily. It's not severe, usually, but it's wearing. I take more pain meds because of it, even though it doesn't seem to help that much. Walking USUALLY makes it feel better. But I have days that walking aggrivates it, so I never know. I'm doing EVERYTHING that they are suggesting I do, so it's not like I'm an uncooperative patient. It's just so hard when you have daily pain. It just wears me down to the point where I feel like I have no energy. If I do have a really good day, then I always have worse pain when the endorphins wear off. I can't be in the gym or vigorously doing stuff all of the time. I've never been a high energy person. My metabolism is just too fast. I go in bursts.

I suppose that's all for now. Oh, I got bit by something on my side while working in my garden the other day. Ugh. Either that or I'm getting Shingles. I haven't looked that closely at it. It definitely hurts and itches and the red is spreading around my side. I certainly hope it's not Shingles!

Have a good night!
Rohrer01

Ugh! I think it is Shingles! I have three bumps there now instead of only one! Argh!!!

loves to skate
06-02-2012, 06:59 PM
Sorry to hear the shots have caused you extra pain and hope the start to work for you soon.

Shingles start out with tingling before you see any sine of blisters or itchy spots.

Take care, Sally

rohrer01
06-09-2012, 12:06 AM
Okay, so here's my update:
It turned out that I did have shingles. The good news is I caught it super early and am on megadoses of the antiviral acyclovir five times a day. I started getting better within two days of taking the meds.

My neck pain is worse than before the Botox, unfortunately. I think the weaker muscless are making the other muscles work harder. My head doesn't droop forward but if I tilt it back it droops backwards fairly easy. Headaches haven't stopped because the occipitals are working overtime, at least that's what I think. I developed pain in my left arm right away. It seemed to subside after about a week. The bad news is that there is an area in my range of motion that is excruciating. I went to the gym and did the side arm lifts. It was absolutely agonizing! If I hold my arm straight to the side and lift it, it starts hurting before I get to shoulder level with it and a little beyond shoulder level. I had to quit that exercise. The funny thing is, if I bend my arm like a chicken wing, I have full range of motion in the shoulder. My neck feels much stiffer than it did before. I feel like the range of motion in my neck has also worsened. I'm saddened by this outcome. I had such high hopes for some relief. I also feel like I'm due for some more trigger point injections, but am not sure if I should get them done. It is really hurting between my shoulder blades again.

This may just be a trial and error process OR Botox may not be the solution for me. I kind of felt like it was my last hope. I'm actually taking MORE pain meds now. =(

jrnyc
06-09-2012, 02:30 AM
i am so sorry that botox has not helped you, and seems
to have made some things worse...
it basically freezes muscles...
i do not know what it did to you, freezing muscles where
the doctor injected...to make the pain get worse...
i have had times the botox helped me a lot and times it
didn't seem to help me as much...
the ONLY time it ever made anything worse for me was when
it was used, without my knowledge, to inappropriately
inject sciatica...THAT made the sciaitca worse...
i was really upset that the pain doc did that without
consulting with me...
but whenever botox has been used appropriately on me,
it has helped...either a little or a lot...

so sorry, rohr, that you are in more pain...

jess...& Sparky

JenniferG
06-09-2012, 02:39 AM
I'm so sorry to hear that very disappointing news.

mabeckoff
06-09-2012, 10:56 AM
I am sorry to hear that you are still having problems

rohrer01
06-10-2012, 12:57 AM
Thanks everyone. I actually noticed today that I DO have trouble lifting my head up if I'm leaning forward. It hurts to do, as the unaffected muscles are strained so hard. But, as long as my body is upright, I have no problems. I definitely do NOT need a larger dose in my neck! I think I will ask him about injecting different muscles next time. My upper trapezius is still as hard as can be. I don't understand this. I got three injections in it! I'm not quite sure what to do next. I'm not even sure I should call the doc about it, as there is nothing he can do at this point. It just has to "wear off".

rohrer01
06-10-2012, 09:14 PM
Well, I'm going to have to break down and call a doc tomorrow. My pain is NOT under control. The Botox hasn't helped the excruciating pain that I get sometimes when I stand. It's in the left scalene (sp?). The docs are all afraid to do anything about it because it's so close to my lung. I'm miserable most of the time and the pain meds are starting to not work. I know it's not an addiction factor because I had a day (woo hoo) the other day where I only required two percocets and had NO withdrawal effects what-so-ever. So I know for a fact that it's pain driven. Argh!

At least the exercising is going well! I am energized by it, but if I dare lay down I'm done for the day. I credit pain for this fatigue. I try to get all my stuff done when I get home from my workouts. It's working pretty well. I am getting a lot stronger, too. It's amazing what three times a week does for a person. I'm only supposed to be there for an hour, but I'm usually closer to actual hour and a half workouts. I do cardio and then lift weights. It feels really good. =)

mabeckoff
06-10-2012, 11:26 PM
Hope you get some relief

jrnyc
06-11-2012, 03:52 AM
rohr, how are you able to do such long work outs
when you have such pain....??

jess

rohrer01
06-11-2012, 12:44 PM
Jess,
I take my painkillers before I go. I had to take two this morning. Once I'm going, the endorphins kick in. When I get back I have extra energy for about a couple of hours then I'm DONE. I've been having that aweful shoulder pain again. The walking on the treadmill actually kicked up my sciatica, but it wasn't intolerable. It quit when I quit walking. I've had to quit one exercise all together because it's so painful. It's the side arm lift. For some reason, that's the only one that really bothers me. I'm really not doing heavy workouts, as far as the average person would think. I walk the treadmill at increasing speeds for up to a half hour. I ride the bike for ten minutes. I do the arm bike for five minutes. I warm up with either the sitting stair machine or the treadmill and cool down with the sitting stair machine. Then I go over and do leg presses, chest presses, rows, a machine for the back (don't remember), and then standing crunches. That's it.

Some days are better than others and I can work harder. But none of those exercises really affect the neck or upper back in a way that causes me pain. The side arm lifts are just excruciating and, like I said, I quit doing them. I think when the endorphins wear off, that's when I start to feel it. It doesn't seem like muscular pain from a hard workout, so in that sense I can say that it is pain free. It's all the stuff that normally hurts in the upper back, neck, shoulder and arm, all the symptoms of a heart attack, right? How would I ever know? I'm actually surprised that the chest press and rows don't hurt. But, hey, I'm not going to complain. I'll try to gain as much muscle mass as I can and hopefully this pain will eventually subside.

Thank you, too, Melissa. I didn't get up the nerve to call the doctor today. I keep hoping I won't have to. I'm afraid that I'll take too much medicine and run out, though. I did a pill count and I'm actually doing fine. But if I keep having bad days where I need more, my little cushion will be gone. I only get so many per month and I have to make them last.

loves to skate
06-12-2012, 08:33 AM
Hi Rohrer,

I have been away to my grandson's HS graduation, so have missed a lot on the forum. I am so sorry you are having so much pain and that the botox has caused you even more pain. I hope that the exercising will eventually help you.

I'm glad for you that you caught the shingles so early like I did. Had you ever had the shingles vaccine? My Doctor said that having the shingles is as good as having the vaccine, like a booster shot.

Take care, Sally

rohrer01
06-12-2012, 11:03 AM
Hi Rohrer,

I have been away to my grandson's HS graduation, so have missed a lot on the forum. I am so sorry you are having so much pain and that the botox has caused you even more pain. I hope that the exercising will eventually help you.

I'm glad for you that you caught the shingles so early like I did. Had you ever had the shingles vaccine? My Doctor said that having the shingles is as good as having the vaccine, like a booster shot.

Take care, Sally

Thanks, Sally. I'm actually hoping the exercise helps, too. In the past, when I've done exercise it took awhile to build the muscle mass where I needed it. But it eventually helped and I was able to get off ALL meds. I have the same high hopes this time. But even if it doesn't help to that degree, it's good for me. Laying around all day does NOTHING for making pain go away and only weakens me which makes pain worse. I'd rather take more meds now, in hopes of feeling better through exercise, than lay around, which is pretty much all I've been able to do. I didn't even have the energy, and it hurt to do all that stooping and bending, to properly tend my garden this year. =(

As far as Shingles is concerned, it's pretty much my understanding that once infected with Herpes Zoster (Chicken Pox / Shingles virus) you are always infected (most, if not all, Herpes infections work that way). I have worked with people in health care that have chronic bouts of Shingles. I think it's a wives tale that once you get it you can't ever get it again. I'm wondering if the Shingles vaccine isn't the same as the Chicken Pox vaccine for adults that have never had Chicken Pox...??? Hmmmm... I had a very bad case of Chicken Pox as a young child. I still remember how awful it was! It just so happens that my Shingles outbreak started around a very bad Chicken Pox scar on my side that I never knew I had until I saw the Shingles there. The scar remained white and the redness spread around it. Weird.

Take care and I hope you can keep your sciatica under control.

jrnyc
06-12-2012, 12:31 PM
hey rohr
i never had chicken pox...or measles, only mumps...
since i worked in schools, and the kids kept popping
up with chicken pox every year, my GP insisted i get
the chicken pox vaccine...
i do not think i can get chicken pox or shingles, since
chicken pox was never in my body...but i haven't checked
it with a doctor...

jess...& Sparky

rohrer01
06-12-2012, 05:18 PM
I've known people who's kids came down with Chicken Pox after getting the vaccine. The doctors argue that the cases are much less severe than had they not had the vaccine. I've also done research on the Chicken Pox vaccine actually CAUSING Shingles later in life. There's no good medical answer for some things. I hope you NEVER get either.

loves to skate
06-13-2012, 07:26 PM
Thanks Rohrer. I am going to try a nerve ablation as soon as I hear from the hospital for an appointment. I think my overall pain level might be just a little better this year than last year but it is very subjective.
Sally

leahdragonfly
06-13-2012, 10:36 PM
RE: Shingles after getting the Chicken Pox vaccine...I had never thought about this, so I checked it out a little after reading your thread rohrer. I never had chicken pox as a child, and I work in the hospital so I was vaccinated as an adult.

Here is what the Vaccine Action Coalition says:


Can the vaccine cause herpes zoster (shingles)?
Yes, this is possible. The risk of zoster following vaccination appears to be less than that following infection with the varicella virus. The majority of cases of shingles following vaccine have been mild and have not been associated with serious complications.


Rohrer, I am really sorry to hear of your increased pain after the botox, and I hope you will call your doctor if needed. This must be so frustrating for you, I know you were so hoping for pain relief not worsening.

Curious, what is a seated stair-climber? I go to a gym, but I'm not sure I've ever noticed or seen one of these. Sounds interesting.

Take care,

rohrer01
06-14-2012, 04:09 PM
As far as Shingles from the vaccine goes, I know a guy that worked for the CDC when they were developing that particular vaccine. He was a statistician and the CDC wanted him to not report or alter the negative findings. That's my understanding of it, anyway. I think that's why he quit working for them. I'm not saying that I wouldn't get vaccines or vaccines for my kids, but it's kind of scary to think that the CDC would want to cover up the actual results. I say, tell it like it is and let the public decide. I had my daughter get the series of vaccinations for HPV and I thought the second shot was going to kill her. Since my kids were older, we went out of town (about three hours away) for the night after she got the vaccine thinking nothing of it. I got a frantic call from my oldest son who thought she was dying. Of course I told him to call 911, but she resisted. We immediately came home in record time. She had high fever, neck pain and light sensitivity. I was afraid it was meningitis, but her symptoms improved during the night. By morning she was okay. But it was from the vaccine. I chose NOT to get her the third shot in the series being fearful of a worse reaction. She took herself in to get it later and wasn't affected by it. There certainly are real risks with vaccines, but there are risks without them, too!

As far as the question about the seated stair climber; it's just something you sit in, like a recumbant bike, but instead of the pedals rotating, there are foot platforms like on a regular stair climber. There are also arm handles that you hang onto that move back and forth with each step. It's really quite a simple comtraption designed for people that can't handle a harder workout, or have really bad backs, or hearts.

I did break down and call my doctor again today about the increased pain. I have an appt next week. I'm so disappointed. =( I was hoping to get OFF all of this garbage medicine.

mariaf
06-15-2012, 10:42 PM
There certainly are real risks with vaccines, but there are risks without them, too!

I agree with this and have often been torn about getting my kids (and myself) certain vaccines. It's really a crapshoot. And very scary about the CDC although I totally believe it, which makes it more of a confusing issue when you don't know what is true and what isn't.

susancook
07-01-2012, 04:55 PM
Well, I'm going to have to break down and call a doc tomorrow. My pain is NOT under control. The Botox hasn't helped the excruciating pain that I get sometimes when I stand. It's in the left scalene (sp?). The docs are all afraid to do anything about it because it's so close to my lung. I'm miserable most of the time and the pain meds are starting to not work. I know it's not an addiction factor because I had a day (woo hoo) the other day where I only required two percocets and had NO withdrawal effects what-so-ever. So I know for a fact that it's pain driven. Argh!

At least the exercising is going well! I am energized by it, but if I dare lay down I'm done for the day. I credit pain for this fatigue. I try to get all my stuff done when I get home from my workouts. It's working pretty well. I am getting a lot stronger, too. It's amazing what three times a week does for a person. I'm only supposed to be there for an hour, but I'm usually closer to actual hour and a half workouts. I do cardio and then lift weights. It feels really good. =)

Congratulations on the excercise! That helps physically and mentally.
Susan

susancook
07-01-2012, 05:10 PM
Thanks, Sally. I'm actually hoping the exercise helps, too. In the past, when I've done exercise it took awhile to build the muscle mass where I needed it. But it eventually helped and I was able to get off ALL meds. I have the same high hopes this time. But even if it doesn't help to that degree, it's good for me. Laying around all day does NOTHING for making pain go away and only weakens me which makes pain worse. I'd rather take more meds now, in hopes of feeling better through exercise, than lay around, which is pretty much all I've been able to do. I didn't even have the energy, and it hurt to do all that stooping and bending, to properly tend my garden this year. =(

As far as Shingles is concerned, it's pretty much my understanding that once infected with Herpes Zoster (Chicken Pox / Shingles virus) you are always infected (most, if not all, Herpes infections work that way). I have worked with people in health care that have chronic bouts of Shingles. I think it's a wives tale that once you get it you can't ever get it again. I'm wondering if the Shingles vaccine isn't the same as the Chicken Pox vaccine for adults that have never had Chicken Pox...??? Hmmmm... I had a very bad case of Chicken Pox as a young child. I still remember how awful it was! It just so happens that my Shingles outbreak started around a very bad Chicken Pox scar on my side that I never knew I had until I saw the Shingles there. The scar remained white and the redness spread around it. Weird.

Take care and I hope you can keep your sciatica under control.

You can get shingles many times as you mentioned. It reappaers when you are stressed, immunocompromized, phyically ill with something else....or just randomly. I had chicken pox as a kid and shingles as an adult. I started the zovarax within an hour of the first tingling of trigeminal pain...probably the world's earliest treatment. I was at work in the clinic and the side of my face started to hurt slightly and then tingle, and I realized that it was on the distribution of the trigeminal nerve. I went to the Pharmacy STAT and started zovarax within the hour and made an appointment with the ophthalmologist immediatlely. She said that I had the very beginnings of herpes viral damage on my eye, but that I caught it early.

I looked at the CDC recommendations, and then got the Shingles vaccine when I turned 60, even with the shingles outbreak in my history. It is contraversial whether people with shingles should get the vaccine, but I'm all for preventing blindness from shingles.

Best of luck! Shingles is not for the weak!
Susan

susancook
07-01-2012, 05:17 PM
I did break down and call my doctor again today about the increased pain. I have an appt next week. I'm so disappointed. =( I was hoping to get OFF all of this garbage medicine.[/QUOTE]

Give yourself credit, you're working on it! You may never totally get off ALL medicines, the amounts and names of the drugs will cahnge as your needs change. Great that you called, maybe your doctor will have some new ideas short of more medicine. Good luck! This has been such a journey for you and I think that you are pretty amazing with all that you do to be proactive and take care of yourself.
Susan

rohrer01
07-25-2012, 02:43 PM
For those of you who are following this thread.

My Dr.'s appointment last month was a waste of time. I declined Fentanyl and was offered Lyrica. So I didn't do either. I don't really know what I expected. My expectations were too high. So I'm working on mentally lowering my expectations since I'm going to have to live this way for the rest of my life.

I had an appointment today with my new physical medicine doc. He's quite brilliant, actually. He's an M.D., Ph.D. in his field. Today was the follow-up for the Botox. He's going to lower the dose of Botox since I had quite the pain episode when the drug peaked out. My shoulder and arm pain is from the release of the upper trapezius. When it relaxed some, my shoulder lowered which put stress on the muscles in my neck and arm, thus the left arm pain. My PCP wasn't able to make the connection and thought I had common bursitis in my shoulder. This new doc is brilliant! I know I said that already. =) He gave me occipital nerve blocks today to help with the headaches. I don't know if it will work because the injections caused more pain and it contained two anesthetics. It's the steroid in it that's supposed to reduce the inflammation from around the occipital nerves. We shall see. I go back on Tuesday for some trigger point injections around the scapulae. These won't contain steroid, which I'm fine with. He's worried about too much steroid dropping my cortisol. He seems to remember everything. I'm very sad to see my old physical medicine doc move away. He was very good, too. But the new one is trained in doing the more dangerous procedures, and does a lot of them. I'll need some work on my left scalene which is attached to the first rib and VERY close to the lung. I'm not quite sure what the plan is there. I'll find out on Tuesday. He seemed a little disturbed by how out of whack my neck and upper back are. I have a bony prominence at the base of my neck, which is either part of T1 or part of the first rib which is very displaced.

The pain I experienced from the Botox releasing the few muscles treated is just a drop in the bucket to what would happen with a fusion that straightened that area. I concluded that to him out loud and he told me that would be putting it mildly! The possibility of having fusion really scares me now that my muscles have developed and been so short in places for so long. I don't know how you all survive. My whole arm went numb after the Botox! I still can't bring it straight up and out to the side without a fair amount of pain. I'm trying to get my mind around how this surgery could make anyone feel better when they have it done in middle age or later. Maybe it's just because of where my particular curve is and more muscles are involved. Dr. Tribus did tell me that I wouldn't be able to raise my arms after surgery. Now I know why he said that.

All in all the appointment went very well. I'm actually feeling better these last couple of weeks and have begun the weaning process once again. It would be nice not to be on this rollercoaster, but that's life. I hope everyone is having a great day! =)

I'm thinking of JennaKB especially today. She's having her long-awaited surgery tomorrow. I hope all goes well with her!

Take Care!

mabeckoff
07-25-2012, 05:45 PM
Thanks for keeping us informed

JenniferG
07-25-2012, 09:24 PM
Rohrer, after reading that, I just want to reach for that magic wand. You wonder how others get by, and I wonder how you get by.

I'm glad you've found such an excellent doctor,. The pieces do seem to be falling into place to form a proper picture of your back and knowledge is power, they say. Hope the new injections quickly do their work and you get some relief.

rohrer01
07-26-2012, 12:53 AM
Thank you, Melissa, for taking the time to read this. I'm now wondering if some of your pain is caused by your new anatomy as well. Really, when you think of it, our muscles grow to accomodate our spines. When that gets changed, especially around the neck area, it really makes the neck and shoulders hurt! It can also make your arms go numb. Mine was much more minimal than yours. I asked if I should try to stretch it every day and he said, "Yes." I know your case is much more complicated than mine, but it's something to think about. It takes time to reconfigure those muscles.

Jennifer,
Thank you for those kind words. It is encouraging. Really, though, when I think about it, I'm not as limited as I could be. I can do most anything that anyone else can do. I just avoid the stuff that hurts me. Otherwise, I'm able to be active and don't walk with a limp (unless my lower back is really hurting). I avoid running, but have to at times when my grandson darts away from me. It hasn't hurt me, yet. So I'm one of the more fortunate ones when I look at life in those terms. I see elderly people just struggling to get around the store. I can see the pain on their faces as I walk effortlessly by. I'm not saying I don't hurt. But it's better controlled than many people's pain.

I was saddened a couple of days ago to have to take a pain pill to get rid of withdrawal symptoms and not for pain. This tells me it's time to cut back. Although today was kind of rough (well it's yesterday now) and I had to take four pills. I really want off of this stuff if for no other reason than to give my body a chance to readjust and desensitize. That way when the pain gets really bad, then the pills will work ten times better! I'm hurting tonight, though. It's a bummer not to be able to sleep. The "cure" keeps me awake. That's my response to narcotics! I can't believe that junkies actually like taking the stuff. They know that they'll feel like garbage if they get addicted and can't get any more. Why would anyone want to willingly put themselves through that if they didn't have to? It's just inconceivable to me. I'm rambling.

Good night all!

titaniumed
07-26-2012, 02:09 AM
Rohrer, after reading that, I just want to reach for that magic wand. You wonder how others get by, and I wonder how you get by.

I'm glad you've found such an excellent doctor,. The pieces do seem to be falling into place to form a proper picture of your back and knowledge is power, they say. Hope the new injections quickly do their work and you get some relief.

I also agree.....yours is a special case.

Iím thinking of Jenna also. They have probably started on her as I type this. She will have a long complex surgery......Deep breaths.

Ed

jrnyc
07-26-2012, 10:47 AM
i am glad to know there is at least one doctor who KNOWS about steroids dropping cortisol
levels when too much steroid is given....a rare doctor, sorry to say....

hope you feel better, rohr...

jess...& Sparky

rohrer01
07-30-2012, 03:56 PM
Ed, I guess that means I'm "special". LOL

Jess, I told him about your case and he just cringed! Yes, I'm glad he's aware of that as well. When I asked my PCP about it and requested a blood test, he refused. He said that wasn't something they were worried about. I just thought to myself, okay. I even told him about you and he didn't seem to be concerned about it at all. At least the new doc is aware of it. He even said something about being concerned about my lifetime intake of steroids. So I'm wondering if it could be cumulative over time as well. There's so much to know and so much we don't know! I hope you are feeling better, too. =)

rohrer01
11-21-2012, 11:58 AM
Okay, it's been awhile since I've updated anyone as to what is going on. So here it goes. I had another L5/S1 injection a couple of months ago. It didn't work AT ALL. So, the doc wanted me to try chiropractic...again. Sigh...I know all the negative stuff I've said about chiros. Well, it turned out to be the same negative experience. My pain has increased in the lower L spine/sacrum as well as my right shoulder (will explain more). The only thing that feels a little better is my neck. My range of motion in my neck seems a little better after chiro. So not completely ALL bad, but the doc told me never to go back. That, after telling me to go. ha.

Meanwhile, my right shoulder has started hurting as well. I "think" that started around the time of the second Botox, which by the way did relieve much of the pain around my left clavicle/shoulder. So both shoulders were hurting and it gradually got worse on the right. I played tennis, which probably wasn't a good idea. But my shoulder didn't hurt bad enough to prevent me and there was no sudden pain. After that, though it got worse and worse. Not sure if it was tennis related or not because I was able to play again at a later time. Now there is NO WAY that I could play tennis. My doc said it looks like a rotator cuff injury.

So now for the treatment for both:
I'm being sent to PT for both problems. I hate the questioning session that goes on for an hour. I don't know if I'm even consistent with my answers because it depends on how I'm feeling at the time. My lower back was feeling pretty good yesterday, when I went. So I didn't have any significant limitations that particular day. However, my doctor wanted the PT to give me an SI belt to try for the lower pain. So I wore it all day, wasn't sure if it was helping or not, since I was having a "good" day in that regard. I also slept with it on at night. I had a decent nights sleep and the pain didn't wake me up too frequently. Yes, I awake with pain a LOT. I got up to use the restroom and when I took the belt off to do so, OUCH! The pain set in. So, maybe this belt will help after all. I have yet to go to the gym to see how I do there. Since it's only day 1 I can't really give a good evaluation of whether this was coincidence or not. My only fear is that it will weaken some muscles that normally stabilize these joints. So any input on this would be appreciated. The PT guy told me to wear it in any situation when I have pain. He said that when I'm laying down or sitting watching TV or what-not that I didn't need it. I told him that it hurts worse when I sit and lay. So he thought that maybe the belt woudn't work for me. I'm just going to try wearing it all of the time for a little while, then compare it by taking it off for a couple of days.

As for the shoulder, the muscles are very tender around it. I'm hoping that it's just muscular. When the doc examined me, he said that the scapula wasn't moving freely and was kind of stuck down because of my altered anatomy. The docs goal was to free the scapula. The PT is leaning toward massage around the deltoid muscle. At least that's the impression I got. I know that there is a little muscle under that shoulder that is extremely sore. My range of motion when twisting or trying to reach up and behind or down and behind is very limited and hurts a lot. So I'll have to see where that goes. The doc suggested a cortisone shot into the shoulder if PT doesn't work. I'm hoping PT will work because I'm getting enough shots, although the trigger point shots are without steroid now, at my request.

