nearly 60degs and hoping to avoid surgery

[mashkine]

Hi there!
I'm 31, have had scoliosis since I was a teenager. When I was diagnosed at 14 I already had a double curve, with over 40 in the thoracic. At the time we went for the Copes brace, which I wore religiously in high school and even a bit into college years. In retrospect I really wish I was braced with a different brace like Cheneau, because the Copes brace did not keep my spine from worsening. By the time I was out of college I had 55T, 46L, but a surgeon did not recommend surgery. I hardly thought about my back in my 20s, traveling a lot, keeping fairly active, going on hiking trips, including two-week trekking in the mountains with a heavy backpack (which may have made my lumbar worse but it was beautiful..). Over the past year or so, my low back has been giving me increasing trouble, so I went to take new x-rays and see another surgeon. My thoracic was at 57 and my lumbar at 53 - a perfect S. So the curves did not progress tremendously over the decade, despite the fact that I was doing pretty much nothing for my back. The new surgeon - he operates on adult patients, mostly with degrees of 70 and over, really surprised me by saying he still does not recommend surgery, and that he is glad that I never had it done. This partly was a relief because I dread having the operation performed - I have had nightmares and panic attacks about it - but also made me extremely confused. With all this emotional stress after seeing the doctor, my back has been acting up even more, and I am obsessed with it, noticing the little aches that I probably ignored in the past. One night I could not sleep because I felt that my leg is going numb - which it wasn't.
Are there people out there with curves like mine and trying to treat their condition in some way that is not surgery? I am ready to commit the time and money for therapy that will treat the pain symptoms (which at least in part are psychological, I think), and I would sure love to keep my curve from progressing further. If I pull this off, I am certain I could live with my scoliosis and not have the operation - the appearance does not bother me as I am perfectly centered, and I am not very self-conscious about it, maybe a little bit when I am at the beach, but that's it.
I am planning to start massage treatments, and Schroth treatments, just to try them out. I really don't want to lose hope that surgery can be avoided, especially after a surgeon advised not to have it done, but reading this forum makes me very pessimistic.

Cheers,
Maria

[jrnyc]

Maria, did the doctor say WHY it was a good thing that you
didn't have the surgery....? specifically why?
what levels were supposed to need fusing...??

jess

[jackieg412]

Hi Maria,
I think you have a great attitude. Yes do all things that may help. You have nothing to loose. Be as conservitive as you can because surgery can really change things. There are a ton of possibilities. New things are always happening and you are young yet.Kepp a watch as you are!

[Pooka1]

I really don't want to lose hope that surgery can be avoided, especially after a surgeon advised not to have it done, but reading this forum makes me very pessimistic.

Hi Maria.

I can't imagine that there is anything on this forum that would trump the opinion of an experienced orthopedic surgeon specializing in scoliosis. If you doubt his opinion, get another opinion from another experienced scoliosis guy, not an online forum of lay people. People only know their own cases and even then only on a subjective level. Only a surgeon can tell you about your case on an objective level.

You can have hope to avoid surgery because you have made it this far and you have an opinion from a surgeon that you don't need surgery now. Your are progressing at a very slow pace. We have had other adults here make it to about 50* and hang there, sometimes for decades (gin and tonic therapy). You may not progress much more or only very slowly. I am guessing that is why the opinion was you don't need surgery now but I can't know what the actual reason was.

As far as I know, surgeons refer adults to PT for pain because it has a chance of working for that purpose. You can hope it will work for your pain... that is not crazy.

Good luck.

[LindaRacine]

Hi...

I totally agree that you should try to avoid surgery if possible. You might want to check out http://www.yogaforscoliosis.com. It would be a good place to start.

