What should I do?

[amae28]

Ok... so I am wondering how normal (or abnormal) my curve progression has been. I was diagnosed with a double curve at age 14 (8th grade), and my measurements were 25 degrees thoracic and 23 degrees lumbar. I was basically done growing (I think I was a risser 4) at the time, but I didn't begin my period for another two years. So, I was not braced, and I just have had x-rays taken every 6 months to now a year between. Currently, my curves measure 42T, 38L... and it seems like every time I have gone to see my doctor they have gotten worse. Just this last year they went from 33T, 27L to what they are now. So what am I supposed to think of this? I am going to go see an adult surgeon (as the only doctor I have been seeing up to now is my pediatric dr) the beginning of January. I have pain in my back often but still remain fairly active and exercise regularly.

I don't want to just jump on the surgery bandwagon, but i am afraid my scoliosis is just going to get worse- and if I wait until I am older I a) won't get as good of correction, b) won't have as easy a recovery, and c) will be in the midst of medical school and it would be a terrible time to have anything done.

Suggestions? Similar Experience?

-Abbie

[LindaRacine]

Hi Abbie...

I think that some people's curves are going to worsen, no matter what.

You don't say how old your age, but I suspect you have some time to figure out what to do, so I wouldn't encourage you to make the surgery decision any time soon. I think you should address the pain issue first. See if someone can figure out exactly why you have pain, and see if something like injections or other non-surgical treatment will help. Be sure that you see a scoliosis specialist every year or two, and try to set appointments for the same time of day, as measurements can be significantly different from morning to evening.

If it turns out that your curves continue to worsen, you may eventually decide that surgery is your best option. But, hopefully by then, you'll have at least tried other options.

Regards,
Linda

[amae28]

Hi Linda,

I am 19 years old. I have been seeking out help for the pain issue for a couple of years now. I have some degenerative disks (diagnosed from an MRI), which I got physical therapy for a couple of times, and they have seemed to resolve themselves for now. The major thing though is that my back hurts on the right side right next to my thoracic spine. My pain dr said that it might be costochondritis, and after basically living on ibprofen (sp?), I now have a pain med called Feldene. It helps, but makes me so tired and out of it that I don't take it unless I am miserable. My left hand and foot also are buzzing/numb all the time. I have gotten 6 cortizone shots, the first of which was not guided under floroscopy and landed me in the hospital overnight because of a collapsed lung from the needle. The rest didn't help at all (I don't know why I kept getting them), they actually made my back hurt worse than it did without them. I also have a TENs unit, have tried the yoga for scoliosis video, and refuse to go to a chiropractor. I feel as if I am running out of options.

-Abbie

[LindaRacine]

Hi Abbie...

It does sound like you've tried a lot. Maybe it's time to talk to a few scoliosis specialists to get multiple opinions. You can find a list of specialists here:

http://www.srs.org/directory/directory.asp

Regards,
Linda

[amae28]

I am going to go see Dr. Mark Bernhardt (Leawood, KS) January 6th. Hopefully he will give me some sort of straight-forward answer. Dr. Nigel Price whom I have been seeing up to know is a pediatric dr, and wasn't comfortable telling me what to do and referred me to Dr. Bernhardt who does more surgery on scoliosis patients with more adult related issues (pain, gradual progression but not overly horrible curves, like mine).

If anyone has any similar stories please let me know I would like to hear from you.

-Abbie

[gerbo]

i'd consider a flexible brace like the the spinecor; the support which it provides might stop things getting worse, and help with the pain. I do not know of evidence of its use in adults, but knowing what it can do in younger people there seems to be a logic in trying it in "grown-ups" as well

[amae28]

SpineCor seems too good to be true, and still being on my parent's insurance, my mom doesn't think spinecor is ligit... idk, i live in Kansas City, Kansas... so there aren't any spinecor specialists around here. I'm less skeptical about it than she is, but I can't imagine a brace helping be now at age 19. I have been done growing for a while.

Abbie

[gerbo]

nothing is going to structurally improve your scoliosis at this stage and any potentially beneficial treatment is bound to be based on improving posture, muscular strength, increasing awareness of your body etc. To me it would appear that the spinecor would help you to maintain/ improve your posture and support your back, and in that way should be beneficial in at least preventing deterioration and symptomcontrol. however, i have no experience with this whatsoever. Still, worth considering at least.....