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Jimbo
10-12-2008, 09:24 PM
I have noticed that many people have a lot worse curve than I do, mine is at around 40 lumbar and about 40 thoracic ( I finally had standing xrays and the curve is a lot worse, especially the thoracic). Some people have 50 -90 degree curves and seem to be dealing with the pain better than I am, why is it that I am in so much pain and discomfort?

On another note, when I got my standing xrays the thoracic seemed so much longer and curved, it looks scary. It made me very nervous :( I can understand now why my upper torso looks quite deformed.

Does anybody know if I get an anterior lumbar fusion, would it reduce the thoracic deformity and at least make my upper torso look less twisted and reduce my rib hump?

God, it really does drive one crazy not knowing whether their scoliosis is going to progress, especially if you are border line for surgery in the first place. Thanks guys :)

Writer
10-13-2008, 01:24 PM
There seem to be an awful lot of variations of scoliotic spine and ribcage configuration. You're right, it is bizarre that some people with severe deformity have little or no pain and others with mild to moderate deformity have severe pain.

There are a number of different causes of scoliosis-related pain and these have not been sorted out and defined yet in the clinical literature. But many, perhaps most, are treatable if the practitioner really knows what he or she is doing.

There were two sources of my pain. It got so I could hardly walk a block without bending over to stretch my back and legs. Every morning I woke up with a bachache. Several chiropractors and doctors failed to notice my tight hamstrings, but a Schroth PT did and the problem was fixed instantly and permanently. I just do daily hamstring stretches. Poof, no more back pain.

Ergonomically-related pain is another. Your posture in your chair or car may be causing discomfort. The same PT fixed my sitting-posture discomfort in a single visit by adjusting my swivel chair and desk height. A good physiotherapist ought to be able to teach you to sit and stand so as to minimize pain.

Have you contacted Sabine Kehoe in Toowoomba? She's the only Schroth-trained PT I know about in Australia. I'd try the PT route before resorting to surgery, as the likelihood of reducing or eliminating pain via PT in a relatively brief period is quite good. Reducing the curves themselves would take a lot longer, of course.

Jimbo
10-13-2008, 07:55 PM
Shroth method, all fine if it helps with the pain for a while, but what about the accelerated disk degeneration and wear and tear on your spine from the scoliosis. How is the shroth method ever going to address that issue. I came from my physio today and he told me the way my spine is now, by the time i am 50 I will have the problems of an 80 years old, and I am fit. I have had to wwithdraw from my nursing degree because of my pain and have missed many days at work and now cant pay for my insurance to get further treatment. So just the shroth method aint gonna work for me, I need a god damn miracle if I am going to make it through this twisted nightmare of a life

Jimbo
10-13-2008, 07:58 PM
I dont know how much more if this i can take before something gives, i have nothing left

txmarinemom
10-13-2008, 08:01 PM
Jimbo, I hate to hear what you're going through.

Some people are best left ignored. He doesn't get it, and it's not worth upsetting you further. The 2 who push Schroth on here will use any chance possible to hawk "the Method".

It's unfortunate.

Regards,
Pam

loves to skate
10-13-2008, 09:10 PM
Hi Jimbo,

All I know about pain is that some people have a higher tolerance for it than others. I am so sorry that you are in so much pain. My hamstrings were not tight and I had a great deal of sciatic pain. Exercise and stretching are all good but are not going to correct the scoliosis pain if you have DDD. My heart goes out to you. Sally

Ginger W.
10-13-2008, 10:37 PM
Dear Jimbo,

I exercised my guts out, thinking my willpower would overcome my scoliosis. I used a lot of the moves in Pilates for Fragile Backs (with a foreword from Dr. Boachie, the current president of the Scoliosis Research Society). However, I my curves continued to progress, even though the pain decreased.

There are many competent doctors who will accept Medicaid if you need help to finance your surgery.

discombobulated
10-14-2008, 12:17 AM
Jimbo,

I'm so sorry you're going through so much right now. There's no reason that's been pinpointed for sure as to why some people experience worse pain than others, for whatever reason the pain is there. I can tell you, though, that with 2 40 deg. curves, your pain is not uncommon, & you are NOT alone with this. There are some theories that people who experience high levels of pain may have greater amounts of the neurotransmitters that signal to the brain that the body is in pain...it is amazing how different we all are!

I would really suggest you see a surgeon who specialises in scoliosis. Just going for an appointment does not commit you to surgery, but at least you will know some options. If you have a double curve, I would think it might come down to having both regions fused, unless there's clear evidence that fusing your lumbar region alone would alleviate your thoracic curve. I'm not sure what kind of correction you'd get from having only the lumbar spine fused, but I know that when all the spine's scoliosis curves are fused, the surgeon straightens the whole spine as much as possible as well as untwisting it (the spine twisting is another thing that causes pain + causes the rib hump). A successful surgery would most likely alleviate your pain & if significant de-rotation is achieved, it would also lessen your rib hump.

There is a procedure called a thoracotomy, where the surgeon removes parts of one or more ribs, which can further reduce the rib hump. However, some surgeons are reluctant to do them since this reduces the chest cavity space for your lungs, & also it is generally cosmetic, rather than medically-necessitated.