It's hard to decrease pain meds when these "new" things keep cropping up. I can feel my body rotating and my left hip is starting to shift forward. So, I just might have to admit that I'll be on pain meds for the long haul. I'm adding some NSAIDS to try and stave off my narcotic use. All it's doing is helping me keep the dosing steady, as my pain is increasing in some areas as it decreases in others. So I feel a little like I'm at an impasse. At least the headaches are less frequent. I had a pretty significant vitamin D deficiency. That can cause neurological deficits including migraine, a fact that I was not aware of. I still get them and have one today. But they're not every day and not as severe.

So that's the latest. I'll try to update more frequently, as it helps me keep track of how I'm feeling and I hope helps some of you who are in similar straights. I hope you all are having a nice day!

rohrer01
02-14-2013, 12:35 AM
Hello,
For those of you who are following my thread, I'm giving another update. I'm being sent to the surgeon again for a consult. PT didn't help the shoulder at all. The pain is aweful and runs down my arm. Sometimes it's so excruciating that I just can't stand it. I have lost nearly all the strength in my arm for certain movements. My neck pain is ridiculous as is my upper back pain and my low back pain. I'm whining, I know, but my quality of life is horrible. It especially upsets me that I dread playing with my grandson because the pain is so bad that it just sucks the joy right out of it. I'm sad about the whole thing.

I'm in a lose lose situation. IF the spine surgeon agrees to do surgery, that will be just aweful because I'm scared of that surgery. My guess is that I have torn something loose in my shoulder. So I will need surgery for that as well. I think I can pinpoint when my shoulder got REALLY bad. It was when I went to the chiro. She grabbed my arm and yanked it HARD in a full range of motion circular rotation. I thought I was going to pass out from the pain of that. It literally caused tears to stream down my face. So I'm pretty sure that if something got torn, it was at that moment. So the point of that is, it would mean two surgeries if my shoulder is torn. I have a friend who is a PT and she said she's almost positive something is torn because of my symptoms.

The other bad news for me is if the surgeon doesn't want to do surgery on my back. I'm in so much pain all of the time that my quality of life really stinks. Also, because my shoulder originally started bothering me due to impingement syndrome (scapula can't move freely), there would be no point in trying to fix the shoulder as my doctor thinks it would just tear loose again because of my scoliosis. So I'll have to live this way. I can't express how sad and frightened I feel about either option.

So I had x-rays done yesterday. It looks like the scoli has progressed on both curves. It also appeares to me that there is a lateral listhesis forming at the apex of the upper curve next to the left clavicle. I will repost the x-rays so you can give me your opinions on progression. When I measured the new x-ray, I got around 50* upper and 40* lower. I'll be curious to see how the doctor measures it on Monday the 18th. I'll let you all know. So here are my films, again:

2005 1453
2010 1454
2013 below: I've never had so much trouble uploading pictures! It seemed I had it right and it linked the one I edited in its unedited version. Now it's linked my 2013 in a weird way. I've done the same procedure for uploading each item. There must be a glitch in the system.

Pooka1
02-14-2013, 05:41 AM
Rorher, very sorry to hear about this.

I agree the chiro may have torn something. That sounds reminiscent of my husband who tore his rotator cuff. Very painful and no sign of abating until he had surgery (his first ever). That ROM for people without scoliosis might be dangerous on someone with a high curve like you have. A chiro can't know that.

So you have a double thoracic curve, yes? Also, without measuring, there doesn't seem to be a lot of progression in the last three years, no?

Hang in there and don't give up. Solve the problem.

Sharon

leahdragonfly
02-14-2013, 08:31 AM
Hi rohrer,

I notice your pelvis is not straight forward on the new x-ray. It appears that you are turned to one side, not standing completely square to the x-ray plate. The rad tech should have probably repeated the film and ensured you were standing with your pelvis square to the plate. It is sometimes hard to make accurate comparisons on x-rays when you are standing incorrectly. My kids have both had repeats of similar x-rays due to their positioning. I would definitely ask about that when you see the surgeon.

Sorry to hear how much pain you are in. Please do not give up, and let us know how things go next week with the surgeon.

rohrer01
02-14-2013, 03:48 PM
Rorher, very sorry to hear about this.

I agree the chiro may have torn something. That sounds reminiscent of my husband who tore his rotator cuff. Very painful and no sign of abating until he had surgery (his first ever). That ROM for people without scoliosis might be dangerous on someone with a high curve like you have. A chiro can't know that.

So you have a double thoracic curve, yes? Also, without measuring, there doesn't seem to be a lot of progression in the last three years, no?

Hang in there and don't give up. Solve the problem.

Sharon

Well, I actually got my x-ray report in the mail today. The hospital where I had the films done says my lower curve improved from 37* three years ago to 33* this year. Maybe the exercise at the gym is really doing something. However, it isn't helping with the pain. Not sure what the solution for my problem is. They measured the top curve at 42* from two years ago (not posted) and 42* this year. However, two surgeons, Dr. Tribus and Dr. Hey both measured my curve at or within a half of a degree of 46* three years ago. Not sure how it will be measured. Just noticed that I need to edit my 2010 film. (embarrassed)...

The thing is, I don't know what to do to solve the problem. Back pain is a bear. The shoulder hurts constantly and if it's impingement syndrome, can't be fixed without fixing the spine, which I don't think will happen. I'm stuck with no obvious solution. As far as giving up; there's no way to give up unless I die. I'm stuck not giving up. My insurance carrier is hard to work with since they are an HMO. UGH!

rohrer01
02-14-2013, 04:04 PM
Hi rohrer,

I notice your pelvis is not straight forward on the new x-ray. It appears that you are turned to one side, not standing completely square to the x-ray plate. The rad tech should have probably repeated the film and ensured you were standing with your pelvis square to the plate. It is sometimes hard to make accurate comparisons on x-rays when you are standing incorrectly. My kids have both had repeats of similar x-rays due to their positioning. I would definitely ask about that when you see the surgeon.

Sorry to hear how much pain you are in. Please do not give up, and let us know how things go next week with the surgeon.

That is very observant of you. Yes, my left hip was up against the machine because I'm twisting. That's the way I stand. However, she was trying to move me around in the films and trying to position me rather than just letting me stand how I normally stand. The saggittal view came out horrible. You can't see anything except a few vertebrae through my lower thoracic area and my neck. Everything else is totally whited out. She kept telling me to lean forward in those ones. It was a very frustrating session. She had me facing the film instead of standing in front of it. I have NEVER had an x-ray done that way before.

As Sharon mentioned, it doesn't look like a whole lot of progression in three years. However, if you look at where my right clavicle is, you can see that it is much farther away from my spine in the recent film. I don't know whether this is due to progression or rotation. I'm going to guess that there is rotation. When I zoomed in at that level on my computer, it looked like the vertebra at that level was starting to slightly shift to the left. I hope this is NOT happening and I'm imagining it.

My guess is that my trip to the surgeon on Monday is going to be a wasted trip. I'll be left hanging on what to do about my shoulder. It's a very frustrating situation because there's no good solution.

Thanks for looking at my films. I noticed that one was kind of indecent, so I cropped it off. =/

rohrer01
02-18-2013, 06:49 PM
Okay, here's the scoop. I went to see the surgeon today. He measured my x-rays from 2005, 2010, and 2013 side by side. He used all the same end points and got right around 42* for the upper curve on all of them. We didn't discuss the lower curve. It was decided that the scoliosis is indeed causing the pain I'm having in my upper left back. However, since there is no progression, the shoulder injury has to be unrelated. This is GOOD NEWS. That means that if the rotator cuff is torn, I can get it fixed without worrying about it tearing loose because of the scoli. He said my shoulder blade moved like it should when he had me put my hand behind my head.

So based on the fact that much of my pain is muscular (or of unknown origin), the shoulder is a separate problem and he is unsure what the outcome of surgery would be painwise for my upper back (it could make my neck hurt worse), that means NO SURGERY on my spine. I had mixed feelings for a little bit because I have always thought that getting the surgery done might help my pain. Then this overwhelming sense of thinking that this surgery may never be in my future came over me. It's a nice feeling. I've been told since I was a teen that I definitely would need this surgery some day. It's like a release of a dread that's been hanging over my head.

I know Dr. Hey and Dr. Tribus both said I had progressed in 2010 and both measured it at 46*, which scared the life out of me. But there they were, all measuring around 42 degrees! That means I have a really stable curve since I was diagnosed at 16 years old with a 39* curve. He apologized for giving me a scare. He also commented on me being thin and muscular and that being athletic was good. That made me feel good for all the hard work that I've been doing trying to build up my back and core muscles.

I know I will have to combat this horrible pain for the rest of my life. But at least the scoliosis is only part of the monster and not the whole monster. Whatever is wrong with my muscles (dystonia) and whatever ails me from natural aging (DDD and arthritis) are the things that I CAN manage. The scoli pain will always be there, but this somehow takes the scary out of this monster. I'll just deal with it and not worry so much about progression anymore. =)

I guess it's time to change my signature, too!

Take care all.

Pooka1
02-18-2013, 07:59 PM
Well that's pretty good news that your curve reached what it did as a teenager and just hung there for decades. Maybe that means it will never progress any further. Let's hope so.

I'm happy for you! :-)

These testimonials are so valuable.

rohrer01
02-19-2013, 11:54 PM
Thanks, Sharon, for your reply.

I'm happy and relieved that I don't have to worry about having the "big surgery". However, I'm a bit perplexed as to how two very good doctors, both Hey and Tribus, saw at the same time that I had definitely progressed when comparing the same x-rays AND they both measured the curve at the same magnitude. Were they both wrong?

Whatever the case, I am still left with debilitating pain in the scoliotic area. So now I have to figure out how to deal with it and figure out why it's getting worse. I'm tired of popping pills. I'm going to ask again about the intrathecal pump that the one anesthesiologist recommended a few years back. If my spine is stable, that may be an option. I don't know. I was reminded today about just how limited I am from the scoliotic area while I tried to practice the piano. It became so painful I had to stop. Is it just age or something else? Sorry about my musings. I've been in pain for so long that I don't remember what it's like not to hurt. I don't want to subject myself to a surgery just to find out I'm worse off. So it's not that I'm thinking along those lines. I just don't know where to go from here.

I wish there were someone else on here like me. I asked my doctor how many curves like mine he sees. He said that he sees a very high thoracic curve, including both convex right and left, about once every year or two. Left curves are far more rare. So if he's been in practice for say 20 years (I'm guessing), he's seen probably less than 10 people like me. That's not very much experience if you look at it that way. I would like to know how many high convex left patients are in pain and what do they do about it. I'm groping for ideas on how to treat this. Even my other docs are at a loss, really. Right now I'm going to focus on getting my shoulder better. It seems the thing to do for the time being.

I'm glad I'm stable, but SO TIRED of hurting.

Just venting. I've had a rough last three years and am having another rough night.

Thanks for listening.

JenniferG
02-20-2013, 03:26 AM
This is the place to vent, even if people are at a loss as to how to help or what advice to offer. Being in pain so long surely earns you the right. Wish I could offer some practical advice.

PS I'm a leftie, too.

rohrer01
02-20-2013, 11:52 AM
Thanks, Jennifer.
We should start a thread for "lefties". I'd really be curious to see if there really is any significant difference.

JenniferG
02-20-2013, 03:06 PM
It'd be good to know why a few are lefties when most are righties. I may have mentioned before, I won the genetic defect lottery in our family, being the only one of my generation to get Scoliosis and having recently been diagnosed with another genetic condition, hypertrophic cardiomyopathy, but not just HC, but a very rare form called Apical HC. Found virtually nowhere in the world except, and only rarely, in Japan. Now, we've done our family tree going back centuries and there's just about every nationality in our tree except Japanese!

One wonders...

rohrer01
02-20-2013, 09:28 PM
I also have a heart defect in the class of ventricular arrhythmias, called inappropriate sinus tachycardia. It's an electrical problem. I have a half-sister with atrial fibrillation, also an electrical problem. But I am the only one in my generation to have scoliosis, also. I have two children who have/had scoli, but not lefties. I don't know about the others in my family, but I'm pretty sure my niece has a right handed curve. HOWEVER, her curve is similar in size to mine or less and is also painful. Hers is a mid-thoracic curve. I wonder if the pain component is hereditary. Both my son (resolved JIS) and daughter (mild AIS) complain of back pain. My eldest son is unaffected.

I've also thought I drew the short stick in my parent's gene pool as well. In addition to the above, I'm the only one of my siblings with asthma and muscle dystonia.

I looked up left convex scoliosis on some other website and found that 40% of us also have a Chiari 1 malformation. I started a thread on it awhile back. It doesn't look like I have that problem, but my brain appears to be low lying on my MRI. It just seems that there are so many differences in us lefties. I'm wondering, too, in particular about high and tight lefties. I think that this is even more rare. I really would like to speak to a doctor that has more knowledge about this specific type of scoliosis. I'm just not quite sure how to go about it.

JenniferG
02-21-2013, 12:24 AM
I also have a heart defect in the class of ventricular arrhythmias, called inappropriate sinus tachycardia. It's an electrical problem. I have a half-sister with atrial fibrillation, also an electrical problem. But I am the only one in my generation to have scoliosis, also. I have two children who have/had scoli, but not lefties. I don't know about the others in my family, but I'm pretty sure my niece has a right handed curve. HOWEVER, her curve is similar in size to mine or less and is also painful. Hers is a mid-thoracic curve. I wonder if the pain component is hereditary. Both my son (resolved JIS) and daughter (mild AIS) complain of back pain. My eldest son is unaffected.

I've also thought I drew the short stick in my parent's gene pool as well. In addition to the above, I'm the only one of my siblings with asthma and muscle dystonia.

I looked up left convex scoliosis on some other website and found that 40% of us also have a Chiari 1 malformation. I started a thread on it awhile back. It doesn't look like I have that problem, but my brain appears to be low lying on my MRI. It just seems that there are so many differences in us lefties. I'm wondering, too, in particular about high and tight lefties. I think that this is even more rare. I really would like to speak to a doctor that has more knowledge about this specific type of scoliosis. I'm just not quite sure how to go about it.

At what age did you get your diagnosis of dystonia?

Yes, my heart skipped a beat a few years back when I read the likelihood of Chiari is higher in us lefties, but apparently I don't have that particular malformation. One takes one's luck wherever one can!

In our family, my maternal grandmother had a mild scoliosis but apparently without pain. At least she never mentioned it. She was the only one of 5 sisters to have it, she had four daughters including my mother, none of whom had it. I'm one of three daughters and a son, the others don't have scoliosis. And between us three sisters, we have 6 female children, none of whom have it. I now have three granddaughters and I'm crossing my fingers.

As far as I know, nobody in my family from great grandparents down, died of this AHC that I have, so who knows where it came from. I'd love to know more.

rohrer01
02-21-2013, 03:12 PM
At what age did you get your diagnosis of dystonia?



It was last year, so I was 43. But I've probably had it for over 30 years, since my pain and other symptoms have consistently been the same for that long. Only the older I get, the worse the pain gets.

I get the severe headaches so I was really concerned about the Chiari 1 malformation. I still wonder how low lying the brain actually has to be to bring on some of the symptoms of Chiari. I know headache is only one symptom and as far as I know that is the only symptom I have. On the flip side, migraines run in my family. My mother suffers from them, my maternal uncle, my brother (now deceased), me and my two sons. It's all on my mom's side of the family. I have no idea about whether my grandma or grandpa had them. I suspect it was my grandmother. She was always sick in bed from pain. She had polio as a child and it is a known fact (now, not back then) that it can come back on a person later in life and cause a pain syndrome. She could barely walk and took morphine injections. She died at 59. So there's no way for me to know if she had the migraines for sure.

JenniferG
02-21-2013, 03:30 PM
I'm aghast that your dystonia pain is worsening as you get older. I know you will have done your research as to what treatments are available. Is there any hope for a treatment/cure? Is there any research going on?

rohrer01
02-22-2013, 02:48 PM
I'm aghast that your dystonia pain is worsening as you get older. I know you will have done your research as to what treatments are available. Is there any hope for a treatment/cure? Is there any research going on?

My scoliosis pain is also getting worse. If I get hugged too tight or even bring my shoulder blades back too far, the pressure on my spine really hurts badly. Also, jumping on a trampoline is OUT. I tried it several years back with my niece and the compression on my spine was a sickening feeling.

As for the dystonia thing, this is all new to me. All of the stuff that I've looked up primarily applies to people disfigured with the disease or people with chronic tics, neither of which applies to me. Some of the fibromyalgia stuff seems related in that there are trigger points, tiny areas of muscle spasm. However, when I asked my doctor about it, he said that people with fibromyalgia have very quiet muscles. He also said the only two groups of people with "noisy" muscles are stroke victims and those with muscle dystonia. He said I definitely did not have fibromyalgia because of the noisy muscles. (noisy on an emg study)

So I have a lot more research to do. But, I still think it all boils down to being related to the scoliosis. It may be the answer as to the "why" some people have pain and some people don't AND that degree of curvature is NOT related to severity of pain in scoliosis. That's my hypothesis. I just wish there were a way to test it out. =)

JenniferG
02-22-2013, 06:46 PM
My scoliosis pain is also getting worse. If I get hugged too tight or even bring my shoulder blades back too far, the pressure on my spine really hurts badly. Also, jumping on a trampoline is OUT. I tried it several years back with my niece and the compression on my spine was a sickening feeling.

As for the dystonia thing, this is all new to me. All of the stuff that I've looked up primarily applies to people disfigured with the disease or people with chronic tics, neither of which applies to me. Some of the fibromyalgia stuff seems related in that there are trigger points, tiny areas of muscle spasm. However, when I asked my doctor about it, he said that people with fibromyalgia have very quiet muscles. He also said the only two groups of people with "noisy" muscles are stroke victims and those with muscle dystonia. He said I definitely did not have fibromyalgia because of the noisy muscles. (noisy on an emg study)

So I have a lot more research to do. But, I still think it all boils down to being related to the scoliosis. It may be the answer as to the "why" some people have pain and some people don't AND that degree of curvature is NOT related to severity of pain in scoliosis. That's my hypothesis. I just wish there were a way to test it out. =)

I agree that degree of curvature isn't related to severity of pain in scoliosis. We see that here quite a lot, on this forum. It's always surprising to read about examples of large, pain-free curves.

Good luck with your research. I hope you have access to specialists who can advise/treat you along the way especially one who can ease your pain effectively - somehow.

Pooka1
02-22-2013, 07:54 PM
So I have a lot more research to do. But, I still think it all boils down to being related to the scoliosis. It may be the answer as to the "why" some people have pain and some people don't AND that degree of curvature is NOT related to severity of pain in scoliosis. That's my hypothesis. I just wish there were a way to test it out. =)

That's a good hypothesis! That could very well be correct.

I think the fact of your pain since you were a child argues for something out of the ordinary. You probably do not have JIS. Maybe something with your muscles caused the scoliosis.

I just hope you get some relief.

rohrer01
02-23-2013, 09:16 AM
Good luck with your research. I hope you have access to specialists who can advise/treat you along the way especially one who can ease your pain effectively - somehow.

Thanks, Jennifer. I do have "some" help with pain management, but it's not sufficient for me. I would like to be off narcotics and that just isn't possible and is very frustrating. I don't think many people understand this disorder as it relates to scoliosis, if any. Everyone tells me I'm a unique case and they don't see many people like me. As for my surgeon, as far as I'm concerned he has zero experience with people like me. Because of this he has no idea what my surgical outcome would be and treats me like all other cases of typical AIS. Therefore leaving me with no surgical option, which is okay. I don't want someone without experience operating on me and messing things up worse.

rohrer01
02-23-2013, 09:26 AM
That's a good hypothesis! That could very well be correct.

I think the fact of your pain since you were a child argues for something out of the ordinary. You probably do not have JIS. Maybe something with your muscles caused the scoliosis.

I just hope you get some relief.

Thank you, Sharon. Being that I'm the low man on the totum pole as far as biologists go, I haven't a clue how to go about even finding the right people to look into this. I think you are probably right about a muscular cause for the scoliosis. As far as pain relief for me, it's a whatever. I try to survive and have good days and bad days (mostly bad days lately).

Do you remember that guy, Davis, who had a curve in the 20* range? He found a "surgeon" to perform a scoli surgery on him. He just kind of disappeared off of the forum and no one ever heard about his outcome after surgery. I would be curious to know how things went for him. I suspect he may have a similar problem as me. I find it hard to believe that any competent doctor would operate on such a small curve, but maybe the guy was truely in a ton of pain and that's all the doc could think of as a solution. Maybe this doc was on to something. He was applying for membership in the SRS if I remember correctly.

rohrer01
03-09-2013, 08:23 PM
I have my shoulder MRI results. I have a torn and retracted ligament and a tear in the sac around the joint. Oh, yeah! NOT! I just found out that a friend of mine went to the same chiro as I did and that is how her shoulder got messed up, too. She also needed surgery. How many more people has this chiro done this to? They gave me a steroid injection in the shoulder to help ease some of the inflammation and pain then scheduled me to see a shoulder surgeon ASAP. I was instructed to do NOTHING that causes any discomfort or pain to my shoulder. I was trying to do some gentle strengthening, even though it was painful. I was told to stop. My scoliosis is making matters more difficult since my right scapula overlaps my spine during certain movements. I'll have to wait and see if it will be a significant factor in my recovery when I see the surgeon. I don't think I can avoid surgery if the ligament is torn completely off. Ugh...=(

Oh, I was told I had very floppy joints, too. That's not the first time I've been told that. The floppy joints may be a factor in recovery. She said it wasn't normal to have joints like mine. It leads me to believe I have a connective tissue disorder. I could be wrong, but I don't think I am.

Pooka1
03-09-2013, 09:12 PM
Wow very sorry to hear that! My husband tore his rotator cuff and that was a huge deal to fix that and do the rehab. At least you have a diagnosis and they can fix this.

JenniferG
03-09-2013, 09:20 PM
I'm so sorry to hear this news.

Are you going to speak to the chiro? I am concerned about his future patients. He's doing something wrongly and needs to know what damage he's causing.

Hope you can get your shoulder fixed soon and that it heals smoothly.

loves to skate
03-10-2013, 01:17 PM
Rohrer,
I am so sorry to hear this news also. Rotator cuff surgery is a piece of cake. It is the recovery that is difficult, but as they say here in the South, "get er done"! I think this Chiro needs to be reported if he won't listen to you. Maybe he needs to be sued to make him wake up and realize he is doing damage to his patients. Another good reason not to go to Chiro's.
Sally

rohrer01
03-10-2013, 06:09 PM
Thanks for all of your encouraging comments. I was looking at my MRI report and all of my rotator cuff muscles and tendons are okay, except some minimal tendinosis of the supraspinatus tendon. Tendinosis is a chronic condition not to be confused with tendinitis. Anti-inflammatory medication doesn't work on the pain from it. When it gets bad enough, they dissect out the worst part and sew the muscle back to the good portion of the tendon. I suspect that this is what caused my "initial" pain. So, IF I end up having surgery for this, it won't be rotator cuff surgery, per se.

The real problem is what's called a HAGL lesion, which is the inferior glenohumeral ligament (the one that holds your humerus - upper arm bone - to the shoulder socket). It's torn completely away from my humerus and is retracted, leaving me with a joint that wants to dislocate. There is also a small separation of the labrum (cartilage that attaches to part of the scapula that forms the "socket"). After looking at shoulder anatomy online for literally hours today, it looks like the labrum is in the area where that main ligament attaches to the socket. But the ligament is torn off of the arm bone. Ugh!

ligaments = hold bone to bone
tendons = hold muscle to bone

They have to drill away the original attachment site on my upper arm bone (humerus) in order to reattach the ligament. When I looked it up, several sources said it depends on certain circumstances whether or not it can be fixed arthroscopically. Otherwise it's an open surgery. Double UGH! I don't know how they will fix the tear in the labrum.

There's also a couple of other things in this report that I don't quite understand. Hopefully they are minor.

For some reason this surgery scares me worse than the prospect of spinal fusion. I don't know why. It may be because I've always had in the back of my mind that I will someday need a spinal fusion and have come to terms with it?? This shoulder thing has just been sprung on me and is very painful already. I've heard people say that shoulder surgery is the most painful surgery they've ever had. =(

I haven't talked to a shoulder surgeon, yet. Maybe they will calm my fears and this isn't really as bad as it sounds.

As far as the chiropractor goes, I haven't told my primary care provider about the actual damage, yet... He was livid, to put it mildly, when he examined my shoulder. I know he's going to call the chiro, especially when I tell him about my friend. I had to hold him back as it was before we knew how bad the damage was/is.

The really sad thing is, this chiro is a REALLY NICE PERSON with very good intentions. I hate to bring horrible things upon someone so nice. But... this can't go on. People are getting seriously hurt to the point of requiring surgery. Sigh... nice =/= qualified.

I should have kept my mouth shut about the "sore" shoulder.

