I have some imaging CD's

[rohrer01]

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]

Most discs come with the software to view the images.

[Pooka1]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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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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]

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]

rohrer01,

I think for disk wedging or really bulging to cause pain and spinal nerve root pinching it’d have to be significant. Yours don’t 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 don’t have major pain issues, or rather paint doesn’t 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]

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]

rohrer01,

I think for disk wedging or really bulging to cause pain and spinal nerve root pinching it’d have to be significant. Yours don’t 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 don’t have major pain issues, or rather paint doesn’t 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]

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]

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]

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]

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]

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]

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]

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]

You're probably right.

[rohrer01]

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]

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]

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]

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]

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]

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]

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]

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.

It’s 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 don’t match the imaging.

[rohrer01]

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]

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.

I’m sure you will report your success.

Ed

[rohrer01]

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.

I’m 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]

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]

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]

Supposedly high doses of magnesium are supposed to help with headaches...???

[jrnyc]

never heard of that....
be careful...i've only heard of it for stomach problems...
(to solve constipation)

[rohrer01]

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]

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]

Wow that's amazing news! Very happy for you!

[rohrer01]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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