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Scheuermann's Disease without Kyphosis Causing Excruciating Pain in 17 yr. Old Female

I'm a 17 year old girl with incredible pain in my thoracic spine. It is by far the worst when I sit, and I experience no pain when I'm moving (even If I bend over).  I'm extremely active and I play volleyball around 3 hours every day and I plan to play in college.  My hamstrings are not tight, most doctors are amazed at my flexibility, and have suggested I'm hyperflexible.  

I have tried a medrol dose pack, muscle relexers, a tens unit, a back brace, 7 months of physical therapy three times a week which included electrical stimulation, ultrasound, massage, joint mobes, strength excersizes, stretching, traction, and yoga moves.  I have also had a lumbar epidural, a thoracic epidural, and 5 trigger point injections.  I have tried Lyrica, and Lidoderm patches as well as numerous NSAIDS, a low dose anti-depressant, narcotic pain relievers, and non-narcotic pain relievers.  I'm currently doing accupuncture, seeing a chiropractor, a doctor for pain management, a doctor at the Rehabilitation Institute of Chicago, and I'm mdoing biofeedback.  I think I got it all :)

I've been examined by the Chronic Pain Management Center at the Rehab Inst. of Chicago and the psychologist there determined I'm not depressed at all, I have an open mind about my pain and treatment, etc. - I'm a normal high school girl except for my back.  

All of this started during a couple of weeks about a year ago at the start of my junior year in high school.  No injury, nothing changed, just all the sudden, I was unable to sit without unbareable pain.  

I had an MRI and X-Ray which revealed the vertebrae in my thoracic were wedge-shaped, and the edges were wavy.  I had three bulging discs below T3, T5, and T8.  My discs were degenerated.  I also had several Schmorl nodes.  The vertebrae with the worst deformities were T2-T10.  Also the slightest amount of scoliosis was visible.  All the doctors I have seen agree that I have a variant of Scheuermann's Disease, and degenerative disc disease.  The reason that it is a variant is I have no kyphosis, none, ever. A posterolateral fusion from T2-T10 was suggested  by one doctor but dejected by all the others because they feel it will not provide sufficient relief, and limit my motion so much that I can't play volleyball which currently is the one time I'm not in pain.  

So basically, my question is what other possible options are out there, if any?
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Avatar universal
hi my name is chico im a 32yr old male whos been living with scheuermanns disease since i was 14 but wasnt diagnosed until i was 25 and by that time i was in unbearable pain daily through out my whole back, plus my spine has compressed and shifted so much now my left hip sticks out more than the right and causes alot of pain and as well as my left knee is always sore and swollen. It was very fortinuate that they caught it earlier than they did for me so you are able to delay the full effects of this disease all the pain meds dont work for me so im not on any pain medication and it effects every aspect of my life. I wish you all the luck in your future and hopefully your doctors are better than mine and can come to an answer thatll relieve your pain and keep exercising and playing your sports as it will help delay the affects and hopefuly relieve some pain too.
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Avatar universal
Surfed across your post today. I have scheuermann's i'm 25 now but i had the fusion (8 vertebrae) and titanium rods and all that (14 hour surgery) when i was 17 and still in high school and a volleyball/basketball player like yourself.  90% of your story is identical to mine, so i understand where you are coming from. I had to explain to teachers through hs and college why i couldn't sit more than 10 minutes. You are lucky you don't have pain while moving. With time, that could change though. and surgery won't necessarily fix the pain...it could, but certainly it isnt a sure thing.  If you dont have kyphosis to go with Scheuermanns ie wedge shaped vertabrae that seems very odd. Why? Because if you stack normal vertabae on top of each other, they are rectangular and generally (mental picture here) stack straight up and down for normal folks. Scheurmans causes those discs to jelly and become wedge shaped like pizza slices. Stack those wedges on top of each other and you will get a curve ie kyphosis the degree of your curve will hinge on how steep the slope of the wedge is. So maybe your discs just haven't degenerated enough to have a abnormal kypotic curve. by nature everyone is kyphotic to some degree, so the question is what is yours? You need a doc experienced with scheurmanns to take your xray and draw/calculate your curve. Then over the years you can re draw it and see if its getting worse. Right now you aren't experiencing cosmetic issue due to the disease, only pain.  That is great, especially in hs. You didn't comment on your posture, but i'd assume its good if you say you have no kyphosis. . In time, as degeneration continues, you may start to see the degree of your nature kyphotic curve worsen to a point that it becomes an issue.
As for your options, it sounds like you you know a lot already. My surgery was done by the best of the best, and my pain hasn't significant decreased. I have personally come to believe people with this disease prone to serious pain, whether they have surgery or not,still have serious pain.  I'm sure there are exceptions though. If you are serious about playing volleyball in college then you should really talk with a doctor that knows his stuff. Surgery will limit volleyball as recovery takes quite a bit of time you and you only get so many years in hs...though if you're gonna do it doing it while you're young is best. I played volleyball and basketball senior year after my surgery and felt like i wasn't limited at all afterwards and i know other pro athletes like Ken Shamrock have not been limited from spinal fusion after proper recovery but i wont speculate on that. You have to ask a surgeon that specializes in scheurmanns fusions wether or not your pain will be affects for the better or worse, as that seems to be the key to all this. and i dont want to lead you one way or another on that specific issue.  Other options besides surgery are massage, pain killers(sounds like you tried a lot, out here i use medical marijuana for pain in works nicely in combination with other therapies), physical therapy, yoga or combinations of all or none.  Wether you have surgery or not, the real key is learning early that physical therapy is generally away of life with this disease, both if you have the surgery or not.  I don't mean running, thats hard on the back, i mean specifically designed pt. Strengthening your back and core will ultimately help in the long run more than just about anything i've been told and have come to believe. but realistically a lot of us with scheurmanns have and will always have pain so its just about treating and learning to deal with it.
If you are super serious about your volleyball maybe you want to consult the doc i used in CA he is one of the leading spinal experts in the world hes spinal consultant for numerous professional and collegiate sports teams including:
Los Angeles Dodgers Baseball Team
The Los Angeles Lakers Basketball Team
The Los Angeles Kings Hockey Team
The California Angeles Baseball Team
The Mighty Ducks Hockey Team
Last time i was in i ran into Syllyvestor Stallone getting checked by him.  His website has a press section its littered with famous althetes that hes treated, check it out if you want, hes basically the preeminent guy in the nation for athletes with spine issues pro and recreational. Hes written a bunch of books and stuff...http://www.watkinsspine.com/doctors-1.html
anymore questions you can ask me i'll try to check back here.

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Avatar universal
I also play volleyball and have been having back pain since the start of my volleyball season four months ago.  It also came out of nowhere, but my pain is there whatever I do.  The only way it is relieved is if I lay completely flat, no pillow.  I do have slight scoliosis.  I have not been to a doctor yet because It has been managable until lately where It has gotten alot worse.  In class I can't sit still anymore, I have to switch positions every five minutes, It is really annoying!  anyways, I hope you find relief!
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