...and to clear the air as to why I went to the chiro, again, when I don't even think they can help with anything... I had to sign a pain contract with the pain center that I would follow ALL of their suggestions for pain otherwise they could refuse to treat me. When my epidural didn't work last September, the doc told me to try chiro again. Then when I got hurt, he asked me "Why did you go to a chiro?" I said, "You told me to!" It really was messages passed between me and the doc through the nurses, so I don't think he remembered telling me that, or else the nurse just made it up. Anyway, to uphold my end of the agreement, I went. That's my story and I'm stickin' to it!

rohrer01
07-02-2013, 03:15 PM
Okay, this whole shoulder thing has been dragging out. I went to one shoulder specialist and he was confused by the report vs. my symptoms. The MRI shows a very loose, open socket with a torn ligament. My symptoms suggest frozen shoulder. Soooo, he wanted me to go back to PT again for 8 wks and come back for an evaluation. He and the PT guy thought dry needling might help loosen things up. I said no, I'll get the trigger point injections there instead. The only difference is dry needling is without lidocaine and trigger point injections use lidocaine or other numbing agents. So then the ortho shoulder doc wanted me to get a second opinion, exchange ideas, then come to a decision.

Meanwhile, I go back to my PCP and tell him what is being said and done/not done. He agrees with the injection route and administers them.
So the trigger point injections made it MUCH worse. So whatever information that gives them. My range of motion decreased and my pain increased.

Today I get my second opinion with another ortho shoulder doc. He's really nice and personable but not listening to me. He insists it's frozen shoulder and gives me yet another steroid shot in the shoulder. That's #3 within the last three months just in the shoulder. I'm supposedly allowed ONE more in the shoulder within a year. He's not hearing that I'm telling him my shoulder dislocates during the night if I roll on it and has to pop back into place for the pain to subside. He told me I can't have symptoms of shoulder stiffness and instability at the same time. I'm thinking maybe it's inflamed and stiff from popping out of socket so much throughout the day. But never mind what I think. He told me to forget I have the HAGL lesion and that it will never cause me a problem. Huh?

So I'm supposed to go back in six weeks for another steroid injection, meanwhile stretching my shoulder. It doesn't stretch. It gets to a certain point and feels like it's going to dislocate and just plain hurts. Yes, I may have symptoms of frozen shoulder. I don't know. But what the heck? I feel like my appointment in August is going to be another waste of time.

Meanwhile, the GREAT news is, my lower back suddenly quit hurting. I think it's a new exercise that I'm doing on the Wii Fit Plus game. I'm not going to complain. It hurts once in awhile, but not to the degree that it did. I could barely walk in the morning, and getting up made it hurt worse. I got plenty of rest. Maybe that's what it needed, too? I played the game on days that it didn't hurt as bad. Now it rarely hurts. So I'm cutting back on my pain killers (oxycodone), but honestly this shoulder is what's keeping me on it now. Well, my neck, shoulders and upper spine are starting to hurt more, the more I cut back. But it's Botox time again this month. So I'll see if that doesn't resolve that problem. I hope it will, then I can just take a pain pill when my shoulder is out of control (which is most of the time). I'm frustrated about the shoulder to no end. So much so that I feel like screaming!

loves to skate
07-03-2013, 03:41 PM
Hi rohrer,
I am so sorry you haven't been able to get to the bottom of your shoulder problem. I can imagine how frustrated you must be and of course sick and tired of the pain. I wish I had an answer for you. Anyway,I am glad that your back is feeling so much better. If it isn't one pain, it's another, or so it seems. You will be in my thoughts and prayers.
Sally

rohrer01
07-03-2013, 04:29 PM
Hi rohrer,
I am so sorry you haven't been able to get to the bottom of your shoulder problem. I can imagine how frustrated you must be and of course sick and tired of the pain. I wish I had an answer for you. Anyway,I am glad that your back is feeling so much better. If it isn't one pain, it's another, or so it seems. You will be in my thoughts and prayers.
Sally

Thanks, Sally. The same for you. You have your own stuff to deal with, too. Did you get your labs back from today, yet? I hope all went well!

rohrer01
08-01-2013, 10:40 PM
Okay, so I already have an arrhythmia in the class of SVT's. That's not new news. Here's the kicker. I've been having angina-like symptoms and have been put on nitro. I've had to use it twice and it instantly relieved the chest pain. So I go and see a new cardiologist, who orders a CT/angiogram (yes, now I'm full of radioactivity AND radiation). It comes back perfect except for this little snippet of information:


"some what deformed configuration of heart due to underlying scoliosis but essentially normal cardiac structures."

They say that scoliosis of my degree doesn't affect the heart in any way. Well, maybe it's because I have such a high curve? Either way, here's the proof. Scoliosis in the 40* range DOES affect the heart. I just thought you all might want to know this for yourselves.

Have a great day! er...night.

rohrer01
08-05-2013, 08:54 PM
I went to the orthopedic doctor today for my shoulder. I'm having surgery on September 5th. He's not going to repair the HAGL lesion (ligament torn from the bone), but is planning on snipping the tendon to the long head of my biceps to allow for more range of motion. It's expected that I'll lose about 10% of the strength in my arm. I hope it's not noticeable. He'll also be cleaning up any scar tissue he finds and fixing anything else he finds in there. I'm only hoping that my shoulder doesn't start dislocating worse than it already does when he "fixes" it. He's afraid of fixing the HAGL because it's difficult to do and recover from AND he's afraid of causing a reduction in range of motion. BUT, if I start having dislocations, I'll have to have it repaired later. I hope it's one stop shopping for me and my shoulder gets better without having to have a round two.

Susie*Bee
08-06-2013, 07:18 AM
Dear rohrer-- thanks for letting us know the latest. That sounds like a good plan. I take it yours is from an injury-- from the chiro??? One of my daughters had problems with dislocating shoulders-- she played basketball and had to sit out a year because of it. Trauma (emotional)... but it had to do with loose ball and socket in some people.

I will certainly pray that this is a "one stop" surgery for you and will alleviate your problem. Best wishes-- you are one special person! Hugs, Susie

Susie*Bee
08-06-2013, 07:28 AM
Dear rohrer-- thanks for letting us know the latest. That sounds like a good plan. I may not have tuned in completely before-- have you had dislocation problems in the past? One of my daughters did-- she played basketball and had to sit out a year because of it. Trauma (emotional)... but it had to do with loose ball and socket in some people. She managed mostly.

I will certainly pray that this is a "one stop" surgery for you and will alleviate your problem. Best wishes-- you are one special person! Hugs, Susie

Susie*Bee
08-06-2013, 07:32 AM
Dear rohrer-- thanks for letting us know the latest. That sounds like a good plan. I may not have tuned in completely before-- have you had dislocation problems in the past? One of my daughters did-- she played basketball and had to sit out a year because of it. Trauma (emotional)... but it had to do with loose ball and socket in some people. She managed mostly.

I will certainly pray that this is a "one stop" surgery for you and will alleviate your problem. Best wishes-- you are one special person! Hugs, Susie

PS-- You are really a strong person. I know you will come through with flying colors. I will pray for peace of mind and strength to face what is ahead as well. I know you are anxious. Shoot, I am anxious because I am having a colonoscopy tomorrow and I have to do the prep today, plus I have a migraine! Small potatoes, as they say. Just remember how strong you are and that the Lord will help you through this. I have known people who had shoulder surgery and they were fine-- just sore. My preacher did a couple of days ago.

rohrer01
08-06-2013, 11:19 AM
Thanks Susie!
Actually I have a very large socket and loose shoulders. That's why they can't figure out what's really going on. I am really concerned that they don't want to fix the HAGL. I think I had some bursitis and tendonitis (eventually tendonosis). The chiro finished me off by dislocating my shoulder and causing the tear and subsequent inflammation and possible scarring. The doc finds it hard to believe that a chiro could have done this. He wasn't the one living through that traumatic adjustment. I can't prove it, but that's my theory. I'm not scared about the surgery, though.

jrnyc
08-06-2013, 12:54 PM
hey rohr
just saw the date for your surgery....
thoughts and prayers will be with you the entire time...
no one wants to need surgery....but since it is necessary,
perhaps September is a good month...
the weather will get cool enough to not suffer from extreme
heat, in case you are allowed to get out and walk around while healing.
i hope the surgery goes smoothly and the recovery is uneventful...

jess...and Sparky

rohrer01
08-06-2013, 07:52 PM
Thanks, Jess.
It's a same day surgery, so I'll be going home afterward. I'll be able to go out and walk. The shoulder is a long ways away from my legs! LOL

Honestly, I thought more people would be interested in how a moderate curve like mine can squish and deform the heart. My question for that is IF I ever have surgery and room is made for my heart, will it try to expand to normal shape? If so, will the valves malfunction because they are deformed to fit the deformation of the heart?

People have always said that there's no real risk to the heart <100o. I'm seriously doubting that theory right now even though I'm okay and my heart function is good. What would happen if I wanted to be an organ donor and donate my perfectly healthy deformed heart to someone with a normal chest capacity? Just some thoughts.

mabeckoff
08-06-2013, 09:20 PM
I hope that all goes well with the surgery and that you get some relief

Melissa

jrnyc
08-06-2013, 11:17 PM
hey rohr
maybe those questions could be directed to someone like Dr Hey...
maybe you could e mail Dr Hey and ask him if he has seen it before,
how often...etc...
he is one surgeon who might be interested in it...

it will not be the first theory in medicine that did not prove to be true, nor
the last...
more and more, i look at theories in medicine with a doubtful eye...

jess

rohrer01
08-07-2013, 01:28 AM
Dr. Hey is done with me. He cancelled my appointment a couple of years ago without explanation. I don't think he'd want to hear from me for sure.

jrnyc
08-07-2013, 05:57 PM
sorry rohr...i wasn't aware of that...

jess

rohrer01
11-05-2013, 01:57 PM
Well, shoulder surgery is exactly two months behind me. Honestly, it was the easiest surgery I have ever had with the longest recovery period. How paradoxical! So what they found:
Lots and lots of red and inflamed cartilage, lots of thick bands of scar tissue (frozen shoulder), and the upper bursa being packed with scar tissue instead of the nice clear fluid that's supposed to be in there. My upper bicep tendon looked pretty good, just a little inflammation in one spot. So I got to keep it intact. YAY!

What was done: removed upper bursa, cleaned out and debrided the scar tissue.

I woke up from surgery in NO PAIN because of the brachial plexus nerve block. Doctor came in and explained to me how he was going to fix the HAGL with an open incision and bone graft if I start dislocating. That is super incentive for me to work really hard at my PT and get STRONG!!! My range of motion is already in the normal range for people with normal mobility, YAY!! It improves daily and I am able to use my arm "almost" to its full potential. I can't hang from it, yet (Yessss, I had to try that out when we took grandson to the park). It's not strong enough for that and I can't support very much hanging weight without pain. I had my feet on the ground so wasn't dangling, just testing limits. There's a few other probably stupid things that I've done to test my limits. But, I'm very careful. I can tell by the feel in the joint that some things are just off the plate. I'm thinking that this may be a permanent thing due to the HAGL, but not worth having an open shoulder surgery over.

The first night was a bear after the nerve block wore off. I was too overcautious to take more meds. My oxycodone was only upped by 20mg from what I was taking. But the nurse thought it meant 60mg more than what I was taking. We were never sure so I erred on the side of caution. After that first night and taking 10mg of oxycodone every four hours round the clock, my shoulder pain was well managed. I did eventually start taking a little more only IF I really needed it. I'm still at that dose. They told me that they don't even consider lowering the dose until THREE months after a joint surgery like that. Right now, my worst pain is in the lower back again. My relief didn't last, but then again neither did my little exercise trick. It could have just been the steroid working on the inflammation or the exercise or both.

I got another lumbar epidural today because I have once again been reduced to crawling because of the lower back pain. Fortunately, I haven't had to crawl every day. Only one or two days as of late that it's been that bad. But sleeping is horrendous because of lower back pain. If the epidural doesn't work to eliminate my left leg pain, we are going to try an SI injection in a few weeks. Hmmmm.... I'm sounding like Jess! That makes me a little fearful. However, I don't get these shots every three months.

On the down side, my pain doctor tested me for some symptoms of Muscular Dystrophy and some of the test warranted further investigation. I go in tomorrow to see a neurologist to get the full work-up. If it is MD, that would explain just about every ill that I have. I just have too many symptoms to ignore. I won't be too terribly upset if I have it, so I want to know either way. There may be better ways to treat my symptoms if that's what it is. That also give me more incentive to get back to the gym regularly and try to build up some muscle mass while/if I'm still able. My dad didn't even try to maintain muscle mass. I think he enjoyed the pampering a little too much until it got to the point where it was too late. I'd rather know so that I can stave it off for as long as I can. My dad wasn't diagnosed with it, but when I tell my doctors about him it's pretty consensual that this was likely his primary problem. He was the victim of a horrible insurance plan and was never tested.

So, I'll post the results of what happens on all fronts as I find out. I hope you all have a wonderful day!

loves to skate
11-06-2013, 10:38 AM
Rohrer, I am so glad that your shoulder surgery has been successful. It is interesting that it takes a long time to completely heal. What if anything can be done for you if you do have Muscular Dystrophy? I know we usually think of MD as a childhood disease, but I know of one other adult who was diagnosed with it. My thoughts and prayers are with you.
Sally

rohrer01
11-06-2013, 07:06 PM
Thanks, Sally!

Muscular Dystrophy isn't always a childhood disease. Those are Jerry's Kids that we hear the most about, but it is commonly in the adults before the DNA repeats get bad enough to affect the kids. But in hindsight, I've had symptoms as early back as I can remember. I went to the neurologist today and he confirmed that I do have muscle "disease". He's 80% sure he'll be able to give me a correct diagnosis. I have to have some specialized EMG studies and muscle biopsies. Then, if warranted, I'll get the DNA test to confirm the kind of MD it is. He also mentioned Ehler's Danlos Syndrome. So far, that's all I know.

Pooka1
11-06-2013, 07:42 PM
Wow Rohrer, you have been through the mill.

I hope you get a diagnosis.

jrnyc
11-06-2013, 08:07 PM
hi rohr
glad the shoulder surgery is healing...i had heard any surgery in that
area is tough to heal from....hope you take it slow....
not easy....but necessary...

i hope you do not get a diagnosis of MD...but i guess it would explain
alot...i still hope that is not what you suffer from...
and i hope the doctor has some treatment in mind for you...?

i fondly remember the SI joint shots....how much they helped, how
i could walk without much pain at first...they lasted 3-4 months for
pain relief...and gave me so much relief...but i needed alot of steroid
to accomplish it...i hope you do not need as much, because that is
what led to my being overdosed with the stuff....
let us know how the shots help you...

take good care of yourself...
rest and heal and be good with your PT...and you will be in better
shape to greet the spring, when it is nice and warm outside again...

jess...and Sparky

rohrer01
11-07-2013, 10:33 AM
Thanks, Sharon and Jess.
We're pretty sure it's MD. I have a lot of symptoms. Based on my dad's history it's looking like Myotonic Muscular Dystrophy and possible Ehler's Danlos Syndrome. Ironically, my mom is the loose jointed one and my dad the one with probable MD. He died in the typical MD fashion two years ago. The doc did some strength tests yesterday that I've never had done. I failed miserably. I had NO IDEA that I even had weaknesses in the areas that he checked. He explained that I could no longer do the heel walk because the muscles on my shins are too weak. He didn't even ask me to do that, probably because I couldn't hold my foot up against any resistance. I'll know more once my testing is complete. I'll let everyone know when I find out. It could be that my scoliosis is a side effect of whatever is wrong with my muscles and connective tissue. That's no surprise to anyone, I'd think. I honestly think that the "idiopathic" will be taken out of scoliosis diagnosis some day. It may be termed scoliosis secondary to (whatever the person has). That's just my honest opinion.

rohrer01
01-07-2014, 04:10 PM
For those that are interested, I thought I'd touch base with everyone about how I am doing.
I have had a rough couple of months to put it mildly. My lower back pain got so bad that I couldn't roll over in bed. We tried the epidural followed two weeks later by the SI injection (WOW did that ever HURT!!!). The pain of that injection mimicked the pain I was having and my leg immediately had strange sensations where it was previously painful. I was really hopeful that this would work. It did. Eventually. It took the full two weeks to kick in. I was hoping to lower my pain meds, but it brought it down to a level that the pain meds were able to work their magic so I have had times with little to no pain in my lower back. I am starting to lower my dose SLOWLY so the pain doesn't kick in and overtake me.

As far as my MD testing goes, I don't know much. So far 18 of the over 30 blood tests have come back relatively normal. There's a little high blood sugar but not bad. I had an EMG done which was also relatively normal. That was actually BAD news because I think the doc was quite sure that I have Myotonic Dystrophy which usually shows up on the specialized EMG. He looked frustrated when he said it wasn't MMD. I say bad news because if you're going to have dystrophy that's the "best" one to have. I've had a muscle biopsy done. No one told me in advance that they don't deaden the muscle before they take it!!! I was told in the exam room right before the procedure. It was quite more of a little operation than I thought. For some reason I thought they would just numb me up and jab me with a big hollow needle and take like a core biopsy. NOPE. Nothing doing. I have about a 1-1/2" (4-5 cm) incision. They had the little spreaders and everything in there. I have several layers of stitches in there where they closed it. It's still a little scabby after over a month. Oh, well. It matches my other arm. I don't have those results and will see the doctor in February.

Meanwhile, I've had trouble eating and I've had either influenza B or colds or both (three things back to back). It's knocked me off my socks, literally. I started baking cookies to try to keep my weight up. I'm having trouble with intestinal cramping and sometimes even swallowing when I eat. A few days ago I weighed in at a whopping 116#(52.6 kg). I weighed myself again last night to see if I gained anything and I dropped to 113# (51.3 kg). I have no energy to do anything.

The thought just occurred to me about what happened to Jess. I hope my cortisol is fine. I've had a lot of steroid within the last several months between my shoulder and my back. Hmmm.... I see the doctor on Friday. I'll ask him. It could be stress, too. I, like everyone else, have more things going on in my life than my health issues.

Take care, everyone, and stay well!
Rohrer01

jrnyc
01-07-2014, 06:16 PM
hi rohr
PLEASE...ask the doc to do a blood test for cortisol and ACTH...the latter test, in my experience, is done at hospital lab as i was told it had to be processed right away...
simple blood test...and maybe the doctor can think of possible things that can cause exhaustion to rule them out, besides checking cortisol function...

i just had blood drawn a few weeks ago...my cortisol was at 11, which is good, but down from 14...with no apparent reason...the thing that bothers me is that i am scheduling a steroid shot in left hip for February....supposed to have it sooner but doctor was running really late last time, etc...

my GP is not happy with my decision...but i am in SO much back
pain...plus bursitis in left hip....and i cannot even take Advil, per my GP...so...no anti-inflammatory meds...none...i am going to steroids
in desperation...and i only dare risk one shot...if it doesn't help...
i cannot risk more steroid...

it amazes me that more pain doctors do not think of SI shots...
they seem to work so well, so often, for so much back pain...
alot of lower back pain seems to be helped by shots in sacroiliac
area...

hope you feel better...
jess...and Sparky

rohrer01
01-08-2014, 02:13 AM
Thanks for the advice, Jess. I will ask him.
I weighed in tonight at 112# even (50.8 kg). I'm a tall woman so this isn't good at all. Food just doesn't taste good. I eat anyway, but surely not enough. I'm going to the health food store tomorrow to see what tasty things they have there to stimulate my appetite.

My lower back and left SI are hurting along with the pain down my left leg. I caved and took the dreaded extra pain pill and am in my "special bed" (craftmatic adjustable bed). It seems to be the only bed that doesn't hurt my back, especially if I'm already in pain. The last time I saw the pain doctor he talked about fusing my L5/S1. I told him no way, it's only classified as "mild" DDD. However, it's in an area where I have Spina Bifida Occulta. I doubt if that has anything to do with it. They create fake SBO's by doing laminectomies. He showed me on my last MRI that I do have a pinched nerve root on the left as compared to the right. He'll probably order a repeat MRI. I'll wait for it to get much worse again before having the MRI because the inflammation is still reduced from the shot. I'm terrified that if they fuse my lowest lumbar that it will destabilize my spine since my hips aren't even and I'm kind of twisted, too.

loves to skate
01-11-2014, 02:10 PM
rohrer,
So glad the steroid shot kicked in to reduce your pain. Have you tried Boost to keep up your nutrition and weight? I drank Boost daily when I had the C. Diff and it really helped. The taste isn't too bad either. I hope the Dr. appointment will give you the answers you need.
Take care, Sally

rohrer01
01-11-2014, 04:29 PM
Thanks, Sally.

Sorry, Jess, I didn't ask about the cortisol. I realized the other day that my heart is what's been making me weak. It does that when the tachycardia flares up. I realize that cortisol can affect the heart function as well, but this has been an ongoing problem. I'm weak from being sick for so long, having the tachycardia, losing too much weight from my eating difficulties, and some significant depression due to family issues. I WILL get through this.

My doctor changed me from a Beta blocker to a Calcium Channel blocker. I haven't started taking it, yet. I will start that next week. I weighed in at a whopping 110# fully dressed at the doctor's office. I talked to him about it since I've never been this light since I was still growing and about 14 years old. He said the new heart medicine does have some effect on the smooth muscle in the esophagus and might help with my swallowing difficulties.

Meanwhile, my lower back hasn't been too bad, but my upper back, neck and shoulders have been really painful. It's time for Botox this month, so that doesn't surprise me.

To address your question about Boost or Ensure or any of those other liquid nutritional drinks; they're a no go with me because they all have something in them that disagrees. I think it's the Whey protein. They all give me instant diarrhea and then ALL my food, medicine and calories literally go down the toilet. Sorry for TMI. I found a vegan protein drink that I'm going to try for extra protein to help ward off my muscle loss. I also went an bought a bunch of Macadamia nuts to much on. They are a very high calorie source of protein. I can nibble, hopefully, without overloading my system. I already cook very high calorie, yet healthy, meals. My hubby is also very thin and has a very hard time putting on any weight. He can eat like a horse and not gain an ounce!

Thank you all for your concern. I promise that if my energy doesn't pick up, I will insist to the "right" doctors to get my cortisol checked. My GP isn't the one to do that. It would be those in Neurosciences/Physical Medicine/Pain Management that would do that since they are the ones treating me with the steroids. I have three different doctors working with me there.

I hope you all are having a good weekend!

rohrer01
01-29-2014, 12:42 PM
Again, for those of you who are following my story...

My cervical dystonia has taken a huge leap for the WORSE!
I live where it snows. When it snows you have to shovel snow. A couple of weeks ago we had a LOT of snow. It was supposed to be only a couple of inches but was more than a foot with blowing and drifting. Snow plows come by and plow up all of the packed ice and snow from the road and dump it into all of our driveways. This is PACKED and HEAVY!

So, I think I'm going to make things easier on myself and keep up with the shoveling so that I don't have to lift heavy shovels full when the storm is over. That's the only way to do it, really. My hubby couldn't do it because he was at work and would not have been able to park the car anywhere. We don't have enough area to shovel to warrant getting a snow blower (I might rethink that).

So everything was fine. I had really sore muscles, but kind of a good muscle pain that you get from exercise. Two days later it hit me, and it hit me hard! I started to get this pain that I get on the left from my shoulder and up the side of the neck and around the scapula. When it got to the point where it hurt to breathe and I'd taken all the oxycodone that I felt I could safely take, I called the doctor. I asked them if I could be seen that day, otherwise I WOULD end up having to go to the ER. My doctor, being the kind soul that he is, said to just come in and he would work me in. I called a friend to drive me because I didn't feel safe to drive and I didn't know if I would be getting more pain meds or not. By the time I got to the doctor's office, I had nerve pain down my whole left arm and my hand was swelling and turning red. This had NEVER happened before.

When I got into my room I asked the nurse if the doctor would consider giving me some trigger point injections and not just pain meds. She said that she thought that was what he was planning to do. So, he came in and examined my neck and back and just sighed. He said everything was just so tight! I still had bruising from the trigger point injections that I had done three or four days earlier. So, after careful consideration, he picked three more areas to try to release. One was right next to my lung on the inside of the collar bone (that's where it hurt to breathe). This is always a scary place for the doctors to work on with needles, especially without ultrasound guidance, because a poke a little too deep can collapse the lung. So, I got the three injections (more like digging around with the needle to break up the spasms) and no more pain meds, I went home. I was nervous because I was still in some pain. But, to my surprise, by the time I got home the nerve pain was gone and the swelling in my hand was GONE!

Fast forward a week. I went to get my regularly scheduled Botox injections this week. This is done under EMG guidance so that they can put the Botox into the tightest muscles. The doctor was examining my neck and upper traps and was just saying, "Oh! this feels like bone!" everywhere he touched. He'd ordered more Botox than usual and didn't remember doing that and asked me if I remembered him saying that he was going to increase the dose. I said no, I didn't remember him telling me that, either. It turned out to be a VERY GOOD thing that we had more Botox on hand!

Now, mind you, these shots are NOT painless. They do not numb you up, otherwise there would be so many more needle pokes. I usually tolerate these injections fairly well and might, at most, wince a little. The injections that day were so painful! Every time he put the needle in I got excruciating referred pain somewhere else that felt like a constant burn with electricity! It was going down my back and around my scapula on both sides. Then other ones went all the way down my arms into my thumbs. The one on the left was so bad that my arm involuntarily jumped up and contracted. The tears were running down my face (NEVER ever brought to tears by this procedure before!). I'm trying not to yell and just kept saying ouch, ouch, ouch! I didn't want to say anything but couldn't help it. The doctor is apologizing the whole time. When he was finally done I broke down and was just sobbing uncontrollably. It looked like the doc was holding back tears as well. I felt so bad for him! The pain in my neck was still so severe even AFTER the procedure was done. There was some residual pain still going down my arms as well.