Regards,
Linda

[mashkine]

Maria, did the doctor say WHY it was a good thing that you
didn't have the surgery....? specifically why?
what levels were supposed to need fusing...??

jess

I was shocked to hear it when I met him - he said, basically - you are very well aligned (i.e. pelvis/neck are centered due to the symmetry of the "S", you look great, you might have problems when you have children or when you reach 60, which is when you can have a DNA test to see whether only the thoracic can be fused while the lumbar can straighten by itself. Until then I didn't know about such technology. Until then, he said basically, throw your x-rays in the closet and lead a normal life. Due to my confusion I later called the doctor's nurse, who said that the advise was due to the risk of the operation, that they don't do it for pain relief but when the condition threatens vital organs like heart and lungs, or when the pain goes down to the legs. Most likely both my low back and the thoracic would be fused, i.e. no flexibility at all - which is no picnic...

I am very flexible now, I do Iyengar Yoga and am more flexible than the average, I would say, of any class - most scoliosis people are, as far as I know, hyperflexible, and maybe that's part of the reason for the problem. I wish the research and science would be more advanced on this disease - it seems like the surgery is so "nuts and bolts" - pretty unchanged since 50 years ago!

[mashkine]

Hi Maria.

I can't imagine that there is anything on this forum that would trump the opinion of an experienced orthopedic surgeon specializing in scoliosis. If you doubt his opinion, get another opinion from another experienced scoliosis guy, not an online forum of lay people. People only know their own cases and even then only on a subjective level. Only a surgeon can tell you about your case on an objective level.

You can have hope to avoid surgery because you have made it this far and you have an opinion from a surgeon that you don't need surgery now. Your are progressing at a very slow pace. We have had other adults here make it to about 50* and hang there, sometimes for decades (gin and tonic therapy). You may not progress much more or only very slowly. I am guessing that is why the opinion was you don't need surgery now but I can't know what the actual reason was.

As far as I know, surgeons refer adults to PT for pain because it has a chance of working for that purpose. You can hope it will work for your pain... that is not crazy.

Good luck.

A pediatric orthopedist looked at me ten years ago, but the latest doctor was technically a neurosurgeon, which maybe can explain his hesitation to jump to surgery on a relatively healthy young patient. Reading this forum I see a lot of people in their 20s who go ahead with it despite having no pain and with curves similar to mine - that always surprised me. I trust the doctor I saw after speaking with his nurse later who explained to me more in detail why surgery is not recommended in my case. A big concern right now is drastic deterioration after childbirth - I don't have kids yet, but I hope to have at least one in the next five years. I also live outside the US now, and don't have American insurance - also a big issue, obviously, because if I have surgery I would have to quit my job move to the US and start a new life, because surgery where I am is not as advanced and I wouldn't want to up the risk of complications.

[mashkine]

Hi...

I totally agree that you should try to avoid surgery if possible. You might want to check out http://www.yogaforscoliosis.com. It would be a good place to start.

Regards,
Linda

Thanks Linda. I have this woman's CD, which I didnt really like because it was too slow and rudimentary - I have been doing Iyengar yoga for a couple of years now and it does seem to help with the pain. It's just so confusing as to what works and what makes the curvature worse. I know that Schroth does not advise many of the twists and backbends common in yoga practice (I have yet to try Schroth, but I do have their book on three-dimentional treatment). It's really a shame no real studies have been done on how adults with severe curves fare in later life, and what treatments are recommended.

[Pooka1]

when you reach 60, which is when you can have a DNA test to see whether only the thoracic can be fused while the lumbar can straighten by itself. Until then I didn't know about such technology.

Are you sure you got this right? Whether or not the lumbar is structural and therefore needs to be fused is determined by bending radiographs as far as I know. Nobody has found the gene or genes for whether the lumbar in an apparent double major curve is structural. There is something called a false double major where it looks like two structural curves but the lumbar bends out and so it isn't structural. My one daughter had this and indeed was fused only through the thorax and her lumbar corrected on its own to match the corrected T curve. Not structural. There is a paper showing that all the patients in a small study who had selective T fusion of a false double were stable about 20 years out. There has also been some work on just fusing the T curve when it is known the lumbar is structural because surgeons try to avoid fusing into the lumbar. Because you are young, a surgeon might opt for this if you need surgery or only fuse part of your lumbar.

