I have some imaging CD's

[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.

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.

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.

[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]

Phase I drug withdrawal complete.

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]

March 2011 radiographs - I finally got around to getting them!

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.

[ATTACH]650[/ATTACH]

[ATTACH]651[/ATTACH]

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.