I asked the doctor, through sobs, if there were any other treatments for this disorder. I am already on very strong muscle relaxants, get trigger point injections and Botox. He just looked at me sadly and shook his head and said that he wished there were, but that there wasn't anything more that they can do. He said that the muscles were pulling so hard on my neck that the wings of all of the vertebrae were all poking out visibly under my skin. He told me that next time if I'm experiencing discomfort before I get my Botox (I'm limited to every 91 days by my insurance) to call him and he would prescribe Valium to take until I came in for my injections. I told him that I already take Klonopin (a similar drug, also a benzodiazepine) three times a day. He said because I take it regularly my body is used to it, so adding Valium on top of it would help some. I also said that next time I wanted to be sedated. I am having some very stressful family problems. He told me that stress really aggravates this condition and hopefully I won't be so stressed out. He also told me very firmly, "Do NOT get cold! If you HAVE to go outside, double wrap your neck all the way up!" This kind of took me aback a little because he is so soft spoken. He wasn't mean about it at all. He just wanted to get this point across about the cold... We live where it's cold.

I also told him about the episode with my arm and hand a few days prior (during the procedure we chatted about it). He told me that my muscles were clamped down so hard that they were pinching off the primary artery and vein that go to my arm. With the vein pinched off the blood couldn't escape my arm and that's why my hand swelled up and turned red. He was really impressed at the other doctor's work with the trigger point injections and said that this is what allowed the muscles to relax enough to return the normal blood flow to my arm. I thought maybe the lymph vessels were pinched off. He explained that this couldn't have been the case since the lymph dumps into the areas below where my muscle spasms are.

Fortunately, my DIL wanted to come with me this day. I went back out to the waiting area and took a bunch of pain medicine and waited until I had the nerve to go outside to the car. I didn't even want to move. My neck felt like I had hornet stings all over and my arms ached. I thanked my DIL for coming with me. I was still crying. People were looking at me weird. Finally, the pain meds kicked in and we were able to leave. She drove home, of course!

So now I'm a little freaked out, to say the least! I never realized that this condition could get so bad that it cuts off the blood flow to my arms! I thought it was primarily a medical condition that cause pain and contortion of the neck. But, I have a lot more "respect" for what's going on now that I know that it can actually do real damage to my body. It's awful enough to live with chronic pain, but to know that the muscles are strong enough to cut off major blood supplies to other parts of my body is humbling and very scary. I definitely need to be more careful. It was always MY understanding that overdoing things would result in more pain. Now I know it's way more serious than that. =(

I hope everyone else is feeling okay. I feel really bad for those of you having trouble with broken rods, bobble head, and other weird seemingly unexplainable pain. For those of you going through this, please accept my cyber hugs!

Rohrer01

loves to skate
01-29-2014, 08:06 PM
Rohrer,
I am so sorry for the pain you have been experiencing. Unfortunately life is so unfair. I'm so glad you have a sympathetic Doctor.
Very gentle cyber hugs to you.
Sally

rohrer01
01-29-2014, 09:41 PM
Thanks, Sally.
I just never realized that there was any real immediate danger from my "disorders", just pain. Having major blood vessels pinched down by angry muscles is a HUGE wake-up call for me that this is more serious than I thought. I shouldn't balk at taking my meds like I do and just be thankful that I HAVE them. I imagine that people with tetanus experience things somewhat akin to my problem, only worse. Boy am I glad they have tetanus vaccines!

rohrer01
02-06-2014, 04:50 PM
I'm just reposting this here so that I don't lose the train of events that are occurring with me. This thread is like my chronicle.

My muscle biopsy came back negative for MD. My doctor (neurologist) said I'm a mystery. He's suspecting some protein defect somewhere along the pathway of energy production in the cells. He's thinking a mitochondrial defect. However, my sister and my DAD had/have similar symptoms. Our mitochondria come from our mothers. Hmmmm... He's sending me to a geneticist next month for a genetics work-up. I'll keep you all posted.

rohrer01
03-21-2014, 10:29 PM
As promised, I'm updating.
I saw the geneticist last week. She still thinks it's Myotonic Muscular Dystrophy after the physical exam. She mentioned Charcot-Marie Tooth Syndrome, but there are more dystrophy symptoms. She's testing me for both if/when my insurance approves the DNA tests. They are very expensive. She's also going to run a panel on mitochondrial defects, although she agrees with me that it doesn't make sense with my sister and my DAD having similar symptoms. The neurologist wanted her to run this panel, so that's why she's going to do it.

I had an almost emergency episode today. I'm glad it happened today and not over the weekend. It was another episode of my neck muscles clamping down on my nerves and blood vessels. I'm in cardio rehab because my arrhythmia isn't under control. I was having the pain in my arm then, actually I woke up with the muscle spasms in my neck. But they couldn't get a blood pressure reading from that arm at all. My regular PCP was completely overbooked, so I went to my doc at the Neurosciences department of the bigger hospital that's quite a bit farther away. I'm so thankful that he made the time for me! He spent over an hour. The subject of surgery did come up. He said there are structures there in my neck "trying" to do what they are supposed to do against the curvature. We talked about getting a second opinion and trying to find someone with experience in this type of rare curve. I told him that I'm not in good enough health to undergo a surgery like that right now. My heart isn't under control and I don't have any weight to lose. He agreed there. But I have a feeling this isn't going to be the last time this subject comes up.

Meanwhile, I will wait to get insurance approval for the DNA tests. If they find out what it is, then we'll know more about how to treat it. If it comes back negative for anything, that just means they haven't a name for what I have and I will be sent back to neurology for management. But, I look at it this way; if they come up empty-handed again, they at least have my DNA and a list of my symptoms if someone similar shows up. I have a gut feeling that it's going to show up nothing. That's how it goes for me. I'd rather KNOW what I have than to have some mystery illness.

Pooka1
03-22-2014, 07:55 AM
Well it sounds like you are going to get an answer and that you have a good set of doctors to work with. If the insurance pays for the mito work given your father and not mother has the same symptoms then I will be surprised but I guessed it it not impossible for something to show up there that isn't a mito disease.

Good luck, Rohrer.

rohrer01
03-22-2014, 10:45 AM
My docs don't have their medical records. So I guess there's no proof that their symptoms are like mine. It's just by what I tell them. But trust me, they are! My sister was going to run a 5k for work and had done so in the past (I think). When she was training for the run, she kept falling. She thought she was just being clumsy, but every time she went out to run she'd trip and fall! Her heart rate is also elevated, not like mine requiring medication. My dad's was not. But my dad had early onset cataracts in his 40's (MMD). My sister and I actually laughed about it when I was told that it was not normal for your hands to stay curled when holding on to something for a long time. When we'd play on the monkey bars as kids, we'd run around like little monkeys with our fingers curled! It only lasted a few seconds, though. But we had a chuckle. My dad was put through a lot of tests, but because he was in his 70's and had mini-strokes, they couldn't get that out of their heads and told him it was that. Toward the end but when he was still able to feed himself, he had a hard time putting his fork down because it wouldn't let go. When my sister and I talk about stuff, it's like, "Oh my gosh, me too!". They've diagnosed her with everything from MS, Parkinson's Disease, fibromyalgia, and now it's Left Hemiplegia of Unknown Origin. It's on both sides with both of us, but also worse on the left, especially in the legs. So...whenever I have a test done, I call her up and say, "I did this for us!" and she says, "Thank you!" She's tired of all the testing and hearing scary stuff and then they change their minds. So she's done. Now I pick up where they left off with my dad and sister and am having the "big guns" testing!

It's to the point now with me that I can no longer walk on my heels or toes. I feel very sad about that because that is something usually very easy to do. I look like a toddler trying to take her first step. The geneticist stopped me and said she didn't want me falling down. I was determined I was going to give it my best shot! It's really frustrating when you "think" you can do something so simple and then find out that you CAN'T.

So, hopefully this DNA testing will reveal something. I'm not really expecting it to just because that's the way it goes with me and my dad and my sister every time. But if it does, we will at least be vindicated of not being lazy hypochondriacs. My sister pushes herself and goes anyway. She's not as affected as I am. She doesn't have scoliosis, either. But her daughter does! Her daughter doesn't have a curve "like" mine, but it is at least as bad as mine and very painful at times where she cries and can't get out of bed. I guess I'll never know for sure if my dad had scoliosis. He never mentioned it, but had a lot of back pain. His mother had scoliosis. I think whatever is wrong "may" be tied around that scoliosis gene.

I told my parents I got their left-overs. I'm the youngest of 7. LOL Oh, and the sister that I'm talking about is my only full-blooded sister. The rest of my brothers and sisters are half from either mom or dad. We're 15 months apart. It's funny because she's short and I'm tall. It's always been that way. My mom always wanted twins. I never got my sister's hand-me-downs because we were always the same size. My mom used to dress us alike and everyone always thought we were twins! Then at around 12 and 13, I passed her up. She's only like 5'3"...LOL

LindaRacine
03-22-2014, 03:39 PM
Rohrer...

At least you'll never be boring to a doctor!

It sounds like you're close to getting a real diagnosis. I'm sure it will be nice to know, even if it doesn't change anything about your treatment. I have a friend with Ehlers Danlos, which is another rare disease that is not totally dissimilar to what you're experiencing. Watching her go through everything has made me realize how tough it is for those with rare diseases, as it can be difficult to know what treatments work best.

Hope you know soon.

--Linda

rohrer01
03-23-2014, 02:26 PM
Thanks, Linda.

I actually had one doctor tell me he thought I might have Ehler's Danlos because of my hyperflexible joints. My nephew DOES have Ehler's Danlos. The geneticist said I don't have it. My hands aren't limber and my skin isn't stretchy. Although I don't have stretch marks from pregnancy, I think she said that stretch marks from pregnancy ARE another thing that it causes. I have the soft skin, though. I'm pretty sure my daughter DOES have it. She can bend her fingers down completely flat with the palm of her hand and her skin is SUPER soft. Poor thing also got bad stretch marks and has silvery wrinkly scars wherever she's been cut. She can do other weird things with her hands that look kind of creepy. She also has mild scoliosis, easy bruising, delicate skin, and flat feet.

I have some kind of connective tissue disorder, just don't know what it is. Maybe a carrier of Ehler's Danlos would show "some" manifestations of loose jointedness, but not sure. There are lots of genetic things that work that way. I'm thinking it may be incomplete penetrance, where I am a carrier of the autosomal dominant gene, but do not have all of the classic symptoms. My daughter has so many of the classic symptoms that there's no question in my mind that she has it. But for MY health, it isn't an issue. My daughter would never get it checked out.

My family has kept the doctors on their toes. My doctors just say I'm a "mystery". They're baffled, especially when new stuff crops up. My PM&R doc seemed to be thinking that straightening out my spine might help. But, like me, he's afraid that once it's done, it's done. If it turns out badly there's no going back! I think that's the biggest fear on the forum with presurgery people simply because it doesn't always turn out as nice as we'd like. There's no one that I can find that's ever seen a scoliosis like mine. My heart should NOT be affected with a curve in the 40's, but it is.

You or anyone with a real interest are welcome to pass my x-rays along to scoliosis surgeons and ask some of your guys if they've ever seen anything like it. Especially the earlier ones before the lower curve progressed into the upper 30's. Then show them the progressive ones. Perhaps they will have seen it or know someone who has. THAT would be the doctor I need to see.

Pooka1
03-23-2014, 03:31 PM
Poor thing also got bad stretch marks and has silvery wrinkly scars wherever she's been cut.

My daughters have this. One got a minor scrap on her chin and it left a scar! That is crazy. The other has a few "smiley face" smiles coming off perpendicular to her surgical scar where the skin just seems to give way. Very strange. They are both being monitored for Marfans which if they don't get the aortic enlargement is not going to be an issue any more. If they make it to 30 without enlargement then they probably don't have Marfans or at least will not develop the aortic enlargement.

LindaRacine
03-23-2014, 04:36 PM
Thanks, Linda.

I actually had one doctor tell me he thought I might have Ehler's Danlos because of my hyperflexible joints. My nephew DOES have Ehler's Danlos. The geneticist said I don't have it. My hands aren't limber and my skin isn't stretchy. Although I don't have stretch marks from pregnancy, I think she said that stretch marks from pregnancy ARE another thing that it causes. I have the soft skin, though. I'm pretty sure my daughter DOES have it. She can bend her fingers down completely flat with the palm of her hand and her skin is SUPER soft. Poor thing also got bad stretch marks and has silvery wrinkly scars wherever she's been cut. She can do other weird things with her hands that look kind of creepy. She also has mild scoliosis, easy bruising, delicate skin, and flat feet.

I have some kind of connective tissue disorder, just don't know what it is. Maybe a carrier of Ehler's Danlos would show "some" manifestations of loose jointedness, but not sure. There are lots of genetic things that work that way. I'm thinking it may be incomplete penetrance, where I am a carrier of the autosomal dominant gene, but do not have all of the classic symptoms. My daughter has so many of the classic symptoms that there's no question in my mind that she has it. But for MY health, it isn't an issue. My daughter would never get it checked out.

My family has kept the doctors on their toes. My doctors just say I'm a "mystery". They're baffled, especially when new stuff crops up. My PM&R doc seemed to be thinking that straightening out my spine might help. But, like me, he's afraid that once it's done, it's done. If it turns out badly there's no going back! I think that's the biggest fear on the forum with presurgery people simply because it doesn't always turn out as nice as we'd like. There's no one that I can find that's ever seen a scoliosis like mine. My heart should NOT be affected with a curve in the 40's, but it is.

You or anyone with a real interest are welcome to pass my x-rays along to scoliosis surgeons and ask some of your guys if they've ever seen anything like it. Especially the earlier ones before the lower curve progressed into the upper 30's. Then show them the progressive ones. Perhaps they will have seen it or know someone who has. THAT would be the doctor I need to see.
Not to make it even scarier, but I think you have to consider what such a big surgery might set off medically. We commonly see patients who have things like fibromyalgia, MS, etc., that worsens after surgery. I have peripheral vascular disease for which the symptoms were pretty dormant before my surgery, but have raged back since then.

When I get some time with Dr. Berven (my surgeon), I'll show him your info. It's hard to catch him with an extra minute. He is super conservative, and really only wants to operate when patients are in a lot of pain and/or have radicular symptoms, and have run out of other options. We see curves similar to yours occasionally.

--Linda

rohrer01
03-23-2014, 10:07 PM
Not to make it even scarier, but I think you have to consider what such a big surgery might set off medically. We commonly see patients who have things like fibromyalgia, MS, etc., that worsens after surgery. I have peripheral vascular disease for which the symptoms were pretty dormant before my surgery, but have raged back since then.
c
When I get some time with Dr. Berven (my surgeon), I'll show him your info. It's hard to catch him with an extra minute. He is super conservative, and really only wants to operate when patients are in a lot of pain and/or have radicular symptoms, and have run out of other options. We see curves similar to yours occasionally.

--Linda

Well I don't have fibromyalgia for sure. They confirmed that with the EMG study. The doctor said that the muscles of fibromyalgia patients are very "quiet". Mine are extremely noisy. He said there were only two types of disorders with that loud of EMG's, stroke victims and people with muscle dystonia. My pain is muscular. They haven't for sure diagnosed MD, but everyone seems to think it looks a lot like that. I do have some peripheral vascular problems like mild Reynaud's. The BIGGEST problem, which is new, is dangerous and has to do with my upper curve and the dystonia combined. When the muscles clamp down, it not only pinches the nerves to my left arm cause excruciating nerve pain down my arm, but the dangerous part is that it is cutting off the blood flow to my left arm.

The first time this happened, I didn't realize that's why my hand was swelling. I just knew I was in a heck of a lot of pain with my arm and needed to be seen ASAP. This last incident yesterday wasn't as bad because I recognized what was happening before it got to that point. Luckily I found someone to see me and get those muscles released. The difficult thing is that some of those muscles are very close to my lung which extends into the lower portion of my neck. The muscles are also close to the jugular and the nerve (which he did hit). If I go to the ER over a weekend for this problem, they won't have a clue how to treat it and would likely dope me up on more pain meds and tell me to follow up on Monday. My PM&R knew it was serious enough that he dropped his other patients and came and spent almost an hour working to release those muscles. I had cardio rehab earlier in the day and they weren't able to get a blood pressure or pulse from the left. What would happen if I had to wait all weekend like that?

I feel like the biggest danger, at this point at least for surgery is the fact that I'm so darn skinny. I weigh a whopping 113# on a 7' scoliotic frame, slightly anemic, and hypokalemic. I have the muscle problem that will make it difficult to recover as I'm losing muscle and not gaining it. I'm losing neuro function, too. I can't walk on my heels or my toes anymore. This has all transpired in about the last year and a half.

I'm in a really bad predicament. I think they could control the heart thing with enough of the right meds. I don't know what about the digestive issues and my difficulty in swallowing. I guess an NG tube would take care of that temporarily in a surgical situation if I couldn't swallow.

Thank you. Even if you can't get anyone to look, it's okay. I need new x-rays. My newest ones are two years old and my lower curve is progressing if you look at my 2005 compared to my 2012 films. That lower curve used to be in the teens. As far as protective angle on curves, I don't believe there are any. I think it depends on other factors going on with the patient. That curve should have NEVER progressed.

I'll be requesting new x-rays for May. That will be, I think, exactly two years. Hopefully by then I'll know if anything shows on the DNA test (I haven't had it yet, waiting on insurance approval). They will also be doing another MRI. It sounded like he was thinking whole spine and not just lumbar because of what's going on up higher. So, probably by May I'll know more. I'll just hope nothing serious transpires between now and then. :-O

rohrer01
03-23-2014, 10:09 PM
My daughters have this. One got a minor scrap on her chin and it left a scar! That is crazy. The other has a few "smiley face" smiles coming off perpendicular to her surgical scar where the skin just seems to give way. Very strange. They are both being monitored for Marfans which if they don't get the aortic enlargement is not going to be an issue any more. If they make it to 30 without enlargement then they probably don't have Marfans or at least will not develop the aortic enlargement.

Maybe they should be thinking Ehler's Danlos. It carries similar cardiac risks and there is a genetic test. There are several "varieties" that they test for. They have located several "genes" that contribute.

loves to skate
04-01-2014, 10:08 PM
Hi rohrer1,
I have been away from the forum for a long time. I am so sorry for all your troubles. Rare diseases are truly problems for you and the Doctors. My thoughts and prayers go out to you.
Sally

rohrer01
04-06-2014, 09:55 PM
Hi rohrer1,
I have been away from the forum for a long time. I am so sorry for all your troubles. Rare diseases are truly problems for you and the Doctors. My thoughts and prayers go out to you.
Sally

Sally,
I just saw this. Thank you for your concerns and your prayers. It means a lot when we care about each other. I'm still waiting to hear from the insurance company if they will approve my DNA testing. She must be fighting with them! She's a really awesome doctor and doesn't seem one to take NO for an answer. I hate fighting with insurance companies!

My heart seems to be doing better since my potassium levels have been brought up to normal. I had an incident last weekend where I ended up in the ER because of my heart. I was having angina like symptoms which were helped by the nitro tablets. But then my heart took off like a racehorse! It went from 110 to like 117 to over 200 lying down! I know it's over 200 when I can no longer count the beats. So I called 911. By the time the paramedics arrived it has slowed way down to 120. By the time I got to the hospital it was in the 90's, then 80's, then 70's. I felt like an idiot. I took my heart pill and klonopin a little late and I think everything kicked in by the time I got to the hospital. But it turned out to be a good thing I went because my hemoglobin was only 10.6. Two weeks earlier it was 11.8. So something's going on. I haven't been back to the doctor, even though they wanted me to go right away because of the blood thing. My doctor was out of town that week and then they cancelled my Tuesday appointment on the 8th and moved it to the 10th because he has a conference to go to! I'm sure I won't drop dead before then. LOL

So it cost me $100 to find out that I'm losing blood somehow. There's no GI bleed. They embarrassingly checked for that and no occult blood was found. So I wonder which of my internal organs is chewing up my red cells? I guess we'll find out. I'll have blood work done on Thursday and I'll post the results here.

I know what I just said doesn't sound like my heart is doing better. It is better when I exercise. I still get tachycardia when I stand for too long or eat too much. The combination of the two is just pure disaster! LOL So it's not better enough that I'll cancel my cardiologists appointment this month.

Hugs to all!

loves to skate
04-08-2014, 07:13 AM
Wow, that heart rate must be very scary. I hope your Docs can get to the bottom to this and also the low blood count. The two things could be related. Please take care of yourself and let us know what your Doctors find.
Sally

rohrer01
04-08-2014, 09:55 AM
Wow, that heart rate must be very scary. I hope your Docs can get to the bottom to this and also the low blood count. The two things could be related. Please take care of yourself and let us know what your Doctors find.
Sally

I hope so, too! I'm seeing my OB/GYN for the last time next week. She switched to fertility only. She's been my doctor for almost a decade and has been the BEST one I've ever had. It's all because I'm 45 and they can't really offer fertility treatments involving my own eggs at that age. Plus I'm not healthy enough anymore. The scary thing is this appointment will mean at least one last female surgery to remove a fibroid tumor that we've been leaving alone for fear it will weaken my uterus in case of a pregnancy. It started out pea sized and I think the last time we measured it, it was golf ball size. I want it out! She's the one to do it. She's removed three other tumors that weren't so deep, one under the endometrium. I'll have one last laser zapping of my endometriosis, too.

This concerns me because of my blood count, although there is very minimal blood loss during her surgeries. Maybe SHE'LL get the the bottom of why I can't gain weight and am losing blood count. If I can't eat, I can't gain weight. I get SO hungry and then get sick. If I eat too much it triggers the tachycardia. So I have to munch all day. I get in about one good meal a day, sometimes two good meals and sadly sometimes no good meals. I keep high calorie snacks and I cook high calorie when I can cook. I use BUTTER and LARD, oh me oh my! My hubby is as skinny as a rail, too. But he's always been that way. He can eat 10 hamburgers in a sitting. His metabolism is very fast! So I've had to learn to cook high calorie. I do use healthy oils as well. Canola is my favorite, but I also use Olive oil. You just can't use Olive oil for anything. If you use it in the wrong dish it will taste funky. LOL

Speaking of food. I think I'll grab a bite right now! I'm hungry!

Take care all and thank you Sally!

rohrer01
05-14-2014, 12:47 AM
Another update on me for those of you following along.

My last blood count wasn't 10.6, it was 10.9. So I feel I have to make that correction.
My DNA testing was approved by my insurance. I will be tested for CMT (Charcot-Marie Tooth) and two types of Myotonic Muscular Dystrophy.
I had my blood drawn on Monday. They said they needed at the minimum of 20cc's of blood. So the technician took an extra vial just in case.
Some will be sent to a lab in Rochester, MN and some will be sent to Atlanta, GA. So, I guess this is some pretty specialized testing!
I will update whatever I find out. I'm actually hoping that it will turn up something so I can finally put a name to my plagues.
Regardless of whether or not it turns out to be one of these things, there are like thousands of dystrophy type illnesses that aren't all mapped out, yet.
I'd rather know which one I'm dealing with. Of the bad things to have, these are the "better" ones to have if there is such a thing.

I'm done with two full weeks of heart monitoring. I don't have the results of that. I'm assuming someone will call me since no follow-up appointment was scheduled.

I wonder if I test positive for a type of MD if my scoliosis would still be classified as "idiopathic". I would think that it would no longer fit into that category because scoliosis is one symptom of MD. That would throw off the study that I participated in. But, since Axial Biotech doesn't exist anymore (so I've heard on here), who would I contact to remove my sample out of the batch? I guess it wouldn't matter. However, if they want to develop a truly accurate Scoliscore, you'd think they would want DNA like mine out of the mix if there is MD involvement.

Just my thoughts. I hope everyone is having a good week!

HUGS to all!

Pooka1
05-14-2014, 06:02 AM
Hey Rohrer,

It sounds like there is a good plan going forward to figure this out. Along with muscular dystrophic diseases, I read there were probably many, many connective tissue disorders and only a few are named.

As to moving you out of the idiopathic category, I suspect they would not. I asked our surgeon if my girls were diagnosed with Marfans would that take them out of the category and he said no because they still don't know why scoliosis occurs with Marfans. That's my understanding of his response.

And w.r.t. your participation in the Scoliscore proveout, that is just chance of progression which may be roughly similar for most types of idiopathic scoliosis due to biomechanics. Or not. It seems like more work is needed.

Good luck with the testing. You have gone through so much.

LindaRacine
05-14-2014, 09:29 PM
I hope you get a definitive diagnosis. Knowing what you have may not change your treatment options, but there's something satisfying about knowing what you're up against. I think it would be considered neuromuscular if you're diagnosed with any of the syndromes you mentioned.