The only genetic test associated with scoliosis besides the syndromic cases like Marfans or CMT is Scoliscore to my knowledge which is a test for certain kids to see whether or not they will be above or below 40* at maturity.

I am very flexible now, I do Iyengar Yoga and am more flexible than the average, I would say, of any class - most scoliosis people are, as far as I know, hyperflexible, and maybe that's part of the reason for the problem. I wish the research and science would be more advanced on this disease - it seems like the surgery is so "nuts and bolts" - pretty unchanged since 50 years ago!

Both my daughters have some connective tissue issue that makes them hypermobile. I agree it is a fairly common trait among folks with scoliosis.

[Pooka1]

A pediatric orthopedist looked at me ten years ago, but the latest doctor was technically a neurosurgeon, which maybe can explain his hesitation to jump to surgery on a relatively healthy young patient. Reading this forum I see a lot of people in their 20s who go ahead with it despite having no pain and with curves similar to mine - that always surprised me. I trust the doctor I saw after speaking with his nurse later who explained to me more in detail why surgery is not recommended in my case. A big concern right now is drastic deterioration after childbirth - I don't have kids yet, but I hope to have at least one in the next five years. I also live outside the US now, and don't have American insurance - also a big issue, obviously, because if I have surgery I would have to quit my job move to the US and start a new life, because surgery where I am is not as advanced and I wouldn't want to up the risk of complications.

You might want to get a consult with a Scoliosis Research Society guy in addition to the neurosurgeon.

http://www.srs.org/find/

Some surgeons will operate with the thought of tying to save levels in the lumbar. But if the entire lumbar is in a structural curve then I guess the only indication to operate would be unremitting nerve pain or other pain that is not amenable to PT. Only an experienced orthopedic surgeon specializing in scoliosis can say. They are the only real game in town.

[mashkine]

Are you sure you got this right? Whether or not the lumbar is structural and therefore needs to be fused is determined by bending radiographs as far as I know. Nobody has found the gene or genes for whether the lumbar in an apparent double major curve is structural. There is something called a false double major where it looks like two structural curves but the lumbar bends out and so it isn't structural. My one daughter had this and indeed was fused only through the thorax and her lumbar corrected on its own to match the corrected T curve. Not structural. .

I'm pretty sure he meant DNA as he was talking about a saliva swab. But since I'm not getting surgery right now, I didn't really press him on it. I did bending x-rays a long time ago, when I was still in school, and I don't remember what they show. That is pretty cool that the lumbar could correct by itself in your daughter! I doubt that it would in an adult like myself though, and being fused to the pelvis scares me more than anything - exponentially more limiting!

The doc is not on the srs list you gave, but I know he does scoliosis surgery, and I have no doubt in his credentials due to his place of work and the way he was recommended to me. I notice the SRS corporate supporters are all companies making surgical equipment. Not to get into any can of worms, but I'd prefer a more distanced approach at a point where I am not sure whether surgery is the answer, rather than see a trigger-happy ortho surgeon. When I do feel like I'm ready for surgery, I will pick the surgeon from the list. They might be the only game in town for surgery, but they might also be a bit more willing to do it, even when it is not 100 percent needed.

[Pooka1]

I'm pretty sure he meant DNA as he was talking about a saliva swab. But since I'm not getting surgery right now, I didn't really press him on it.

That sounds like Scoliscore which is only given to young kids to determine if they will be above or below 40* at maturity. The answer with you is known. It might be he is asking you to submit DNA to help calibrate the test since your outcome is known. No need to do the test. This test has nothing to do with whether or not a lumbar curve is structural.