I really hope you find the answer to your pain...you will make it through this.

Take care, & please keep posting :)

Writer
10-14-2008, 01:38 AM
Jimbo,

I really would contact Sabine. It won't cost anything to ring her up and get her opinion. You may be quite surprised at how much an experienced Schroth practitioner can accomplish.

Schroth often does a quick job on pain. Other goals are to arrest abnormal curve progression, ideally reverse the curves, and increase vital capacity (= lungs). Reverse the curves and you will mitigate the disc degeneration. That part takes weeks or months, sometimes years, and success depends in large part on patient compliance (doing the exercises regularly and correctly).

This is not voodoo. It's partly a matter of correcting faulty posture that contributes to asymmetric loading of your spine. I'm not going to risk making a fool of myself here by recommending something that has not proven itself thoroughly. It is a very logical and comprehensible method of derotating and elongating the spine. The main Schroth clinic in Germany treats a couple thousand patients a year -- most referred by orthopedists. Sabine learned the method in Germany, probably at that same clinic.

http://www.skoliose.com/Html/Englisch.htm

carolad
10-14-2008, 03:31 AM
Sorry to hear about the pain you are in - I know how draining chronic pain can be...

I am a great advocate of the Alexander Technique - this will help your posture and will eliminate any additional stress on your spine. It will not cure your disc problems, but by improving your posture, it will ensure that you don't put unnecessary pressure on the discs and so cause more pain.

I also found AT very good at making me feel back in control of my life again - I was fed up being a 'patient', being a passive recipient of treatment by chiros, physios, doctors - at least this is something you can do for yourself, and I found this helped me cope better with life in general.

It may not work for everyone, but its surely worth trying....

Jimbo
10-14-2008, 06:07 AM
Thanks to you all. It just gets very frustrating sometimes. I am going to see Dr Andrew Cree in Sydney for a second opinion, I think most people think second opinions are worthwhile. I like Dr Gray though, and I trust his judgement. I just need to get more fit and keep with the physio for another 6 months and if that doesnt work, then I might consider getting the surgery.
I hate that feeling on the concave part of my lumbar curve where the muscle is, such an insidious pain. Also that feeling like someone is sitting on your shoulders, that collapsing feeling, it is quite hard to deal with.


I also feel very self conscious about my body image. I think I am to critical of my body as my family and friends say they don't notice any deformity, but I can. When I am training in the hospital as a nurse I am always wondering if other medical staff can spot my deformity, I think I need to see a therapist aswell. I really want to become an RN, I just hope i can do it with this back of mine.

Oh one other thing, my physio today, after his jaw hit the floor lookin at my xrays told me that by the time I am 50, I will have the bones and pain of an 80 year old, especially in my neck. That made me so upset :( Being a male who has tolerated alot in his life, that nearly brought a tear to my eye. I hope I dont end up deformed and unable to function, it scares me so much. I am tired after today and wish you all a goodnight.

discombobulated
10-14-2008, 06:41 AM
Jimbo, I really feel for you. Nobody wants to hear such a glum pronouncement. And I can totally relate to your lumbar pain & shoulder/neck troubles. I'm so hoping that my surgery soon will help with this, & I hope that whatever path you follow will bring you relief, too.

Anyway, I just wanted to pass on that I know of 2 nurses who have had spinal fusions for scoliosis. I'm not sure of the levels they had fused, but I know one had a fairly extensive fusion. Once you're all healed up & your surgeon has given you full activity clearance (I think about 12 months), you will be able to resume almost all, if not all, of your prior & desired activities. In Aussie hospitals, there's a lifting weight limit & most work like helping patients shift or get in & out of bed is done either by orderlies or by two nurses together. While a lumbar fusion will limit your mobility a little, you can still bend from the hips & with any unfused vertebra - after a while, you'll hardly even notice that you're moving differently than you used to :)

I can only offer you my experience, but I found that the chronic pain & exhaustion from dealing with the pain is impeding my studies & life in general much more than a somewhat rigid spine after surgery. But only you can decide what you need to do for you.

It sounds like you're pretty down on how you feel about your body...I think when we get to a place when we can only focus on the "deformity", it's time we trust the judgment of the people we love. Most people are far too caught up in their own lives to even notice a person's scoliosis, & even if they think, "hey, that guy's shoulders are a little uneven"....well, what's that matter?? I don't mean to sound insensitive, but if a person's more concerned with your spine being curved than they are with who you are & what you do with your life...to be honest, I believe that type of person is not who you need in your life, pulling you down. You deserve better than that!

If you feel like some therapy could help you get on top of feeling so badly about yourself, that's a great option to check out. Please know that there are many different types of psychological help out there, from traditional counselling to sessions that help you change the way you think about your situation & react to them. And if you decide therapy might be useful, don't give up if you start with a therapist who you don't feel comfortable with - every therapist & every client is really different in personality & expectations, & it can be a matter of finding the right "fit".

Anyhow, I'm really sorry to ramble on, Jimbo. I really wish the best for you, hope whatever path/s you follow, you find some relief.

Please don't give up. Take care.

Jimbo
10-14-2008, 11:19 PM
Thankyou discombobulated, your words bring me some peace :) and much needed hope.