And, I wouldn't worry about ScoliScore. They are still in business, or they were a few weeks ago when I called to see if they were still accepting tests. They have so many subjects that I'm guessing that one subject being incorrectly enrolled would have no affect on the results.

--Linda

jrnyc
05-14-2014, 10:35 PM
hey rohr
i hope the doctors can figure things out and give you definitive
answer....i agree with needing to know the why's of things...
as Linda said..helps to know what you are up against...
when i finally got a diagnosis of Lyme, after a year and a half
of being called a hypochondriac, it not only put a name on
all the symptoms, it also gave me satisfaction for the stupid
doctors who told me they couldn't figure out what was wrong
with me, THEREFORE i WASN'T SICK...hah...ignorant doctors
with big egos!

you have been thru an awful lot...i do not know what the doctors
could offer you in terms of tx....but i hope you can get a name,
a label, for what ails you....to at least get started on the right
treatment approach.

best wishes for getting some news that can help you.
jess...and Sparky

rohrer01
05-15-2014, 12:41 PM
Thank you all for your responses. I agree that if my idiopathic label gets removed that it won't make much difference. There are probably a handful of test subjects that get subsequent diagnoses later on. That's to be expected in any large randomized study.

As for the putting a name to what I have...THAT'S a big deal to me. They make me take these MMPI's that say I'm a hypochondriac because of the types of medical questions on the tests. It so happens that I do have problems with all of these organ systems, which was noted by the psychiatrist who was baffled that I actually had pathology! Duh! Yes, I want a name to it. It probably won't change anything. It's the knowing that matters. Although, my neurologist said that if I have MD, there are new treatments available. So that probably would change the course of my treatments from dealing with the symptoms to doing something to slow down the progression.

Honestly, it scared the "you know what" out of me the other day when I lost a lot of muscle use in my legs from minimal overexertion. My arms I expected because the bulk of the work I was doing was actually moderately difficult and mostly upper body. Everyone thought I was in great pain because I couldn't pick my feet up and kind of had to use my hips to swing my legs in front of me in order to walk. It brought back instant memories of how my dad walked with his walker. I felt like I could have used a walker that evening. I was happy that I was in no pain, though. I just told my husband that this is what "we" have to look forward to. So if I get diagnosed with MMD, then maybe there will be some new medication that will slow the progression. Until then, I'm trying to keep my muscles as strong as I can. It's really sad to realize that I can actually feel the weakness setting in at this point. The biggest thing that scares me is drowning in my own fluids like my dad did. I watched him struggle to breathe for years. When he would cough, it took every ounce of strength he had. Every episode sounded like the end. His ribs were partially paralyzed and his abdomen was flaccid. It's already hard for me to breathe at times because of the pain of the scoliosis on my ribcage and on my back when I take a deep breath.

So, thank you again. I hope to hear definitive news. But I'm not holding my breath on it. Uncertainty is the story of my life. I cherish each and every one of you. You guys are my biggest support and the only ones who truly understand how difficult this is. Yet we all keep persevering!

HUGS!

rohrer01
05-21-2014, 09:56 PM
Updating again.

I have a new development that I don't know if it's related to my spine or muscle disease. Sometimes I can barely walk. It started with the episode while trimming my shrubs. Then the other day I got out of bed and had the same trouble. It lasted for about two days. Then I had a day where I could walk normally. Today, I got up and went to the Cardio Center to exercise and could walk normally all morning. When I got off the treadmill, I could no longer walk normally. This lasted the rest of thel morning. I came home and took a nap and when I got up I could walk normally but felt the weakness. It's really strange because sometimes my lower back hurts the night before, but not always. Usually when I'm unable to walk normally my lower back doesn't hurt hardly at all. It looks like I'm in tremendous pain, but I'm not. I feel like I need a walker when it's hard to walk like that. My PM&R doctor thought it was time for another lumbar MRI. I think I'll take him up on that. I'm also still waiting for my DNA tests to come back to find out if I have classic MMD. If it's negative, that doesn't rule out a degenerative neuromuscular disease. It may just mean that I don't have one that's been mapped in the genome. But, IF my MRI comes back with no nerve impingement, I can't think of any other cause of such leg weakness. Any ideas or advice?

Some other non-related news:
I had a biopsy on my lip yesterday. I can't believe how HORRIBLY this hurts! It doesn't make any sense. I have four stitches in my lip and it hurts clear into my jaw into my teeth and the right side of my tongue. It hurts all the way to my ear! It just makes no anatomical sense to me and I'm in excruciating pain from this. I hope it subsides soon.

The biopsy was done because, like other sun worshippers (figuratively), I fried myself as a teenager and young adult while living in the hottest city in the nation. There were times it got over 130oF. To cool down, we would go swimming in the river or lakes and lay out and literally fry ourselves. I've had a lot of blistery sunburns and am very fair skinned. My bottom lip has been peeling for the last five years or so. I saw a dermatologist last year who tried a steroid ointment and said to have a biopsy if it wasn't better in three months. Well, things happen and time goes by. I finally had the biopsy and will know in about a week. The doctor said it didn't look like skin cancer to him, but I had a discolored area on my chappy lip that wasn't a scab. So that's what he took out. OUCH!!!

I will also be having another "female" surgery next month. I have fibroids and endometriosis. The problem is pain management. I told my doctor that I "feel" like I'm at the limit of oxycodone and any more will make me sick. So we'll have to play it by ear. I have other issues, too, that will make this surgery difficult. Part of the surgery will be laparoscopic and the other part will be hysteroscopic. Laparoscopic surgeries are very hard on me because they cause upper back pain due to the excess CO2 that gets trapped under the diaphragm. I have some pretty horrible upper back pain as it is. So pain control is going to be a huge issue for a few days. I may just have to suffer it out.

So I'm scheduled for June 13th. If you all don't hear from me for awhile, you know why. I'm not looking forward to this and am a little more unnerved than I have been in the past. There's a tumor in a bad spot that has me pretty upset. I'm NOT going to have a hysterectomy. I'll go through these surgeries every couple of years if I have to. My doctor and a few family members seem to be the only ones that understand why I don't want a hysterectomy. I'm glad the doc understands and isn't pushing me to have one!

Anyway, thanks for "listening". LOL

HUGS!

rohrer01
09-03-2014, 01:56 AM
If this thread isn't helpful to anyone else, at least it's helpful to me. Here I sit having dialogue with myself. But it puts things into perspective for me and provides a timeline. It's open to the public so anyone can interject anything they'd like. That's why I'm doing it this way.

It's funny that the thread is labelled "I have some imaging CDs". I was so excited to be able to finally post my x-rays!!! I could follow things along from a progressive point of view. Yet, as everyone knows, scoliosis isn't my only problem and may in fact be a result of "whatever" is wrong with me. How ironic!

I've deteriorated to the point where my trouble walking, as I mentioned in the previous reply, is a daily occurrence. I walk clumsily all of the time now. I don't ever have "good" days where I can walk normally. For this reason, my doctor filled out the necessary paperwork for the DMV (department of motor vehicles) so that I can have a handicapped card to hang from my windshield. I have mixed feelings about it. BUT, when I see perfectly able bodied people using a spouses card so they can nab up the close parking while they run literally into the store while I'm at the end of the parking lot struggling to swing one foot in front of the other, I feel justified. It's fair from that perspective. My doctor gave me no resistance what-so-ever, which I'm thankful for. But, as I sit and feel a little sorry for myself because I'm "only" 45, I think of some of these poor kids that were born with birth defects greater than mine and have had to be wheeled around their whole lives. I feel pretty fortunate when I look at it from that perspective and wish I could take the hurt away from those kids. I at least led a pretty normal childhood.

But there are other things happening to me. As the cervical dystonia progresses, the Botox injections become increasingly painful and cause a tremendous amount of nerve pain in my arms and back. But after an hour or so after the injections I feel better. The doctor missed a crucial area last month. When that happens, I'm left with a fair amount of neck pain.

Another update is that Roche Laboratories quit making Klonopin for the USA. I don't know if they are distributing still in Germany or not. This created quite a dilemma for me since the generics don't consistently work for me. There is one laboratory that I requested and my pharmacy actually does most of their business with this laboratory. So I was hopeful that I wouldn't need much of an increase. Come to find out when I looked at the pills, I could tell right away that they were different from the last time I'd had them from this company. Sure enough they didn't work as well. Long story short, I ended up having to have my dose doubled and then I can still take more if I need it. At least it works. I have to chew the pills to get them to work for me. It could be worse, at least I have something that works.

I've had some other things develop that I don't know if I mentioned or not. I'm not able to walk on my heels or toes, not surprising. I also have some very minor facial paralysis on the right side of my face just below my lip. On the left side, if I poke my jaw muscle, it spasms and stays indented for a little bit. Nothing major there.

The newest development that is most upsetting is that I have difficulty voiding. I've sat on the toilet for up to four hours with a full bladder trying to pee! I've had to have a specialized MRI for that and am seeing a specialist who feels that it's part of the whole picture. They are trying me on a medication to see if that works. I also have to have some specialized testing done. It's my understanding that if the medication doesn't work OR the testing shows my muscles spasming (that's what happens and it can cause some excruciating pain!) this doctor will want to put an implant into my sacrum and connect them to specific sacral nerves. It acts as a pacemaker for the bladder by stimulating those nerves. I'd never heard of such a thing! But he said I was the "perfect" candidate for such a device. So I will let you all know how that goes if I end up needing it.

So my arms are really weak now, too. It's all I can do to open a can with my "easy" can opener that I bought a couple of years back. I'm also falling more. I took two pretty hard spills last week. One of them either knocked me out or I went unconscious before I fell. The other one was a balance thing. My balance is getting bad. Grrr.

So, when the snow flies in a couple of months, I will also be using a walker... at least outside. I feel pretty scared inside after those falls. I still hurt from them. I'm terrified that I will fall again. I can't blame the new medication, either. I fell the first time BEFORE I even saw my new doctor.

So that is my very wordy update...
If it doesn't help anyone here. It helps me to keep track of when things happen. Thanks for reading.
(((HUGS))) to everyone!

Pooka1
09-03-2014, 05:38 AM
Hey Rohrer,

I am so sorry to hear of the issues you wrote about. But it sounds like you are coping very well and that you are getting appropriate treatment.

Did your father have thee symptoms?

Even if people don't post, I will bet they are reading and hoping to have something helpful to say.

Hand in there.

JenniferG
09-03-2014, 06:02 PM
I am reading, and so sorry you're having such a difficult time. Keep us up to date with your progress and I hope you have some good news soon.

Susie*Bee
09-03-2014, 06:55 PM
I am also reading and appreciate that you are keeping us updated. I am sorry for all that you are going through and want you to know that so many of us care very much about your problems and are thinking of you and/or praying for you and glad to count you as a scoli sister and one who has always been an encourager and a person of strength. It's a brilliant idea to keep your timeline on here so you can revisit your journey as needed. Always remember that we care. Hugs, Susie

rohrer01
09-05-2014, 05:21 PM
Thank you guys so much. I really means a lot to me!
I ended up having to have a CT scan from the second fall last Saturday night. My head just keeps hurting and the pain isn't getting any better, although the bruising pain is. The doctor said I definitely had a concussion. Things are still a little fuzzy. I misspell words or mix the letters around or can't think of what I want to say. He said go home and rest! So that's what I've been doing today, but not all week. So that's probably why the pain is staying. He was afraid of a brain bleed or a CSF leak, which were both ruled out, thankfully!!!

Well I do have a diagnosis. I'm going to make a separate post for it so more people will see it. My last DNA came back with mutations for Charcot Marie-Tooth. Honestly, I thought that would be the LAST thing it would be. But, that's what it turned out. It's mostly a peripheral nerve disease that affects mostly the outer limbs. This is what my dad died from. There are treatments but no cure and most people live a normal life span. But a "normal" life span means nothing to me if I consider that my dad died at age 79, a normal life span. He didn't have a normal quality of life. I go in Tuesday to find out more from the genetic counselor. I'm glad the hunt is finally over! I feel very grateful for my team of doctors that didn't give up on me even though on psychologist said I had "hypochondriasis". Now we all know what that means. They didn't listen to him. Neuro exams don't lie.

How this disease is kind of insidious and I've had symptoms since I was a baby, now that we know. The nerve endings die off. Well each muscle fiber has a nerve ending on it that signals and tells the muscle to contract or relax. When the nerve dies, there is no signal to the muscle and the muscle atrophies, leaving permanent and progressive weakness. Oddly, scoliosis is a symptom of this illness. So I don't know if I would be classified as idiopathic anymore now that we know that the scoliosis is secondary to CMT. It goes to show how integrated our bodies really are. Chronic fatigue and severe pain are also symptoms. In some cases the myelin sheath of the axon is affected or absent which makes, at least that form, a little similar to MS. So it's somewhere in a class of it's own. MS can go into remission. CMT does not. It is progressive. It is treated with a strict regiment of PT, OT, mechanical aids and sometimes surgeries. The odd thing is, running and walking are the worst exercises a person can do for this disease. They always say walk, walk, walk. Cycling and swimming are among the best exercises.

Anyway, I couldn't keep my mouth shut until Tuesday when I find out more!

(((HUGS))) to you all. I care about you all, too!

JenniferG
09-05-2014, 05:44 PM
So you have your diagnosis at last. It must, in some strange way, be gratifying. I don't know much about it, but you have your father's example. Has treatment advanced at all, since your father's death? I hope so, that you have a better future to look forward to than the one he had. Does your timeline with the disease coincide with your father's? For example, did certain symptoms appear at the same age as your Dad's? I guess there must also be degrees of severity with this disease?

rohrer01
09-05-2014, 05:57 PM
Jennifer,
My dad died undiagnosed and received NO treatment what-so-ever. His doctors were completely incompetent. I was baffled and studying genetics in college at the time. So I had my geneticist friend on hand to ask questions to about his symptoms. We both agreed that it sounded like some sort of muscular dystrophy. I couldn't help him. I lived so far away. They blamed his gradual weakness and paralysis on mini strokes. I'm sorry, but people fully recover from those. He NEVER had a full-blown stroke, ever. They didn't care because he was 70 by the time he was as bad as I am. I am 45 and my sister is 46. She has all the symptoms, too, so is going to have her DNA tested as well. I am the squeaking wheel in the family and I wasn't going to be quiet about it. Yes, I got tired of going through tests, some painful. But I was going to take it to the very end, which is a research study that is going on in the East Coast. They are studying rare genetic diseases and can test 20,000 genes or segments of DNA at a time. When I had my DNA testing done, they tested for THREE things, not 20,000.

And YES, I feel a sense of relief. It's a little dismaying, but I know what it is now. No one would fully know how to treat me not knowing what was wrong. So I am happy about it, as is my sister. Now our kids all need to get tested. It appears autosomal dominant from my father which means that each of my kids has a 50/50 chance of having it. Two of my children have/had scoliosis and the other is stiff. My grandson is developing a scoliosis that isn't a true scoliosis, yet. He is also stiff and had sleep apnea as a baby, same as me. So I'm a little worried about all of them. But I did my part and let them all know. My sister let her kids know, too, since she likely has it as well.

I can't answer if treatments have improved since my father passed away. He passed away three years ago. So I don't think they would have improved that much. But at least I will get treatment!

Thank you for caring and asking.
((((HUGS))))

LindaRacine
09-05-2014, 09:10 PM
Hi Rohrer...

Glad you have a definitive diagnosis, but sorry it's CMT. Your scoliosis would now be considered neuromuscular.

Linda

rohrer01
09-05-2014, 09:46 PM
Hi Rohrer...

Glad you have a definitive diagnosis, but sorry it's CMT. Your scoliosis would now be considered neuromuscular.

Linda

Thanks, Linda. I'll have to tell my scoli doc if/when I eventually go back to see him. I don't know if it will affect whether or not I should have surgery. I read on the NIH page that they sometimes to preventative joint surgeries and preventative bracine BEFORE symptoms appear to spare the body part from degenerating as fast. My left rib is so high up in my neck and the doctors are always having to work around it. They are always scared because they are afraid of collapsing my lung. My physiatrist has brought up scoli surgery a couple of times... So I don't know what this means, maybe nothing?

Do you get any CMT scoli people in your clinic?

LindaRacine
09-05-2014, 11:50 PM
I think I've only seen the diagnosis a handful of times. I'm really curious whether it's that patients aren't getting diagnosed or if those who have CMT don't look to have their scoliosis treated. It's also possible that the only CMT patients who seek treatment of their scoliosis are kids. We do see kids, but only at a relatively low ratio. Another thought is that I typically only see diagnoses on our surgical patients, so it's possible we're seeing patients, but they're not encouraged to have surgery.

I'm off to the SRS meeting next week, but when I get back, I'll talk to some of my surgeons about you. The one thing I'd be concerned about is what impact a big surgery might have on your other symptoms. I have to say that it's really common that people with significant co-morbidities end up with at least a short-term increase in their symptoms.

--Linda

JenniferG
09-06-2014, 04:38 AM
So sad about your father, not even getting a diagnosis therefore not receiving any treatment. Do you know what the treatment is, and how effective it is? I have everything crossed that you're finally going to get some relief from your symptoms soon. Best of luck and keep us informed.

rohrer01
09-06-2014, 11:57 AM
I think I've only seen the diagnosis a handful of times. I'm really curious whether it's that patients aren't getting diagnosed or if those who have CMT don't look to have their scoliosis treated. It's also possible that the only CMT patients who seek treatment of their scoliosis are kids. We do see kids, but only at a relatively low ratio. Another thought is that I typically only see diagnoses on our surgical patients, so it's possible we're seeing patients, but they're not encouraged to have surgery.

I'm off to the SRS meeting next week, but when I get back, I'll talk to some of my surgeons about you. The one thing I'd be concerned about is what impact a big surgery might have on your other symptoms. I have to say that it's really common that people with significant co-morbidities end up with at least a short-term increase in their symptoms.

--Linda

I was thinking the same exact things. Thanks ahead of time for asking them about me. I know a huge surgery would take a lot out of me. But if the nerves could be kept from dying I would recover. On the other hand, the twisting of my neck has become so bad that the muscles feel literally like rocks and have cut off normal blood flow to my left arm at times. This causes my hand to turn red and swell and the nerve pain is excruciating. I have two doctors that do the trigger point injections that release these muscles. So far if one is busy the other can see me. The physiatrist talked about unkinking my neck. But he's for sure not big on surgery, either. But the dystonia is putting so much strain on the nerves, blood vessels and muscles there because of the altered anatomy. It's near the brachial plexus. If I weren't able to get relief from this, I don't know if I would eventually lose my arm because of the blood flow issue.

Surprisingly, my hands are strong (my sister has more hand problems). I just can't move my fingers fast enough to be a really good musician. I also have constant twitching in my right ring finger if there is any tension in it at all. My hands are a bit shaky, but not bad. My sister can't button her shirts. I think it has to be coordination. She adopted 4 little kids over the last few years and two of them were newborns. They are all from the same family. But the point is, she has two and three year olds right now and the oldest one is only 7 (she started with a 1 and 4 year old and the woman kept having babies). Her pregnant daughter (the one with scoliosis) has four little kids. The oldest is 10 and the youngest just turned one. My sister watches all eight kids! So her hands can't be super weak. Otherwise, she wouldn't be able to pick up the babies. So I think, so far at least, it is the fine motor coordination like me only worse.

My coordination has always been poor. I was always the last chosen for the team (any sport), literally. I've never been really strong, although I have been in very good shape. I used to ride bike a LOT as a teenager and later got into bodybuilding for a short time. I never bulked out but was able to get good definition and tone. But there seems to be a critical tipping point where you go from being "normal" with what you think are individual limitations (everyone is not good at everything), to realizing that something is really wrong. It's at that point that you look back on your life and see symptoms that you ignored or thought you "outgrew". My legs feel like they did when I was 3 or 4 years old (surprisingly I remember) when I would get whacked on the butt by my grandma for dragging my feet, or chastised by my parents for walking pigeon toed. It's all back, only worse. I can FEEL the weakness. Yesterday I did a little cleaning and cooked dinner. My thighs were literally quivering and exhausted. I've had complete muscle exhaustion before. By complete, I mean not able to move the muscles AT ALL. I was born with slightly clubbed feet. It was bad enough that the pediatrician wanted my mom to consent to putting my legs in a brace that would hold my feet outward. My mom said, "No!" My feet are now shaped normally, unlike many other CMT sufferers. I also lacked the "instinct" to breath through my mouth if my nose was stuffy. I almost died at about 4 months old because I had a cold. My mom said I was as blue as a pair of new denim jeans. She did mouth to mouth resuscitation and rushed me to the hospital where they told her nothing was wrong with me except a slight ear infection and a little cold. They sent her home with me not breathing unless I was kept crying! My poor mom!

Now I'm prone to falling. I fell hard twice within 6 days. Like I said before, the second one knocked me out and gave me a concussion. I'm scared to move around my house! What if I fall when no one is home?

The reason my doctors thought we had MMD is because if the muscles are held with strain for a longish time, they don't release. For example: My sister and I thought it was "normal" that we could not open our hands right away after playing on the monkey bars. Those kinds of symptoms threw my doctors for a loop. But HER doctors didn't even look in that direction. They told her she had Parkinson's (99% sure), which devastated her! Then they changed their minds and said they were sure it was MS. But she had no definable lesions on her scan. Then they decided on some kind of right sided neuropathy of unknown origin. Why they said right sided is beyond me. I haven't seen that her right side is obviously different from her left.

MY left leg is weaker, but an MRI I had a couple of weeks ago shows that I have a ruptured L5/S1 where before it was just bulging.

My sister gave up. She was given a false diagnosis so many times which caused her emotional devastation too many times. So she said she was done trying to find a diagnosis. So I was the only one left to try to figure this thing out. My dad was dead and my sister had given up! I told her I would keep going for "us" and our dad. I would NOT give up! And now I'm glad I didn't. I'm glad that I live in an area where I have access to some of the best health care in the nation. My sister and father didn't have that good fortune. But I really was afraid of coming to a dead end, too. I honestly thought that would happen. I am so HAPPY I can't explain that we have answers. Without answers we would have had to go through this without help like my dad, and that was awful. He died a horrible death drowning in his own fluids. So whatever kind of CMT this is, it's one that doesn't stay only in the peripheral nerves of the arms and legs like most CMTs. My dad's chest was paralyzed and his belly was flaccid. By the end, even his lower jaw was partially paralyzed and all the joints in his arms were completely frozen.

The best health care in this country is at both coasts and in the upper midwest. If you live anywhere else it's tough. They live/d in AZ where healthcare is TERRIBLE. And if you're unfortunate enough to be stuck with an HMO it's even worse!

By the way, Linda, I hope you came through the earthquake without any injuries or property damage. I know when I lived in AZ I could feel those CA shakers. They'd knock stuff off of MY walls!

Take care and THANK YOU!

rohrer01
09-06-2014, 11:59 AM
Linda,

Just one more thing. It's my understanding that people with CMT usually have mild scoliosis. That may be why you don't see a whole lot more of us.

rohrer01
09-18-2014, 01:04 AM
To my good scoli friends, I have an UPDATE: I saw the neurologist yesterday. He's completely baffled and sending me on to Madison for more extensive genetic testing. Meanwhile, my good friend that happens to be a Ph.D. geneticist is coming to have lunch with me and go over some new information she has found and shoot some ideas around. I asked my neurologist if he wanted her info and ideas and he gave an overwhelmingly positive response! Since my friend teaches AND does research, she HAS to keep up on all the latest in genetic research. She is a highly intelligent and wonderful person, especially to take time out to come to my town and help me. She was my mentor when I did my undergraduate research, but that was 11 years ago! Many have come and gone and we have seemed to remain in touch. She's a very special lady!

Meanwhile, enough about my friend. My neurologist and my geneticist are going to see if I qualify for the rare genetic disorders study being done by the NIH. At first they were against the idea. Now THEY are the ones bringing it up. If we can't figure this out for me, then maybe for my kids and grandkids (a nurse told me that). They know now that it's a race against the clock. They see it clearly as new symptoms crop up faster than I can report them.

I also saw the urologist today. So far, so good in not needing a bladder pacemaker. He had to change my meds due to my low blood pressure. I had a TON of testing done today. I guess it was okay. I only failed one part, not being able to pee a second time after my bladder was intentionally overfilled. Other than that, I think I did okay. He didn't say otherwise. So, hopefully this new med will work and my blood pressure will come back up. He was going to UP the dose of the one that I was on because it was working, but not as great as it could have been until I told him how low my BP has been running (80's/40's or 50's). So here I am, awake in the middle of the night because I had to PEE and only a trickle. It has get better than this. I do NOT want a bladder pacemaker!!!