I did bending x-rays a long time ago, when I was still in school, and I don't remember what they show. That is pretty cool that the lumbar could correct by itself in your daughter! I doubt that it would in an adult like myself though, and being fused to the pelvis scares me more than anything - exponentially more limiting!

In both my daughters, the lumbar corrected itself to match the corrected T curve. Two-of-Two's T curve was corrected to ~25* and that's what the lumbar went to. Her twin, One-of-Two's T curve was corrected to single digits and her lumbar corrected itself to single digits. It is my understanding the lumbar does this in adults also if the lumbar is not structural and if the spine has not stiffened.

The doc is not on the srs list you gave, but I know he does scoliosis surgery, and I have no doubt in his credentials due to his place of work and the way he was recommended to me. I notice the SRS corporate supporters are all companies making surgical equipment. Not to get into any can of worms, but I'd prefer a more distanced approach at a point where I am not sure whether surgery is the answer, rather than see a trigger-happy ortho surgeon. When I do feel like I'm ready for surgery, I will pick the surgeon from the list. They might be the only game in town for surgery, but they might also be a bit more willing to do it, even when it is not 100 percent needed.

What is the evidence that "trigger happy" ortho surgeons exist? Maybe it is pure mythology.

[mashkine]

What is the evidence that "trigger happy" ortho surgeons exist? Maybe it is pure mythology.

Logically, surgeons like to increase the number of surgeries performed - that does make them more experienced and attractive doctors. But even a successful fusion is a fusion, which the patient, not the doctor, has to live with for the rest of their life.
I'm sure the vast majority of surgeons in the US are ethical and cautious, but right now I work in a country where fusion is also performed, and websites for some respected scoliosis treatment centers (performing the same type of fusion as in the US) basically say that you must operate once you are past 40 degrees, otherwise you won't live to be 40. I'm not joking! So the tendency to be trigger-happy is out there, hopefully in the US there are enough checks and balances of the medical community that prevent such misinformation.
Anyway, I don't want this to turn into a long argument about surgical ethics, it's not why I posted in the first place. Everyone who responded has been incredibly helpful, thank you.

[jrnyc]

i do not know what they do in whatever country you are living
in right now....
i do know that in the States, i have never seen a "trigger happy"
surgeon in the field of scoliosis....
i have curves of 42T and 70L....but the decision, as in
every patient, is MINE....and MINE ALONE!!
no surgeon ever tried to pressure me....
they have lots of patients...they do not need to advertise
or talk patients into surgery....
i am not sure where you got that idea...
i see forum members trying to give you the advice you
requested, but your posts sound...resistant and almost
argumentative...
i did not read anyone saying you must have the surgery....
they seem to be trying to give you their experiences....
and perhaps save you from some grief...

i am not trying to sound harsh...
just telling you the way your posts are reading to me...
and no surgeon on the SRS list tried to talk me into any
particular materials in the surgery they suggested to me.
i thought you requested advice and benefit of others' experience?
jess

[mashkine]

i do not know what they do in whatever country you are living
in right now....
i do know that in the States, i have never seen a "trigger happy"
surgeon in the field of scoliosis....
i have curves of 42T and 70L....but the decision, as in
every patient, is MINE....and MINE ALONE!!
no surgeon ever tried to pressure me....
they have lots of patients...they do not need to advertise
or talk patients into surgery....
i am not sure where you got that idea...
i see forum members trying to give you the advice you
requested, but your posts sound...resistant and almost
argumentative...
i did not read anyone saying you must have the surgery....
they seem to be trying to give you their experiences....
and perhaps save you from some grief...

i am not trying to sound harsh...
just telling you the way your posts are reading to me...
and no surgeon on the SRS list tried to talk me into any
particular materials in the surgery they suggested to me.
i thought you requested advice and benefit of others' experience?

I expressed my gratitude to everyone who replied. Sorry if you were offended by something I wrote. How do you cope with your 70 degrees? Do you do exercises or massage, when your back bothers you?