I'm excited because I am using one of my spare bedrooms as my own in-home gym! I had to give my treadmill away because obviously I can't use it properly if I can't walk properly. Anyway, if what I have is related to CMT, walking is contraindicated. So I bought a three-in-one stationary bike, recumbent bike, and elliptical machine. I went back to Sears today to look at theirs and mine is BETTER. The foot rests for the recumbent bike part are bigger and wider and the arm poles adjust in a way that doesn't interfere with the comfort of the grip. I have also found a fourth way to use it! I can use it like the sitting stair machines that they used at the Heart Center. I can sit, use the upper foot pedal AND reach the arms all at the same time. I set it on low and warm up just as I used to do. I also bought a weight bench. I could care less about the bench press feature. I bought it because it has leg lift features where I can do BOTH front and back leg lifts. I also have my big ball, stretchy bands 1 - 3 lb hand weights and ankle or arm weights that are 2-1/2lb and 5lb. The great thing about these little things is that they have six removable sandbags each so you don't have to start at 2-1/2lb and can work your way up gradually. I also have my small ball used for various PT exercises. So I'm set with whatever I need if they give me a specific PT routine. Otherwise I've been trying to mimic what I was doing, adding the elliptical instead of the treadmill. I am SO out of shape! My heart rate shoots right up again...which leads to the other update.

I may have mentioned this already, so bear with me if I have. My heart rate is slowly creeping back up there. I have to have nerve conduction studies on my heart. :-( Not looking forward to that AT ALL. I misread my letter from my cardiologist.

Another thing happened to me that is concerning. We had to take my grandson to the ER in the middle of the night the other night (he has pneumonia, poor baby). On our way there I was talking to my daughter as if she were my SISTER! I could NOT understand for the life of me why she didn't know these people from MY past that I was talking about. I was talking about this girl who was my age and her brother, whom my SISTER had a crush on. When my daughter was trying to make sense of what I was talking about, I told her that she had the biggest crush on this guy. Then she asked me if he was older or younger than my high-school girlfriend. I said he was OLDER and that he was in HER grade! Seriously??? At that point I realized that I was out of my mind! I've called my daughter by my sister's name a few times, as has my sister with HER daughter. They remind us of each other in some weird way. But, I'm definitely reporting this one to my doctor. It could be part of the concussion. I thought I would be all well by now. I feel all well, mostly. I know I don't have a brain tumor or anything because they did a CT scan when my headache didn't go away. The doctor said my brain looked normal. I don't have dementia on either side of my family. I'm having difficulty typing and spelling words, too. A LOT of trouble. I type letters out of order and make way more typos than I ever have. I'm constantly having to hit the back button every couple of words.

That's some scary stuff right there.

Anyway, you all have a nice day.

rohrer01
09-19-2014, 09:42 AM
Grrrr....

My family wants me to call them EVERY time I have a doctor's appointment related to my neuromuscular degenerative disease. So the last time I called my mom I told her exactly what the genetic counselor said in wanting to test my mom for two mutations. She INSISTED that I let her know WHEN this would happen since her physical is coming up and she wanted to give the blood samples at the same time. I told her I didn't know and it probably wouldn't coincide and not to put her physical off. She went on and on how she doesn't like to be stuck with needles. (she give herself shots monthly) So I told her that maybe they could just have her do the cheek swab when the time comes. She got angry with me and cut our conversation short. Later called my husband and ranted about me and included my sister in the rant against me (not the affected sister). I knew she was ranting and my sister didn't say the things she was accused of saying.

Meanwhile, I get referred to the neurologist who is baffled by the results of my test and want to refer me on to a hospital that can do more extensive DNA testing in-house, rather than sending them out. So no mention was made of those two mutations. So, again, I call my mom and let her know. The same rant continues about coinciding the tests. I told her I wasn't sure if they were going to take that route now that I had been referred on.

So I want to talk to my sister about what happened with "the phone call". I end up getting yelled at because I can't give her a diagnosis of what I have. She couldn't understand that there are diseases out there that are unique, rare and haven't been named. The insinuation that's being made is that I'm comparing myself to my deceased father in the sense that I'm looking for things to happen to me that happened to him, foresight. I tried to explain that I made no connection with my father until muscle weakness and paralysis began AND in talking to my "affected" sister noticed that our symptoms are similar to that of our deceased father's. All along, I assumed he died of undiagnosed ALS, so made no connection what-so-ever. I tried to explain that all of this is hindsight.

So here I sit, feeling once again like I'm being called a hypochondriac looking for sympathy. I told her so. She denied it, but INSISTED that if I have CMT that the life expectancy is normal, which it is in most cases. IF that's what my dad had, he did live a normal life expectancy and died at 79. The last 10 years were pure HELL-O for him, though, AND his walking troubles didn't START until he was 70. I'm 45. I tried to explain that the NIH website says that people with CMT "usually" have a normal life expectancy. That "usually" means NOT ALL. Nope, she wouldn't listen. I said I may not even HAVE CMT but may have a variant of it related to it but different.

My neurologist was VERY alarmed at what he saw in me this month vs when I saw him in January or February. The progression is rapid. The nurse even told me that if they don't find a solution for me, that at least I might be able to help my kids.

I ended my conversation with, "I don't want to be yelled at because I don't have the answers. I just want to be loved and enjoy my family with however much time I have and that none of us know how much time we have." I also said that I'm NOT updating ANY more of my appointments.

It's just causing my family to be upset because they can't understand the science part of things. It's frustrating and hurtful to feel like a child crying in pain, being doped up with aspirin, and being called a hypochondriac all over again. Having insinuations made that I'm "looking" for trouble by having DNA testing done. I probably shouldn't vent here, or at least change my username so they don't know who I am. I now know WHY my other sister (the affected one) QUIT telling them ANYTHING. I'm the only one she talks to about it. She's tired of the testing and the misdiagnoses so is just living her life. I was told I should do the same. I said I would if I could walk normally! But my affected sister knows I'm doing this for "us", meaning her, myself, our dad, and our kids/grandkids.

My rant is over. This is why I joined the forum to begin with...so I wouldn't "talk" about it so much. But, for me, it's scary to go through what I'm going through and have absolutely zero family support. Even my hubby hates doctors and every bad thing that happens to a person (a doctor finds it) makes it the doctor's fault. My kids are completely apathetic. My daughter admitted to me that all these years that I've been in pain (symptoms of nerve degeneration) that she thought I was faking to get attention...until she saw me walk after not seeing me for months. Every time I was feeling really horrible with pain, she would be sicker or in more pain so that I would be forced to watch her son. EVERY time! Now I know why.

I feel all alone in this...totally alone.

Just one more thing. My mom says that she would trade places with me in a heartbeat. If she knew all that I've been through, even the urology testing this week was a nightmare, she wouldn't say that. If she's making such a big deal out of a needle stick in the arm, how could she even imagine the rest of the testing, let alone day to day living! She told my husband that I'm accusing HER for my illness. That's absurd! From a scientific point of view you can't blame anyone. It's genetics! From a moral point of view, how could I blame her? She gave me life! We don't get to choose what our genes are, but I'm still glad I was born!

jrnyc
09-19-2014, 01:39 PM
hey rohr
am going to write a private e mail to you...

jess...and Sparky

susancook
09-19-2014, 03:41 PM
Rohr, you are never alone, we are here for you. You are not asking for trouble having genetic testing done.

Do whatever you want with the following advice. Your mom has her own guilt problems to sort out, she needs to deal mentally with her problems. I might suggest that when your conversations with your mom degrade to her calling you names, have a script written down that says something like, "mom, I love you but this conversation is very stressful for me. I am going to say goodbye now. If you cannot be supportive of me, please do not put me down. Comments like......., are not helpful".

Hugs to you, Susan

Susie*Bee
09-19-2014, 03:42 PM
Awww, Rohrer. I am so sorry for all the problems, especially with your family. Just when you need understanding the most, you get the opposite. Life isn't fair at all sometimes. We are here for you and hopefully when (if) they are able to dx your disease(s) some resolution can take place. In the meantime, know that you have a special place in many of our hearts, and I know how hard and strong you are battling through this. I am praying for you and sending my best and cyber hugs.

rohrer01
09-20-2014, 08:17 PM
Thank you...all of you, REALLY!
I was having a moment of self pity, but still feeling the sting.
I told someone that I got my own in-home gym and got the snarky remark, "Well, are you using it?" I just got it! AND I told her that I had been working out in the gym for 2 hours, three times a week for the year and a half, at least (the implication was that I did NOTHING except lay around). I can't get comments like that out of my head! But that was from the rant above, so I should just let it go. I hate knowing how people are so judgemental over something I have NO control over. If I was doing nothing, I would get blamed for that, too! It's a lose, lose.

Your kind words and advice are really appreciated. Susan, that IS good advice that I will take!

I have a new symptom! Yeah! Just what I wanted. I already had trouble with eyelid paralysis, almost ALWAYS one eyelid at a time. Once I manually opened the eye, the muscle would work just fine. It happened when I was tired or waking up. Now, upon waking I am unable to open my eyes at all unless it's manually. Then I can't see! Everything is blurry for a good few minutes, like the muscles in my iris are being affected and are paralyzed, too. So my pupils are fixed for those several minutes. I can't look at the very large digital clock in the middle of the night, AT ALL. I have to wait until my eyes start working. It's important because I have a middle of the night medicine that I can take as needed, which it is. I can't see to go to the bathroom. Fortunately I know my way around. I don't know if my dad had these symptoms. He was BLIND from macular degeneration.

So, just to take note of this in my "journal" this started about a week and a half ago. I always wait a little while just to see if it's something incidental that goes away. I'd already talked to my eye doctor about the paralysis of one lid at a time and he told me it sounded neurologic and to talk to my neurologist.

Now my eye doctor DIED on Thursday! I'm SO SAD. I saw him, I think it was the end of July because my eyes were getting bad so fast. He said that was normal for my age and upped my bifocal 2X and my regular Rx 1X, which I haven't had filled waiting for my husband to go. So my husband had an appointment a little farther out than I would have preferred, but I wanted to wait to order glasses together and save on shipping. So he got a phone call the week before his appointment that the doctor was out sick that week. The next week we get a letter saying that he was retiring early (he looked fairly young...Maybe late 50's or 60, but didn't look that old). I assumed the worst and it was. I believe he had pancreatic cancer. BOOM! In a day he went from healthy to very, very sick. I don't think he lasted even a month from his diagnosis. It's all so very sad! :'-(

The bold is for me. It's just in case I need to refer back to when things started.
My mom's been calling me every day since a few days after the "incident". She's being super nice, but wanting to talk about "it". So I try to change the subject because I don't know any more about "it".

You guys are the best people to "talk" to about my symptoms. My hubby doesn't even know the new one. I haven't told even him and don't know that I will...

It would be nice if you all were tangible. But cyber friends that will listen without criticism are better than no friends. I know that at least 99% of you ARE who you say you are and experience the things you say you experience. It's helpful and thanks again! I do have LOTS of friends. Don't get me wrong. But really, who wants to hear a sob story every time they see you?! So when I see them and they ask how I'm doing I say, "I'm here and glad to be here!" wherever we are. That's a positive and truthful answer! Then we can talk about other things. :-)

(((HUGS))) to everyone!

rohrer01
04-04-2015, 03:28 AM
Again for those interested in following my story:

Many new symptoms. However, I found out that my sister has the same difficulty with her eyes! She even has it in the daytime. The other day I was talking to my dear daughter-in-law and she was shocked at how large my pupils were. Oh well.

Some of my new symptoms are rather embarrassing but I will share all that I can think of right now.

1. despite my cervical dystonia Botox injections I'm unable to turn my head to the left more than about 45o. That is scoli related. I'm slated to see a neurosurgeon at my hospital who has an interest in scoliosis. A different doctor, my physiatrist was nice enough to order the x-rays because my neurologist dropped me for the reason he couldn't figure out what was wrong with me. He's not even willing to follow my decline as a learning experience should someone else like me come in. The problem with the x-ray is it was ordered for only a coronal view so I'm going to have to straighten that up (ha ha a pun!) and get the neurosurgeon to order a sagittal x-ray as well. If he doesn't, it will show me how interested he really is. No worries, there's no one qualified to do any surgery on me here. My scoli doc admitted to only seeing about 1 patient with a high curve every couple of years. He wouldn't answer me as to how many lefties he's seen. I'd wager I'm the only one. He's NOT touching me if I ever have to have scoli surgery to relieve the symptoms in my neck and arm.

2. I now have pretty significant hand weakness. I can barely get through opening a can with my very easy to use manual can opener. I don't want to switch to an electric until I absolutely have to.

3. Balance is very bad. I take minor spills every day that I can roll with. I can no longer walk normally, but this has nothing to do with balance as I fall even when I'm crouching down. I don't remember if I posted about my major fall at the end of September. I got up in the night because I couldn't sleep and had a bit of a head rush which was not that uncommon at the time. I leaned forward on the doorjamb to let it pass. The next thing I know I hear a loud noise and my husband was standing over me. I had been out cold for I don't know how long. I wasn't making sense and kept telling him to call 911 and then not to. I was in excruciating pain from head to toe but especially my neck, left arm and legs were the worst. I was wedged under the bed somehow. I took a nasty blow on the metal bed rail to the left side of my head and managed to get stuck under the bed where my head does NOT fit. So the bed was on my head. I lay there for an hour and a half trying to use my EMT skills to assess myself (stupid), not thinking clearly, clearly! I knew I needed a hard collar and back board. I scooted myself as straight out as I could and don't remember when or how I got up, still. I went to the doctor finally on Thursday and this happened on a Saturday/Sunday night. The head pain was horrible and hurt opposite where I hit. The doctor tried to have me follow his fingers and I couldn't. I was in CT five minutes later! My brain looked good he said but I suffered a doozy of a concussion. So I'm afraid of falling! I've taken to riding the scooter at shopping centers that have them because I can't walk that far AND I'm afraid of falling. This is partly why I stopped posting. I've had trouble typing. I think I spell a simple word and it's a jumble of letters. I had amnesia of the actual incident. I still don't remember falling. I am still having trouble with word recall and remembering names of people I know. I have no idea if I cracked a vertebra in my neck since no one checked it out despite me telling my PCP the next week! I'm healed now but still recovering my typing skills and word recall. So sorry I've been gone for so long. My spelling is terrible now, too. It's getting better and thanks to word processors that catch the misspellings! So sorry if I posted about this already. It will go to show how I'm doing now if I did.

3. I can't whistle! I was listening to a song I liked the other day and found that I can no longer whistle! That means my mouth muscles are being affected.

Now for something I'm proud of! I've weaned myself nearly off of oxycodone with no substitute! I accept the fact that I am in constant pain and will need it when my pain can't be controlled any other way. I am down to 10mg a day from 60mg and 80mg when doctor approved. So happy day!

Well, I can't say that there is no substitute at all. My doctor put me on a whopping dose of gabapentin. As it turns out, most of my pain was nerve related. I've had it upped twice and am having nerve pain in a really weird place right now. It's the muscle that goes on the back side of my right armpit. This IS a new one! My left leg a little.

My L5/S1 disc is now ruptured. I saw the MRI and the disc matrix was spilled all over the spinal canal (yes, I realize that the actual spinal cord ends at the bottom of the thoracic spine). I can't help to think that this stuff touching all of those nerves could be contributing to my leg pain. My doctor that gives injections in the lumbar said it was stable. Hmmm it went from bulging to rupture and is stable?

4. An embarrassing development. I, at times can't urinate because of muscle spasm so I have to cath myself. There are times that I can't even feel the urge to go. It feels like menstrual cramps at times I shouldn't have them. So I go in and cath and the "menstrual" pain goes away with a whole lot of pee!

5. I've been through a battery of tests and have reduced feeling in my rectum which is probably what led to a rectocele that protrudes posteriorly which is nearly impossible because the spine is right there. So it must go from side to side. So when I have to go, I have to go NOW. I'm debating on having the further testing that was recommended.

6. I had a barium swallow test because of my swallowing problems, food/water doesn't want to go down. There were a couple of areas of my esophagus that were in spasm and not letting the barium go down. The doctor, not technician, that performed the test made me drink water until it released. At the end he wanted me to swallow a barium pill. It sat there on a little ledge and wouldn't enter my stomach no matter how much water he had me drink! I take a TON of medication. I'm sure some makes it down and some doesn't. It's the ones that burn that are the problem! So, I was told to eat VERY slowly, which I already do. I was recommended to have another endoscopy. I had one two years ago. I don't know what different things they would be looking for this time. The doctor didn't see anything abnormal last time. I asked the PA-C what the treatment for the esophageal spasms was. She said Botox to the affected muscles under anesthesia. I have Botox in my neck. I know what it does. I think I'm going to pass on this one. If they get it wrong I won't be able to swallow at all! Nope, nope, nope!

7. I had my hair cut short because I was losing so much. I lost over half, which is really nothing as my hair was so thick. I decided I wanted long hair again and have been growing it out. I never wore it down until today and was surprised at how long it got! It came in THICK, just enough to give it too much volume because most of the hairs have little tiny but subtle kinks in them! I've always had stick straight hair. I have NO idea what happened. Maybe hormones?

That's all I can think of for now. We got our new porch/deck/ with stair and ramp access to our home built. It's awesome! I had them change the position of the door and widen the entrance inside. It looks great. Now to deal with the payments! Grrr...

8. Oh, I almost forgot about this one. I had my calf muscles completely freeze up. It didn't hurt, but it felt like my lower legs turned to wood. I could NOT walk without a LOT of support that way. I crawled my way up the stairs and managed to hang on to the banister where my craftmatic bed is. It's happened a couple of times. That's how my walking problem started. I hope it doesn't happen again.

That is my very LONG update.
I hope you all have a great day/night!
Rohrer01

LindaRacine
04-04-2015, 12:19 PM
Hi...

I can't say it's good to hear from you with so much getting worse. Glad to hear that you're getting off narcotics and that neurontin seems to be controlling some of your pain. I hope that find the right doctors who know how to treat more of your symptoms. My heart goes out to you.

--Linda

Pooka1
04-04-2015, 12:21 PM
rohrer thanks so much for checking in. I miss you. I am greatly saddened by the laundry list of medical issues you are dealing with. Please hang in there.

Sharon

rohrer01
04-05-2015, 12:18 AM
Thank you, Linda and Sharon.

I didn't just drop off the face of the earth as some may have thought. Reading is hard, so I don't like to do it. Now that I'm getting better at spelling and my jumbles are mostly gone, I can participate more.

What are your thoughts about getting a sagittal x-ray? They did measure my thoracic kyphosis at 7o last time. My heart is misshapen and displaced because of it. I found that out when I had my CT angiogram of the heart.

The valves are working properly despite the fact that they are misshapen, too. But I'm on two different heart meds plus potassium. I was hypokalemic before I was on the heart meds. I'm on a beta-blocker and a calcium channel-blocker and my heart rate is on the rise again, along with my BP which is normally low. It's where it was before I was on meds that bring it down! Eek, I hope I'm not getting high blood pressure and am just getting used to the meds that I've been on now for a couple of years. It could also be going off the meds and my pain level being higher. Surprisingly they aren't that much more than they were! Ed was totally right! I could never go cold turkey like he did, though.

Hugs to you both!
Rohrer01

LindaRacine
04-05-2015, 12:35 PM
Hi...

Initially, I was really surprised to hear that the physiatrist didn't order a sagittal view. Then, I started thinking about it and realized that the physiatrists we work with probably don't even look at xrays, as it doesn't tell them what they need to know. They work almost exclusively with MRIs. I'm not sure how important a sagittal view is in your case, but it would be nice to have the film to document the history.

--Linda

rohrer01
05-03-2015, 06:38 PM
Linda,

I wrote and asked the neurosurgeon if he would order the sagittal view. I haven't checked if he's responded, yet. I'll let everyone know how the appointment goes. It's on the 11th.

Thanks!

rohrer01
05-22-2015, 12:32 AM
My last set of x-rays done last two weeks ago showed that I am perfectly balanced in both the coronal and sagittal planes. The neurosurgeon said that any progression from here on out would be from age related spinal degeneration.

The bad perspective of this from my point of view is that I have no neck lordosis, no thoracic kyphosis, and very little lumbar lordosis. My problem with this is that all of the natural impact hits my spine sideways instead of the natural way it's supposed to be cushioned by the natural kyphosis/lordosis. This causes a great deal of pain. I totally agree with the doctor that surgery would not solve my pain issues. I know this because my DIL is fused in a similar fashion that I would be (I would have a little longer fusion by a vertebra or two) if I had surgery. She has very similar pain patterns as I do. She also has a nearly stick straight spine because her surgeon wasn't able to restore her thoracic kyphosis which caused the rest of her spine to lose its natural lordosis to compensate. The poor girl is so young!

My SI shots must have worked because I'm up out of bed doing things! The bad part about that is it's caused my pain level to shoot back up. It's worth it to be able to do stuff even though my narcotic use is back up. It's at least not back up as high as it was. I have some wicked sciatic pain that goes from my sacrum all the way down one leg or the other. Today/night it's my left leg.

I've also had foot/leg swelling for months. I mentioned it to my doctor that it was when I was up doing anything. He brushed it off as age related. But, what I didn't think to tell him was that it's when I'm NOT doing anything, too, until I was looking at my feet the other night after a day in bed. I realized that when I was bedridden from pain my legs and feet were swollen. I mentioned it to him again today. He said the only thing he could do was to add a diuretic to my diet of pills. I reminded him that I'm in stage 2 renal failure and we both decided it wasn't a good idea since diuretics are also hard on the kidneys. Now I'm thinking about TED hoses for my feet and legs. Any feedback on that...anyone?

I'm pretty sure you need a Rx for those if I remember correctly. I'll call the office or write in and ask about that tomorrow.

Any other feedback about my other issue would be welcomed as well. I'll post new pictures as soon as I go to the radiology department and get them. I also want to get the doctor's notes on my barium swallow and rectal test as well.

I hope you all have a great day/night!
Rohrer01

rohrer01
10-16-2015, 11:44 PM
It's me again. I finally went and got the radiologists notes and the CD's of my last x-ray and full spine MRI. My scoliosis actually progressed by 4o on top and 6o on the bottom AND I'm developing a lumbar curve. The lumbar isn't "scoliosis" yet at only 6o, but it was at zero. So yes, I'm progressing faster than one would expect for a curve under 500 BARELY, now. These guys at this hospital are super conservative on their measurements as well, the most conservative I've ever seen. Dr. Perra at TWSC would definitely measure me over 50o as he is less conservative.

As to the treatments to help my range of motions on my neck, who knows? Are they making it worse. My back is sinking in pretty far between my shoulder blades. They didn't measure that. I get Botox every 90 days and trigger point injections every two weeks. It's grueling but necessary.

My neurodegeneration has me falling as I'm sure I've already mentioned. However, my last two falls could have been life threatening, as if the concussion wasn't. I had a nice remission in my walking ability and took advantage to take a friend hiking. I can't walk downhill and we were on rough terrain. But with the aid of walking sticks (meant for downhill cross-country skiing training in warm weather) I did just fine even with my weird leg posturing. I was able to climb up to my favorite cave, which has a rope for security. Coming down, it was easier to do facing forward. My body decided it wanted to fall backward, no where to go, right? Wrong! It propelled me around and I ended up slamming my side against the rock face. I didn't think I was hurt until the next day and stupidly waited all weekend to seek medical attention on Monday even though my legs and abdomen swelled up HUGELY (internal bleeding, right?). It was late and I was clearly not thinking clearly. So on Monday I went to my hometown medical office where the PA said I had a bladder infection. I urinated about a tsp 1/2 of straight blood and there were white cells in there. So I took my one pill of antibiotic for the day, but had another appointment the following day at the "big" hospital, no it really is on the nation's top 50 hospitals, just no scoli doc there. So my appointment was for Botox, but I was still sore on the side that I swelled up on. I just wanted to know if I had a rib fracture, so I went to urgent care - so I thought. They have three levels there: 1. Urgent care, 2. Emergency Room, & 3. Trauma. As I was being wheeled off to the CT scanner I asked the technician, "I'm not in urgent care, am I?", Duh! I was in TRAUMA! The trauma doc did NOT believe I had a kidney infection, since NO white cells were detected after only one dose of antibiotics. He surmised that I had damaged my kidney and possibly had a small liver laceration. But, since I waited so long to seek real help that they were healing on their own. SCARY. I'm just glad I didn't bleed to death in my sleep. I don't know why I'm so stupid about getting to the ER when I KNOW I'm truly hurt. I need to stop that. That was July 3rd that I had the injury and I didn't get real help until the 7th!

Moving along, it was mid-August and I thought my balance felt fine, so I thought I would take a little bike ride with my grandson. NOT! I can't ride a bike anymore. So I gave up trying. I was just sitting on the seat of my bike watching my grandson get up from a minor spill down a grassy hill next to my yard. The next thing I know I'M the one rolling down the hill! It was a flip backward as the bike stayed on the sidewalk and I didn't. My right knee looked really banged up and as bruised and bleeding from a pretty clean laceration from I don't know what. It was my left sided ribs that really stung. I lay there for a minute, poor grandson thinking I'm dying from my knee (I didn't even feel any pain there - he pointed it out). So it started feeling better and I went on to play kickball. Later that evening my left mid-gut on the left started hurting REALLY bad. I'm thinking to myself, "there's nothing over on that side...?" Then I thought SPLEEN. This time I DID go to the good hospital where I was treated very rudely by the intake nurse who sent me to URGENT CARE unbeknownst to me. I couldn't understand why they weren't taking me seriously. Because I have a pain contract so they were hesitant to even give me anything for pain. They took an x-ray and I did have a broken, NOT cracked rib. I was told to go home and see my PCP the next day. When I called them they told me to get straight back down there. It was morning and my son took off work to take me. By this time the pain was so bad I couldn't even walk. This time I ended up in TRAUMA again. They tried to lay me back and I swear the whole hospital could have heard me scream. It was worse than childbirth! The doc said, "I'm not touching her until you get pain meds into her!" They gowned and doped me and I was finally able to lay down. The ultra-sound didn't show a ruptured spleen. They put me on a lidocaine patch around the broken rib and wrapped me. I thought the practice was obsolete, but was really done to keep the patch on. I was instructed to come back if the symptoms didn't improve. The belly pain persisted even though the rib felt better, so I went back. This time to the ER where the lady doctor left me literally crying in pain for an hour until I could get into the CT scanner. Then she wanted the meds pushed right before the scan. Well even though it was in my IV, they didn't take hold and I'm crying like a baby trying to switch tables. The belly pain was so severe! I found out that a spleen can rupture DAYS after an injury like that, thus the instructions to come back. Thankfully, no ruptured spleen. What happened was the nerve that ran along the rib to that organ was bruised causing it to feel like it was damaged. So, because I had a full break in the rib it's a roughly a 12 week recovery time rather than if it were cracked which would have been about six weeks. Ugh! So I diligently did my breathing exercises, which was super rough. I had to do it 10 times every waking hour as I was scheduled for wrist surgery only two weeks after the break.

Gradually the belly pain got better, thankfully before my surgery. The surgery went great with about a week of healing time of surgical pain vs. the MONTHS that it took the two times I've had it operated on before. I asked my grandson's pediatric hand surgeon (another long story) that operated on him when he was only two, if he did adults. He agreed to do my wrist and BOY oh BOY does it make a difference in the quality of surgeon you have! I'm sure the same holds true with these back surgeries... I know now I just might be headed that way. I'm pretty sure that I won't pick "my" surgeon. He's not consistent with what he tells me and he loses a LOT of blood, or rather his patient's do. My rib still aches, but I'm still within my 12 week period. I stupidly took my grandson to the county fair and was talked into going through a funhouse that is designed to make you fall at every turn. I made it through the whole thing with him until the end. It had a giant tumbler you have to run through. With my walking troubles (I thought I was in full remission, NOT) I kept falling. The first time I fell I told the carnie to shut it down. He ignored me. I tried two more times, each falling on my wrist (forgot my wrist guard and was only two weeks out) and my RIB. So finally I just stood there with a zillion kids behind me and yelled at the carnie to shut it down, I have a disability! So finally he did. But I think that set me back with my rib because that's where I primarily landed, thus the rib aches.

I took myself off of the gabapentin. Hubby looked it up and one of the side effects was water retention. It said to inform your doctor right away if this happened. But as I mentioned before he ignore me. My feet were so swollen in literally hurt my ankles to walk. I weaned down week by week an my ankles finally quit hurting and I lost 10# of pure water weight!

So that's my story. If my scoli keeps progressing at the rate it is...over 2o per year. I may end up having surgery. I don't know. This neuromuscular disease that I have is so unpredictable that I will have to weight the benefit/risk ratio. My neck and upper back are in constant pain, but it's a dangerous area to operate on. I will keep you all informed. I haven't forgotten any of you and the encouragement you've given me over the years. I'm not even sure if this thread is appropriate here anymore since I don't have idiopathic scoliosis anymore... Linda you can decide that one if you wish.

Thanks for all of you who've plowed through my very long post. I need to post more often, but honestly have been tired of getting on the computer. There are quite a few of you near and dear to my heart. You know who you are and I'll probably get courageous enough to share e-mails over PM one of these days. The support here is great and I'm immensely grateful for this forum. It has been a real life saver.

Love you guys!
Rohrer01

LindaRacine
10-17-2015, 11:57 AM
Rohrer...

It is definitely appropriate.

Sorry to hear that things continue to worsen. I can't remember... have we ever discussed camptocormia or bent spine syndrome? I'm starting to see more and more similarities between you and several of our patients.

--Linda

Susie*Bee
10-17-2015, 01:46 PM
Hi Rohrer! I've thought about you often and wondered how you are doing! It sounds like you have had some major difficulties plus the progression, and I am so sorry. Thank you for posting the update. My gosh, you have done some pretty brave things, what with your hiking and biking! Now if only you can cut down on the crashes and breaks! That is pretty scary... Sending love and hugs your way- Susie

Pooka1
10-20-2015, 07:20 AM
Rohrer! Thanks for posting. I wonder about how you are doing. Nice hearing from you.

So sorry about the falls. Please take care.

Sharon

rohrer01
10-24-2015, 02:38 AM
Rohrer...

It is definitely appropriate.

Sorry to hear that things continue to worsen. I can't remember... have we ever discussed camptocormia or bent spine syndrome? I'm starting to see more and more similarities between you and several of our patients.

--Linda

I've never heard of that before...(I will be looking it up). Is it a disease or a symptom, possibly both? I honestly think this is some unknown dystrophy. It has scoliosis as a symptom, but not ALL of my family with symptoms have scoliosis. My dad didn't and my sister doesn't. When I went for my Botox on Tuesday we heard the "dive-bomber" sound that my neurologist was looking for to confirm MMD. However, I was genetically tested for both types and came up a big fat zero. But the CMT gene had two mutations, a carrier for a less dangerous recessive form and an unknown mutation on an area of a dominant and very dangerous form of CMT. Who knows, this could be something totally new, especially with the dive-bomber EMG. That is usually diagnostic for MMD.

My curves are a very conservative 46o, 38o, and 6o from THIS hospital's last report of 42o, 32o, and 0o. That's only in two years time. I know that Dr. Tribus told me 46o, then changed his mind and Dr. Hey said 46o the same year. But I'm going by what THIS hospital says as a comparison because they have always been on the very conservative side and I'd rather go with the same institution, conservative or not, for comparison.

rohrer01
10-24-2015, 03:12 AM
Oh, I definitely don't have camptocormia. I stand very tall. My neck will only droop because of the Botox injections. But it never droops unless I'm looking down as to read or to write. However, my neck muscles get tired and will sometimes spasm or just plain make my cervical and upper thoracic vertebra hurt.

rohrer01
10-31-2015, 07:35 PM
Susie and Sharon,
I didn't forget you! Thanks for responding and thinking of me.

I'm glad that you both have a sense of "normality" to your lives now if there is such a thing!

Sharon, I hope your girls are still doing great. It's actually very nice that you stay here and encourage other people since your girls are done and moving on with their lives. The same goes for you, Susie. You could have dropped out after recovery like many do, I'm sure. TiEd's another one who persists in trying to be helpful an positive. I surely appreciate those of you who continue on here years after... There really are kind people in this world. :-)

My DIL isn't faring as well as she went to a sub-par surgeon. Her parent's didn't know any better and knew nothing of Shriner's Hospitals for children. She has constant pain above and below her fusion and the doctor didn't do the greatest job untwisting her. I don't think it really started to bother her until she was like 21 or 22, but then she was doing heavy construction work. I think it put too much stress on her lower and upper spine. She's needed daily pain meds since she was about 23/24.

rohrer01
01-16-2016, 12:26 AM
I'm leaving a LOT of the other similar post out, as I see I have already updated on things mentioned there. So here is why I'm sad and frustrated with my hypokyphosis.

I have concerns that about brought me to tears after coming home from a visit with the GI doctors yesterday. Due to the events mentioned above, there are a LOT of imaging studies on me. I've had a CT/angiogram, two recent CT scans with contrast and several x-rays for abdominal pain. I have difficulty swallowing and have had several very unpleasant tests done for that. After the doctors collectively reviewed my scans after my swallow study came up abnormal, they were able to rule out a tumor or scar tissue around the opening of my stomach (cardiac sphincter), which is constricted. Oh, and after an endoscopy, I found out that my stomach is twisted just enough that it could easily twist around, which is an emergency.

What they DID find that has me concerned is that my aorta is putting pressure on the cardiac sphincter. My heart is already displaced and deformed, along with all of the valves due to underlying scoliosis. My reason for writing this is that all of this is caused by the severity of my hypokyphosis. Apparently there is no room for a trachea, esophagus, heart, stomach, or even an aorta in the very limited space that I have between my sternum and spine! Of course, the heart is the first thing to move, but I never would have attributed my GI issues to my scoliosis. That aorta has me freaked out!

I wish the doctors would quit focusing on frontal angles and look at what the hypokyphosis is doing to people. They don't pay any attention to the sagittal view except to see if you are leaning forward or backward. No measurement was taken of my hypokyphosis. I think I'm going to e-mail that neurologist and ask for another referral to see my scoli doc, just to discuss it with him. IF I ever have surgery, I don't want to wait until my muscle disease progresses so far that it puts me at too great of a risk.

The only options the GI people gave me are the choice of two meds (I'm already on one). The other one is Viagra! She says it causes headaches and blurred vision, things I already fight with, no thanks! Option two is Botox to my cardiac sphincter which WILL cause acid reflux, no thanks, again. She said my final option if I wouldn't do that is to eat pureed food. No thanks there either. See why I want to cry? Grrr... I said I would puree it with my teeth! LOL

I never really stopped to think about ALL of the implications of hypokyphosis! Yes, I was alarmed when I found out about my heart. But it is working fine. I never realize how it affects everything else. I always thought one of the "benefits", if you will (no offense meant), to having scoliosis and being fairly balanced was my very straight posture. It hides my curves and I can dress around it and no one can even tell I have scoliosis. I can tell you first hand that there are no benefits to having such a small space to fit so many vital structures in!

Sorry for the very long vent. I just thought more people would read this if I posted here. I felt it was important to get this information out. Maybe one of the scoli docs will read it and take hypokyphosis more seriously...

I'm tired of all the torment I go through with the tests and treatments... :'-(

Sad and afraid,
Rohrer01

Susie*Bee
01-16-2016, 08:25 AM
Dear Rohrer - I appreciate the update and want you to know you're in my thoughts and prayers. How good of you to warn others about awareness of hypokyphosis and its possible complications, all in the midst of your present worries.

I am so sorry about the GI problem, as my sister has that as well-- has for years and years. We live 2,000 miles apart and I haven't asked about her problem lately, as she has many other medical issues as well (LUPUS, lung, etc). I DO know that she has had to go to the ER and then admitted to the hospital due to total stomach twisting/cutting off that was life-threatening at least once or twice and so for several years has been very strict about what she eats. She appears to eat fairly normally but there are many foods that don't break down at all, (fiber foods, I think), no matter how much you chew... so they can cause blockage at the twist/turn. So she is very selective.

Did your swollen feet/leg problem completely go away when you stopped the gabapentin? I have that problem and I have a swollen throat problem also, Mallampati score of IV. We can talk more about those if you want. I think mine are related to the CMT. Take care-- and thanks again for letting us know how things are going. You can get through this. You are a determined person!

rohrer01
01-19-2016, 12:24 AM
Susie,
Yes, the swelling went completely away eventually. I lost about 10# of pure water weight. I believe that's about a gallon of water! It hurt my ankles to walk. Sadly, that water was the LAST to go. But it finally did. I titered down on the dosage as you are NOT to quit suddenly. It was developed as a seizure medication first

Hang in there with the CMT. I did read on the MDA official website (I'm pretty sure that's where) that you can have symptoms even if you are just a carrier. It depends on the type and severity of the CMT. I'm sure there are many mutations on that gene that they aren't aware of, yet. And yes, I've heard of CMT forums. I think all forums are similar, but they all have their own formats and things that are and are not allowed. I've checked out other scoliosis forums and read some experiences. I never joined because the format here is easier to follow. Plus, there isn't as much pseudoscience here.

I had a nice talk with my niece (the one who I suspect is affected with the "whatever" it is we have). Her neurological symptoms are WAY worse than mine were at her age. She's only 31 and already has the sciatica down both legs to her toes. She has numbness in places including the center of her back AND a whole lot of pain that no one will treat her for! They're so stinking afraid of people becoming addicted to pain medication that they forget the human suffering factor. She also has scoliosis and will be finding out the magnitude of her curve/s soon. I'm pretty sure she's not surgical, but with this "family" disease, I think it is the cause of the scoliosis being more painful than average. The only thing she's been tried on is ibuprofen (which helps her the most), Aleve, and Diclofenac, which neither of those other two work for her. She has FIVE children, works and goes to beauty school FULL time. She's fortunate to have my sister to help. But my sister is "affected" as well and has adopted five children other than her three biological children. Four of these children are small. So my sister watches NINE children (only four of the nine are in school) all day long every day except maybe the weekends. I'm glad that my niece reaches out to me on occasion. It's helpful to get an empathetic ear, not saying her mom isn't. Her mom, my sister, being affected is just worn to the bone by mid-day, but is fortunate to have pain medication and be able to stay home with the kids. It wouldn't surprise me if my niece decided to move in with me temporarily and settle in my state as we have a much better health care system than the state she lives in. She would also be able to see the same doctors that are familiar with my case and get more of the help she needs. We'll see.

Take Care,
Rohrer01

Susie*Bee
02-01-2016, 08:26 AM
Thanks so much, Rohrer, for the informative post. So sorry to read about your niece-- so busy and with so many problems. I read about people who are terribly afflicted with their CMT in this facebook group which is directly part of the Charcot Marie Tooth Association; the little children are the ones that break my heart (parents writing about them). The one thing that is easier on facebook than in a forum is that you can merely "like" a post, jump in with a comment, show encouragement... you don't have to post.

I think I already told you that mine is CMT2 based on the EMG and nerve conduction study. My neurologist sees no need to do genetic testing since my mother had CMT and we have narrowed it to this basic type. There are so many CMT variants that genetic testing doesn't test for, and it's so expensive. So I guess I'll settle for knowing it's an axonal CMT, not myelin sheath. I have been having, on and off, a lot of horrendous burning with extreme pressure type pain in my legs at night. In my "twilight" the other night, all I wanted was to have my legs amputated at the knees! Oh dear! Of course that is not going to happen and I don't need that, but at the time the pain was so intense. Fortunately it isn't like that too often, but twice in the last 2 weeks. I ALWAYS (as in every night) have stinging and cramping in my feet that causes contractures-- really hard to stand up when you can't straighten your feet out from a rigid clawed shape from heel to toe. Sometimes it is in my shin and/or calf as well. I know I'll get through this ok, but it's not much fun. So far my drop-foot hasn't progressed too much, so I can get around fine. I just can tell I'm losing some of my former strength.

All in all, I consider my situation to be do-able and am busy with life. "You get what you get and you don't get upset" or "you git what you git and you don't throw a fit"... always fun sayings from when I worked at the elementary school. Ha ha! They fit so well with other aspects of life...

Take care and keep us posted. I have had this thread open forever, intending to answer, but have been very busy. I am taking my first online course and it's been interesting learning my way around the technology part of it as well as the course itself. Hugs, Susie

rohrer01
02-12-2016, 02:54 AM
Wow, Susie!

That burning/stinging/stabbing pain is something I fight in my lower sacral area and down my left leg. I have more of a tooth-ache down the right, which is how the left started.

I just has bilateral SI joint injections and they gave me a ton of steroid because I got thrush afterward, lol. NOT fun. But the injections gave me about 75% relief, not saying the pain is gone. I couldn't stand to have anyone sit next to me on the couch or in bed as every time they moved it sent that jolting pain into my back and down my leg. It feels like bee stings in multiple areas at once and runs down a pathway! No fun at all.

My feet have been hurting. My heels hurt where they touch the bed and my toes hurt where the covers touch them. It wakes me up at night. My feet don't cramp or have high arches like yours, though. I actually lean more toward flat-footedness. My daughter is completely flat-footed. But I suspect she also has Ehler's Danlos. Her cousin does. I don't, but am more flexible than most people my age except my hamstrings.

I'm having more pain symptoms down my arms now. It's funny that my EMG's always show up "almost" normal. That's why they are having such a hard time even with my leg pain. It just doesn't show anything...

Just frustrated. It sounds more and more like a CMT type disease the more I talk to you, though. I have an unknown mutation on "the worst" CMT gene segment and I'm a carrier for a lesser type. I would have never thought of CMT. My geneticist is the one who thought to test me for that. They really thought it was MMD and are still baffled but have given up on finding a diagnosis for me for the time being. That's discouraging to me as I become gradually paralyzed.

Take care,
Rohrer01

Susie*Bee
02-12-2016, 06:50 AM
It's so good to hear from you again, Rohrer. I am so sorry about your pain, but it's good to know the SI joint injections helped. Ah, yes, thrush... I developed a bad case of it back in college when I kept getting strep throat and tonsilitis, over and over, so was on antibiotics. They can kill everything and allow thrush to thrive... My throat/mouth looked so white!

Regarding your feet... mine do that too. I sleep with a small (baby sized) pillow down to rest my heels on (plus a pillow under my knees) and hope for the best with the sheets. They sell something that I've wondered about-- not sure if they work or are comfortable or not, called night splints. I know I saw one that kept your heel elevated a tad to prevent pressure, plus is a little longer than your toes, to keep the sheet from touching them. Here is one I found on amazon, but is not the one I'd seen before. I don't know if spending that much is worth trying it out or not. I'm ok with my pillow and try to keep my toes pointed straight up so nothing touches the tops of them (90ļ angle). http://www.amazon.com/Pro-Tec-Night-Splint/dp/B001FYEINA/ref=sr_1_14?ie=UTF8&qid=1455278031&sr=8-14&keywords=heel+and+toe+support+for+sleeping

I still have swelling and need to have an ultrasound. From what I've read, this is something that happens with CMT (for some) because the muscles aren't working well enough to send the blood flow back "upstream" and so it leaks and pools. They are still swollen in the morning and often my big toes are numb when I first get up. Better get that done!

All the best--Susie

rohrer01
02-12-2016, 01:33 PM
The swelling issues are CMT related? It's been getting worse the older I get. Wow, I'm learning so much from you!
I can't take gabapentin because I gained a gallon of water! It got between my ankle bones and made it very painful to walk. I literally couldn't fit my feet into any of my shoes. I have long skinny feet and they got very fat. From what I've read, CMT isn't supposed to be this virulent. Maybe it's that "unknown" mutation on the section of the gene that causes the worst form of CMT or a combination of both mutations. As it stands, they don't consider me a CMT patient. We just treat symptoms as they crop up and get to a level that I can no longer tolerate.

Right now they are trying to figure out how to help me swallow. They want me to puree all of my food. I said I'd puree it with my teeth! There is an enzyme in your saliva called amylase that starts the digestive process of breaking down starches into sugar. So the longer you chew, literally the more nutrition you get from your food. I don't want to bypass that process unless it's absolutely necessary. My dad was able to "eat" until he died, although he did have to go to puree the last couple of years. I was supposed to have an internal ultrasound procedure this week that I had to be under general anesthesia for, but the nurse gave me the wrong day and time. My aorta is pushing against my esophagus and the sphincter between my stomach and esophagus is very narrow. Water doesn't even go down very quickly and can back up. They want to make sure that it's "just" a muscle spasm and not scar tissue or something else. They've ruled out a tumor and such as I explained earlier. I'm just bummed that I have to wait another two weeks. Botox to the esophagus is off the table now because it has to be repeated so often and can cause scar tissue, so I'm told. My other options are balloon dilation, which is stupid to try on a sphincter in my opinion, or surgery. I'd let them try the balloon dilation first, of course, before consenting to any form of surgery. I might just live with what I've got for as long as I can.

Everything else just seems so much like ALS and there's no test for that. I can be walking normally and my legs will just get weaker and weaker until I'm hanging on to a wall or door jam hoping not to fall until someone rescues me! I don't leave home alone without my walker. If that were to happen I could sit down. If my legs were completely paralyzed where I couldn't push myself, then I would just call one of my sons to take me home. Fortunately it's never happened in public anywhere except at the doctor's office after receiving certain medications. Lidocaine is a biggie if I get enough. But it did happen one time, but I was surrounded by family and friends at our gathering. So lots of help available! I could never get by with a walker that didn't have a seat and wheels and breaks! My arms are getting weaker, too. It's ironic because it seems that the more active I am, the worse it gets! I have a whole gym at my house and am afraid to use it. I keep telling hubby that I'm going to get back to it so I can know for sure. But if it IS doing damage, I'll be in trouble.

I'm glad you found a solution with your feet. I can't put pillows under my heels. It would make it tighter under the covers. I sleep with my feet folded inward and flat most of the time. I know it sounds weird, but my feet have naturally taken that position since I was born. They wanted to brace my feet and legs when I was a newborn and my mom wouldn't let them. So the doctor told her to put my shoes on the wrong feet. All that did was confuse me when I became school-aged! I walk normally with my feet straight until the weakness sets in. Then I'm pigeon toed and knock-kneed (my legs are straight it's just the way they turn).

Thanks for keeping up with me! You've actually given me a lot to think about and ask my doctors about. It's just the gradual paralysis that really scares me because eventually you lose your core muscles and can't cough. That's how my dad died. They never offered him a chair he could use with his mouth or a tracheotomy when he had trouble breathing. They didn't even do range of motion on his arms and his elbows fused. THAT infuriated me! I wish I had lived closer. It just wasn't possible and I have a sister that lives down there in AZ close by. There were insurance matters and doctor matters that weren't properly handled. It was a mess. He couldn't get transport to his doctor because he lived one block out of his insurances transport route! So once my tiny step-mom couldn't get him into the car... no more doctor visits except a hospice doctor that saw him once or twice a year. Then he said he could go on forever the way he was and kicked him off hospice within two months of his death. Fortunately, he was able to get hospice with a different company. But they came in and took his bed, hoyer lift, oxygen, washable moisture pads, and every piece of equipment that was "theirs" and left him sitting helplessly in a chair. Grrr... Now I'm getting angry! The new hospice people got there that evening with new and very inferior equipment including a very hard mattress on the bed, which I think was a crank bed (not quite sure) where he used to have a mattress that would inflate air in alternating spots to reduce his bed sores. I think she did get another one, but again wasn't as nice.

Sorry I got off topic. I might die from this, but NOT like my dad.

Have a good day. I feel better after venting.
Rohrer01

Susie*Bee
02-12-2016, 03:44 PM
I'm SO SORRY about the rotten deal with your father. Yes, you needed to share that with us. It is so unfortunate when people are viewed more as objects. It must have been very difficult for all of you to watch the unfairness and harsh treatment of his situation.

As for us, whether it's CMT or something similar, many factors come into play. I am going to put a few links on here, although you may have read all this before. But that is how I came up with the swelling being a symptom of sorts... I've read it in more than one place, and I try to stay with legitimate sources. One of these is from a person (Linda Crabtree) but she seems to be published in medical circles. Take them or leave them as you want.

http://www.lindacrabtree.com/cmt/feet/feet_article3.html

http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm

http://www.hnf-cure.org/podiatrics-and-cmt/classic-cmt-foot-symptoms-treat/

http://www.ohsu.edu/xd/health/services/brain/getting-treatment/diagnosis/neuromuscular-disease/about/hereditary-neuropathy.cfm

You can see, especially from the more lengthy ninds/nih.gov article that CMT (and related peripheral neuropathies) can affect all the different nerve types- motor, sensory, and even sometimes autonomic. (I still remember, from my comparative anatomy class in college, the little sayings to help you remember the order (On Old Olympus Towering Top A Finn And German Viewed Some Hops - the first letter is what the nerve name starts with, and then whether they were motor, sensory, or both-- some say marry money but my brother says bad business marry more). Ha ha. The other widely accepted name for CMT is hereditary motor sensory (peripheral) neuropathy, and occasionally also affect the central nervous system.

I, too, occasionally have trouble swallowing. I even did way back in my early 30s and had it checked out... the ENT said it was muscle tightening. I don't know now what is what. But I get a coughing fit sometimes just from breathing and food and/or water sometimes don't want to go down. I guess we'll explore this added adventure but not with a lot of enthusiasm! It is what it is.

Your foot story reminded me of my youngest daughter. She was born with feet that curved in some, called metatarsus adductus. Looks like you're pigeon-toed but it's actually your metatarsal bones that are curved. They said at that time (she's 30 now) that if we casted her feet before they ossified, it would correct that. But you had to do that by about 18 months or else they would be "bone" and would need to be broken in order to do a fix. So when she was walking around 1+, she had plaster casts on both feet. She managed to run around pretty well with those! Then we had to buy some orthopedic shoes that looked like sturdy sandals but with a curve going opposite of what would be normal, so like wearing your shoes on the wrong feet, as suggested. She also had flat feet and we bought custom orthotic inserts for awhile, but boy, they were expensive! She is fine -- ran track and cross country and seems to have no problems. I always thought her foot problem happened because she was so big (9 lbs. 10.5 oz.) and I am very short torsoed... so there was no where for the feet to go but to wrap around in a strange way. Now I wonder.

Take care. Keep us updated as you find out more.

rohrer01
03-14-2016, 11:43 PM
Susie,
I get hiccups when my food doesn't go down. That means I get the hiccups a LOT. I'm a muncher since my tummy is twisted and doesn't hold that much food. Thanks for the links. My neurologist says it's muscle disease, but CMT is listed as one of the diseases on the Muscular Dystrophy Association's website. They don't call it MD for "muscular dystrophy" anymore. They call it MD for "muscle disease". It's funny how terminologies change over the years. They have just found too many diseases, including neuropathies, like CMT, that affect the muscles. That's why the change. I read it somewhere, not sure where because I was reading so much.

Anyway, I'm going to try to upload some new, eh hem, radiographs and an MRI from 2014 and 2015. Eeek, I'm slow!

I hope you're doing well!
Rohrer01

rohrer01
03-15-2016, 01:45 AM
I say "new" because the x-rays are from 3-2015 and the MRI is from 9-2014, Eeek! Sorry, but you can all see for yourselves if I remember how to do this. LOL

1818
1819
1820
1821


I put one more in here to show my L5/S1 that some lady I saw said wasn't blown. I have the sliced view of it, too, but my markings didn't come through so many people might not be able to tell where it's actually in the canal (no actual spine down that low) and pinching some of the nerves in there AND restricting the outlet of the nerve on the left, actually touching it on one side. She must have been showing me something from years past because I never saw what she showed me on this set of MRI's. I hate it when people mess with you because they don't want to deal with it. They get PAID to take care of this.

By the way, I am going to make an appointment with the chief neurosurgeon about my whole situation with the aorta and sphincter putting pressure on each other along with my twisted stomach. All this GI stuff is caused by the scoliosis. How do I know that my angina isn't caused from pressure on the aorta? It's pretty close to the heart right there. Looking at those MRI's opened my eyes quite a bit. I have bone spurs on C3/4 and C4/C5 both restricting my spinal canal. The top one looks like it's just touching the cord. And they said it was mild? The MRI revealed that my spinal cord is really pinned to the side of the canal in the T1-T3 area. I don't know how you folks with huge curves make it. Maybe it's WHERE the curve is? Still, after all of these years of looking at the forum and asking my doctors, no one has EVER seen a curve like mine. Keep in mind when you look at these that the highest curve goes to the LEFT. It may not look that way on the pictures.

Also, I measured the distance of my spine to sternum. It varies between 4 to almost 6 cm. My heart isn't even under there anyway. So if someone tried CPR on me I would die. There seems to be great vessels and bronchial tubes there. The heart really takes up the lung space on the left. It's really weird looking. I can see my right carotid artery really stretching across as it goes up my neck. Cool things those MRI's are. On the right side the spine is directly under the right lobe of my liver. Woooo

Enough talk about what I saw. Here is what you guys get to see!

Enjoy!
Rohrer01

rohrer01
03-15-2016, 02:13 AM
Here are the coronal x-rays from 2005 to 2015. You will see the progression much more viewing them this way. Notice that in 2013 the apex of my primary curve shifted from one level above my clavicle (collar bone) to being even with the collar bone. That was around the time I had just started getting Botox injections. I haven't counted vertebrae to see if it is the same one or not. It could be that the clavicles have dropped a bit by not having so much muscle bulk. You can see the muscle mass that I had on the left shoulder is noticeably GONE. My clothes fit much better now.
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1825
1825
1827

That was a LOT harder than I thought. I forgot to crop out my personal information and then every time I tried to post these here it would say invalid or be a duplicate. Let's hope I got it right. I previewed it and it worked then. Let me know if you have any trouble viewing and I'll see what I can do.

Good night everyone. I'm exhausted!
Rohrer01

rohrer01
03-15-2016, 02:17 AM
I don't know why that 2013 is there at the bottom. I didn't put it there and I can't get rid of it. At least it's cropped. It's just another duplicate. It doesn't show up when I preview my message and when I try to edit it's listed below with no way to remove it. Please ignore it.

Nighty night... (sleepy face)

Pooka1
03-15-2016, 07:24 AM
I understand your frustration with uploading these things. I recently had to give up when I couldn't get a file to be < 100 kb (or whatever the size limit is).

Wow you have a very high curve! I can believe that is painful.

rohrer01
03-15-2016, 02:50 PM
With the MRI showing the disc herniation, you have to look toward the spine to see the disc material spilling over. I have one MRI slice that shows the edges are bone on bone and the other, as I mentioned shows the disc matrix spilling into the canal space. I just chose not to upload those ones as they aren't as easy to read. Maybe I'll show the bone on bone one. At least the whole disc isn't sitting on bone, just the edges. But still painful.

This is why I don't know how a spinal fusion would go. The increased weight of the hardware would definitely exacerbate the lower back pain.

I also noticed that the SI joint that hurts the worst has a gap between the ilium and sacrum. I noticed that on someone else's x-ray who was also complaining of sciatic pain on one particular side.

titaniumed
03-15-2016, 05:39 PM
Rohrer

I see your progression.... Your neck looks so painful....it actually hurts my neck.

Jay on SSO in England was fused up high and into his neck.....the surgeon did a strut graft, which is a rare thing these days. I believe they fused him from T10 up to C4. He has a bit of kyphosis.....

In the past, I have mentioned how I was ready to move to San Francisco for my surgeries....Of course, that was many years ago before we had a scoliosis specialist here in little old Reno. I think that its important that you pick the right surgeon from the start and if moving is part of that, its important. Many have traveled in the past, flown in and flown back, but this doesnít make things easy. Melissa is a good example who was done in NC, and was given up on until she moved to Southern California and found Dr Bederman. If you have several things on your plate, a move ďmightĒ be worth entertaining.

Having 100 specialists within an hours drive makes things easier.

Ed

Susie*Bee
03-16-2016, 10:28 AM
Susie,
I get hiccups when my food doesn't go down. That means I get the hiccups a LOT. I'm a muncher since my tummy is twisted and doesn't hold that much food. Thanks for the links. My neurologist says it's muscle disease, but CMT is listed as one of the diseases on the Muscular Dystrophy Association's website. They don't call it MD for "muscular dystrophy" anymore. They call it MD for "muscle disease". It's funny how terminologies change over the years. They have just found too many diseases, including neuropathies, like CMT, that affect the muscles. That's why the change. I read it somewhere, not sure where because I was reading so much.

Anyway, I'm going to try to upload some new, eh hem, radiographs and an MRI from 2014 and 2015. Eeek, I'm slow!

I hope you're doing well!
Rohrer01

Thanks for the response, rohrer! Yes, I've read a lot about CMT in the MD site, but had not even noticed the change in the "D" word! I think CMT was originally included because even though it is nerve generated, it affects the muscles because they atrophy-- and with many, this begins with babies and tiny tots. Some of the muscular problems are extremely so and heartbreaking. I have seen so many surgeries (many repeatedly), AFOs, and wheelchairs on the CMT facebook site!

I also cannot eat very much at one time. Never more than 1/3 to 1/2 of a normal helping. (Half a hamburger or grilled chicken sandwich, etc.) I am "fed up" (pardon the pun) with the ups (mostly) and downs (very few) caused by my medicines they try me on. One caused a weight gain of 25 lbs. in 3 months, none of which I've been able to take off. Then I recently was put on a different one and gained 10 more. I already have healthy food choices and don't eat much. It's the exercise that is difficult, but then I don't have as much energy, have arthritis, and as you know, weight-bearing exercises aren't very good for CMTers. And a gym is at least 30 miles away for me, so swimming would be difficult. Aughhh! Plus I know extra weight causes more problems, so it's a vicious cycle. I went from a size 6-8 a couple years ago to probably a 16 now. I hate to go shopping! Up and down is not good. I am quite depressed about this.

I was impressed by your radiographs although I am not good at reading them except at a fairly basic level. I thought we almost looked like a mirror image in one-- the one you added afterward-- as I compared it, but I am probably missing seeing things. Your neck curve starts sooner, but not by much (I think) and yes, it looks painful. It is an area that I have always had a problem with, but not to your extent... And even now, being fused to T2, sometimes my neck bothers me, but I think I have arthritis there. I often wonder if my neck is the cause of my migraines, as the pain often travels down my neck and into my back. Here is my x-ray that "at a glance" reminds me of a mirror of yours (the 2013 one)-- our ribs, the curve (although that is not my major curve) but maybe you (or someone else) can help me understand the differences. http://i244.photobucket.com/albums/gg25/SusieB1951/Rush%20digital%20x-rays/3.jpg

I feel so sorry for your plight and all that you are going through. Know that I am thinking of you and praying for a solution of some kind.

I am doing "mostly" ok. I get by and count my blessings. I will see my scoli doc sometime this summer and he doesn't know about the CMT part yet. That should be interesting (smile). You take care and please know that you mean a lot to me. -Susie

Also, there was a lady several years ago that had her big fusion surgery and then shortly after that needed cervical fusion also. She seemed to do ok. She had a blog I used to follow... Anyone remember her name?

rohrer01
03-16-2016, 10:32 PM
Rohrer

I see your progression.... Your neck looks so painful....it actually hurts my neck.

Jay on SSO in England was fused up high and into his neck.....the surgeon did a strut graft, which is a rare thing these days. I believe they fused him from T10 up to C4. He has a bit of kyphosis.....

In the past, I have mentioned how I was ready to move to San Francisco for my surgeries....Of course, that was many years ago before we had a scoliosis specialist here in little old Reno. I think that its important that you pick the right surgeon from the start and if moving is part of that, its important. Many have traveled in the past, flown in and flown back, but this doesnít make things easy. Melissa is a good example who was done in NC, and was given up on until she moved to Southern California and found Dr Bederman. If you have several things on your plate, a move ďmightĒ be worth entertaining.

Having 100 specialists within an hours drive makes things easier.

Ed

So here are MRI's of my neck from 2010 and 2014. You can see the progression of arthritis there in only four years. It looks like there will soon be some major compression of my spinal cord at C3/4 and C5/6. I know I said on the other thread that I said C4/5. That is because that is what the doctor told me. He later could not find any compression at C4/5 because it's at C5/6!

It hurts to put even the slightest pressure on my c-spine. I don't get zaps or tingles. But, I dare say anyone that pushed that hard would get an involuntary push right back unless my arms went numb, then it might be a kick!

2010:
1831 Notice C5/6.

2014:
1830 Notice C3/4 and C5/6. The higher one seems to be worse.

Do you or anyone else know what they do for these when the bone spurs go toward the spine and not away from it? I can't think of how they could even reach that area... :-(

Rohrer01

The attached image is one that I found in the 2010 collection that looks like a bulging C3/4 disc. The 2014 one looks like bone spurs around where the disc was bulging. I'm not a radiologist. But in 2010 they couldn't capture them both in one slice like they did in 2014. It's been about a year and a half since the 2014's so I don't expect that much has changed. But I am having symptoms in my right forearm, but these are recent. There's a lot of spasms and cramps. This also goes along with my unknown MD.

rohrer01
03-16-2016, 11:11 PM
Rohrer

I think that its important that you pick the right surgeon from the start and if moving is part of that, its important. Many have traveled in the past, flown in and flown back, but this doesn’t make things easy.
Having 100 specialists within an hours drive makes things easier.

Ed

Unfortunately and fortunately I live in the hub of several great places to go. Minneapolis, MN, Rochester, MN, Madison, WI, Chicago, IL, Ames, IA, and St. Louis, MO is a bit farther but doable. So I live in the most central location to some of the best surgeons. My insurance limits me to ONE doctor or facility because of an HMO. They consider only ONE of these facilities as their "center of excellence" as they call it.

Moving isn't an option. The only place I would move to is Oregon and there is only one good doctor there, Dr. Hart, from what I'm hearing. I'm sure he's pretty busy and very hard to get in to see. Southern California is out. Too many earthquakes. I lived on the AZ border and had some of their tumblers knock things off of my shelves. My sister lived in the city of the epicenter of the last "BIG ONE" back in the 90's. She left and NO turning back.

My hubby has a good job and we just refinanced our home to make it more handicap accessible. So we're stuck for awhile. Besides, I really would only live in a town on the Oregon coast that's not in a tidal wave zone, which many are. The real estate is outrageously expensive there. Real estate here is cheap. So even if we got a great price for our home, it wouldn't be a drop in the bucket for something out west. My grandmother was from Coos Bay and I just love it out there. I was born in Portland and lived in Vancouver, WA in my younger years. Many a good memory going down the PCH to visit grandma. Took a vacation out there a few years back and hubby and I almost didn't come home. We actually looked at some real estate prices and about choked. In Vancouver, the house my parents had built in the 70's was the nicest in the neighborhood. A cheaper rendition on the same street was for sale at $250,000!!! My old house would be far more than that. I honestly haven't looked at Coos Bay recently. But I'd have to travel to Seattle or SF to see a doctor IF I could get insurance that would cover me. Maybe when hubby retires. But I'm afraid I'll be too far gone with the MD before that happens.

So do I risk it with the one doctor? Maybe he's better now. I talked to a little old lady that was fused by him. She needed a full fusion because she's an avid skier (lots of skiing here, pppbbbbt, LOL), so he left L4 down undone until she couldn't take the pain. She was in for her revision and she just loved him! He'll probably just tell me no again, anyway. Maybe it's because he's uncomfortable?

rohrer01
06-22-2016, 11:13 AM
I'm just updating my thread.

I got approval from insurance company to see Dr. Folgeson in Rochester, MN. Waiting on appointment.
I also had my first facet joint injections. These were the easiest of the three types I've had for those of you contemplating injections. I was found to be pretty arthritic on the lower left L5/S1 facet joint. Normally, with my injections, my leg pain immediately goes away and comes back as the Lidocaine wears off. Not so with this type. Although the injection sites still hurt this morning.

So the three types that I've had by rank of painfulness: SI, epidural (one incident of an intern touching a nerve), facet.

Rohrer01

titaniumed
06-23-2016, 07:32 PM
Rohrer, I am following....sounds like good news.

In regards to your fears about earthquakes, and tsunamiís, I had a post written up last night about my fears while diving that included sea bass with laser beams on their heads.....then again, you donít see too many of these so, not really a concern.....I try not to worry about these things. 93 people were struck by lightning in India in one day, and out of 1.3 billion people, I guess itís a numbers game. Just trying to figure out why they were all playing golf at the same time? He he

Be sure to let us know how it goes....

I even found a photo of a sea bass! Sometimes you have to wrestle these guys when they attack. I try not to worry about it.

My posts include eccentric comedy when I am in pain....I guess its my way of dealing with the ups and downís of scoliosis....

Ed

rohrer01
06-25-2016, 07:56 PM
Wow! That's one big fish. Do you ever watch "Wicked Tuna"? I never realized how big tunas really are.
I hope your pain is better. I don't remember mentioning those things. I used to live eerily close to Mt. St. Helen's in the Cascade Mountains. Our neighborhood was called "Cascade Park" --- eek! We moved right before she blew. I heard that my neighborhood was coated in inches of ash. I remember seeing the snow disappear and then the bulge appeared sometime during the last year we were there. The family went on vacation a few years back and we drove up there. I was devastated. My brother's Boy Scout platoon use to camp at Spirit Lake.

I'm having a bad pain day today. I had my trigger point injections (sore and bruised up) and took my last clonazepam last night. I weaned off from 6mg/day so the muscle spasms are up a bit and the ticker is ticking faster. I have heart meds for that, though. I'm just tired all the time. That's the reason for weaning off the benzos. I'll keep it around for the really bad days once it's good and out of my system.

Rohrer01

titaniumed
06-25-2016, 10:14 PM
I borrowed the sea bass laser thing from Austin Powers. It breaks up the monotony..... Ha ha.

I have not watched wicked tuna but was on a tuna tournament many years ago in Cabo San Lucas. Tuna fishing is not a great scoliosis activity, hanging onto the rod for hours is a workout. It trashes the back. If I go to the ocean, I dive, its much easier. Some of the tunaís are quite large, some of sushi quality will sell for big bucks in Japan. Approx $800,000.

The Mt St Helens area is a beautiful area......I can see your concern or hesitation on the volcano thing, but, cataclysmic explosions donít happen often....

I have been struggling with the bear traps or gripping in the upper thoracic. Again, I like to say atmospheric pressure, but have no data, records or proof. I have pain and look at the weather maps and notice low pressure systems moving along and it really jacks up my assumptions. I also have a GREAT sagittal balance, and little scoliosis up in this T4-T8 area which is where the gripping happens. Its not alarming pain, but its really starting to bother me lately. I expected problems down low in my surgeries, and thatís been fantastic. I never expected this upper thoracic problem or the herniationís in my neck. I am laying down often these days....

I hope the injections help. Its something I never did, only because communication between my ďpreviousĒ doctor was lacking....(before he retired) I was lucky Dr M came to town.

Communication with surgeons is important. E-mail is the best way through an assistant. I like to establish this communicative subject matter upon the first visit and exchange e-mail addresses.

Ed

rohrer01
06-25-2016, 11:14 PM
Ed,

That upper back and neck pain is horrible. I never expected to have lower back pain as my problem has been upper back and neck pain with arm involvement since I was about 12 which really took a turn for the worse when I was 16. I empathize and sympathize as I know exactly how bad that upper upper back and neck can be. I've had bouts, especially when my kiddos were small and I'd lug them around, where my left arm would be so bad that I couldn't hold a glass of water.

I don't have experience with the bear claw as I'm not fused. But, as of late, have severe muscle spasms that run around between the ribs (intercostal spasms). When it's like that I can barely move. I get trigger point injections into the muscles that are around and under the scapulae that actually help prevent those. The spasms are so painful and feel like there's a tight band pulling the scapulae together and it hurts underneath of them, too. I can barely breathe when that happens. I wonder if what you are experiencing isn't something similar. A little needle work might be worth a try if you have someone feel your back to see if the muscles are hard. I go every two weeks for maintenance to keep it at bay. It mostly works. But, by the end of the two weeks I'm chomping at the bit to get in for those injections. It's just some food for thought for you. Your muscles can't twist your spine around but there are a few muscle groups that attach your fused portion to your neck and head.

My upper back has such a tight twist that I can't move it at all and the muscles resist! They are the resisters!!! That starts a chain reaction in the muscles higher up which leads to nerve pinching mostly down my left arm as always, but the right side is starting to feel "left" out and has flared.

Your bear claws may trigger spasms up higher that make your neck hurt worse. I would talk to your doctor about it. See if he can recommend you to a GOOD physiatrist (MD) that specializes in trigger point injections. Three days of being sore (the first is worst) is well worth evasion of pain.

Anyway, it's just food for thought like I said.

Rohrer01

rohrer01
07-10-2016, 01:30 AM
My dear scoli friends,

Like the title of my topic, it's official that my downward spiral is speeding up. I may not be strong enough to survive a surgery. I haven't heard from Dr. Folgeson's office yet. My guess is that he'll take one look at me and say the same thing. However, the surgery may be lifesaving IF I could tolerate it. I need it so that I can hopefully eat without pain. I've noticed that when I force myself to eat, not only does it hurt but my heart races as well. I have a muscle wasting disease, as you all know. My arms and legs have become very thin and atrophied and I weigh a whopping 108# on my 5'7" frame. I would actually be about 5'9 or 5'10" if not for the scoliosis. I was 5' 8-1/4" at my peak growth at age 15 before I began to shrink despite my scoliosis. I'm sure I must be less than 5'7" now because my scoliosis is worse.

I am weak and sometimes walking is an impossibility. My feet just won't come off of the floor and if I shuffle around too much I lose the ability to walk altogether.

I am bummed beyond belief. I feel like I'm going through the five stages of grief all over again. Right away I felt sad and I still am, but I'm getting angry, too. I want to live long enough to see AND enjoy all of my future grandchildren. I already can't do things with my seven y/o grandson. Life is so unfair. It's bad enough to have the scoliosis but to have this death sentence on top of it all is too much!

That's my update.

Rohrer01 signing out for now.

Pooka1
07-10-2016, 06:55 AM
Dear Rohrer,

I am sorry to hear this. Life is very unfair.

Remember that the median is not the message. You can try to stay above the median and then stretch it out. That is what Stephen Gould learned when he outlived his prognosis by about 20 years. My father outlived his diagnosis by over a decade.

The median is not the message.

Good luck and I hope you continue to check in from time to time.

Sharon

LindaRacine
07-10-2016, 12:46 PM
My dear scoli friends,

Like the title of my topic, it's official that my downward spiral is speeding up. I may not be strong enough to survive a surgery. I haven't heard from Dr. Folgeson's office yet. My guess is that he'll take one look at me and say the same thing. However, the surgery may be lifesaving IF I could tolerate it. I need it so that I can hopefully eat without pain. I've noticed that when I force myself to eat, not only does it hurt but my heart races as well. I have a muscle wasting disease, as you all know. My arms and legs have become very thin and atrophied and I weigh a whopping 108# on my 5'7" frame. I would actually be about 5'9 or 5'10" if not for the scoliosis. I was 5' 8-1/4" at my peak growth at age 15 before I began to shrink despite my scoliosis. I'm sure I must be less than 5'7" now because my scoliosis is worse.

I am weak and sometimes walking is an impossibility. My feet just won't come off of the floor and if I shuffle around too much I lose the ability to walk altogether.

I am bummed beyond belief. I feel like I'm going through the five stages of grief all over again. Right away I felt sad and I still am, but I'm getting angry, too. I want to live long enough to see AND enjoy all of my future grandchildren. I already can't do things with my seven y/o grandson. Life is so unfair. It's bad enough to have the scoliosis but to have this death sentence on top of it all is too much!

That's my update.

Rohrer01 signing out for now.

Hi...

So sorry that things continue to worsen. Life is truly not fair.

We often see patients who are truly too sick to undergo a long fusion, and occasionally find a way to do something small that can improve their quality of life. Maybe it's time to focus on trying to fix whatever is the most intolerable. There's still a relatively big risk that the surgery will actually make things worse by creating a new problem.

I think that, at least sometimes, the best thing we can do is to manage expectations. It's hard not to imagine that life could be so much better. I think you're probably already there. I hope you stop the downward slide, and hit a plateau soon.

--Linda

rohrer01
07-15-2016, 04:15 PM
Thank you both for your kind words. It's appreciated! My dad outlived his "life expectancy" by about five years. In fact, months before he died they kicked him out of the hospice he was on because they said he could go on forever in the state he was in. He eventually succumbed to a cold. He wasn't getting the proper treatment. Once my step-mom could no longer get him into a car to take him to the doctor he never went again. They lived a block away from where the medical transport would go to take him to his primary care doctor. I begged them to change doctors and they wouldn't. I didn't like the doctor he had, anyway. At least my primary care doctor is actively doing things to make me more comfortable along with the physicians in PM&R in the neurosciences department.

I'm trying to eat more. Unfortunately, this week I've had a nasty cold so lots of fluids and rest but not a whole lot of eating.

I am hoping that they can do something about the hypokyphosis and the neck. The L-spine is being managed with steroid shots which seem to be less and less effective. My arms AND legs ache, zap, and tingle with nerve symptoms. I'll tell you, when the upper or lower back act up (if it's not one, it's the other), it will debilitate and take your breath away...literally!

I'm not 100% convinced that all of the problems I'm having with my legs are related to this muscle disease. The reason I say that is because it's much harder to walk when I've been sitting upright for more than a half hour. The longer I sit, the worse it gets. I'm thinking there is some nerve compression going on because sometimes my left leg is worse than my right and sometimes it's both. I have a bad L5-S1 disc. When I had my facet joint injections, my left facet joint at that level was badly arthritic. There was space where there shouldn't have been and mass where there shouldn't have been. The injections were quite painful and didn't help much at all. Not worth trying again. So it's my opinion that they are just putting too much on the other "disease" and not enough on what my problems with the spine are. I wouldn't be having tingling arms and hands if there weren't some nerve compression in my neck as well. However, I do have cervical dystonia and the muscles can clamp down on the nerves, too. The neck pain is worse the older I get. It's downright nauseating at times and triggers headaches. It's in the bones and not the muscles. I can tell the difference between when my muscles are clamping down and when the bones hurt. The muscles are being taken care of with treatments.

I'm not giving up all hope. It was just a wake-up for me to see my weight so low.

Rohrer01

rohrer01
07-29-2016, 11:53 PM
Okay, I called Dr. Fogelson's office in Rochester, MN. They haven't called me because I am on a very LONG waiting list to get in to see him. The receptionist looked at what they have for me and she said that nothing was forwarded except a two year old MRI. I explained the situation I'm in and she said that might expedite my place in line. Even so, I won't be able to get an appointment until Fall! I started this in MAY. My PCP said that was a good thing in his mind because the doctor is in very high demand so he must be excellent. But with the insurance not willing to foot the whole bill (Mayo Clinic charges more than the hospital here) I'm concerned about the expense IF I'm able to get surgery there. They don't call you until they have an appointment time to offer you. I'm thinking about going back to the doctor in Madison due to the delays and the money. His office accepts my insurance payments as payment in full... Any thoughts on that?

Some good news is I gained two pounds as of last week even though I had the cold. Honestly, I think it's hydration as I turned on the central A/C. We'll see next week. I'll post updates as I hear them.

I've been following the news feeds. It seems some new people are having some difficulties. I'm so sorry for that. I hope everyone is as well as they can be.

Take care,
Rohrer01