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  1. #1
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    12-degree progression in one year

    Hi,

    There has been discussion here before about progression in adults. I got a bit of a shock today meeting again with my spine surgeon to review my recent x-rays and plan for surgery. My lumbar curve progressed in a year's time from 35 to 47 degrees. I was diagnosed at age 13/Risser 0 with 33 lumbar and 32 thoracic. I wore a boston brace for almost 2 years with less than stellar compliance the last year, until I finally just refused to wear the brace when I started high school. 3 months after I stopped wearing the brace my curves were both ~ 20 degrees. I had no x-rays for 23 years, at which time the lumbar curve was up to 35 degrees, where it stayed stable for another year. Now it has major degenerative changes, arthritis, spinal stenosis, DDD, etc. along with spondylolisthesis at L4. The doctor was quite surprised at the large progression but had no explanation. Now I am planning for reconstruction and fusion T10-pelvis, probably in the Fall.
    Gayle, age 49
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

    also mom of Torrey, 12 y/o son, 16* T, stable

  2. #2
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    Bummer Leah. Sorry about that. You're pretty young to have that much degeneration. Have you had a DEXA scan yet?

    Because we don't typically see a lot of kids in our clinic, a large percentage of the people we see are those with degenerative scoliosis and spondy. The good news is that a lot of these patients end up with T10-pelvis fusions, and we're seeing truly amazing outcomes. Is the surgeon going to do just a posterior approach, or will you also have an ALIF or XLIF?

    --Linda

  3. #3
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    Quote Originally Posted by leahdragonfly View Post
    Hi,

    There has been discussion here before about progression in adults. I got a bit of a shock today meeting again with my spine surgeon to review my recent x-rays and plan for surgery. My lumbar curve progressed in a year's time from 35 to 47 degrees. I was diagnosed at age 13/Risser 0 with 33 lumbar and 32 thoracic. I wore a boston brace for almost 2 years with less than stellar compliance the last year, until I finally just refused to wear the brace when I started high school. 3 months after I stopped wearing the brace my curves were both ~ 20 degrees. I had no x-rays for 23 years, at which time the lumbar curve was up to 35 degrees, where it stayed stable for another year. Now it has major degenerative changes, arthritis, spinal stenosis, DDD, etc. along with spondylolisthesis at L4. The doctor was quite surprised at the large progression but had no explanation. Now I am planning for reconstruction and fusion T10-pelvis, probably in the Fall.
    May I ask how old you are? I am 41 and have had about a 6* progression of both of my curves in the last two years after being stable for over 20 years. It's quite concerning to me. My doctor here doesn't want to do surgery, but I'm in so much pain I'm getting a 2nd opinion.

  4. #4
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    Your case is obviously not the paradigm. Even though you were expected to go back to the pre-brace Cobb of mid thirties after stopping brace treatment, the paradigm is that you should have avoided surgery for the rest of your life for progression at least.

    You are one of now several cases in this small sandbox who doesn't fit the present understanding.

    I think there might be some disconnect between the pediatric guys and the adult guys. I think the adult guys might have formed a different opinion about progression potential at certain Cobb angles than what the pediatric guys are telling patients simply because the pediatric guys don't follow these patients past 18 years old.

    Good luck, Gayle.
    Last edited by Pooka1; 05-12-2010 at 05:44 AM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  5. #5
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    Hi Linda,

    I had a DEXA scan 2 years ago that was normal, so that's good. Dr Hart is planning to try all posterior--he will do a TLIF at L4-5 and possibly L3-4. He said there is a chance (about 50%) that I will need a staged anterior a week later if he can't do enough safely at the low levels. It is possible that because I have very hypermobile joints, had a previous L5-S1 fusion years ago, and have always been active, I have had more degeneration--I don't know.

    Rohrer, I am 42. The main reason for surgery is unstable spondylolisthesis at L4 and lateral listhesis/slippage at L3 and L2 with symptoms of nerve compression. So really the scoliosis is the least of the reasons for the surgery, but since we are fixing for the purpose of stabilizing, he has to start higher and stabilize the entire lumbar curve. Isn't your curve high thoracic, so that is a very different situation. I am glad to hear you're getting a 2nd opinion though and hope you can find some relief.

    I also wanted to ask, how was your EDS diagnosed? Do you have symptoms besides joint hypermobility? Reason I ask, some things I have read consider EDS-hypermobility type to be the same as hypermobility syndrome, while others don't. I saw a rheumatologist who thought I did not have EDS, even though I have some of the other symptoms.
    Last edited by leahdragonfly; 05-12-2010 at 05:48 AM.
    Gayle, age 49
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

    also mom of Torrey, 12 y/o son, 16* T, stable

  6. #6
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    Okay with the hypermobility diagnosis then I think all bets are off. I think the progression paradigm only concerns AIS. Maybe Linda knows.

    If connective tissue disorders are known to respond differently to bracing then I think the long term progression potential likely doesn't match either.

    Maybe all the unusual cases are really proxies for connective tissue disorders and NOT AIS. I recently read that 30% of scoliosis cases are not AIS. Who knows.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  7. #7
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    Quote Originally Posted by Pooka1 View Post
    Okay with the hypermobility diagnosis then I think all bets are off. I think the progression paradigm only concerns AIS. Maybe Linda knows.

    If connective tissue disorders are known to respond differently to bracing then I think the long term progression potential likely doesn't match either.

    Maybe all the unusual cases are really proxies for connective tissue disorders and NOT AIS. I recently read that 30% of scoliosis cases are not AIS. Who knows.
    If my scoliosis is not AIS, then I was misdiagnosed. Maybe it is a connective tissue disorder. I believe there is a genetic test that they can do for EDS. I have an appointment in Physical Medicine tomorrow. I will certainly ask them about this.

  8. #8
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    Quote Originally Posted by rohrer01 View Post
    If my scoliosis is not AIS, then I was misdiagnosed. Maybe it is a connective tissue disorder. I believe there is a genetic test that they can do for EDS. I have an appointment in Physical Medicine tomorrow. I will certainly ask them about this.
    Actually, to my unceasing amazement, I think I understood our surgeon to say that even if my daughters' scoliosis was traced to a connective tissue disorder ("collagenous" is the term I think he used) it would STILL be considered AIS.

    Amazing.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  9. #9
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    Quote Originally Posted by leahdragonfly View Post
    Hi Linda,


    Rohrer, I am 42. The main reason for surgery is unstable spondylolisthesis at L4 and lateral listhesis/slippage at L3 and L2 with symptoms of nerve compression. So really the scoliosis is the least of the reasons for the surgery, but since we are fixing for the purpose of stabilizing, he has to start higher and stabilize the entire lumbar curve. Isn't your curve high thoracic, so that is a very different situation. I am glad to hear you're getting a 2nd opinion though and hope you can find some relief.

    I also wanted to ask, how was your EDS diagnosed? Do you have symptoms besides joint hypermobility? Reason I ask, some things I have read consider EDS-hypermobility type to be the same as hypermobility syndrome, while others don't. I saw a rheumatologist who thought I did not have EDS, even though I have some of the other symptoms.
    Leah, if that question was directed to me, I have never been diagnosed with EDS. I was told by a physiatrist that I had VERY floppy joints. I can't say with 100% certainty that the term "joint hypermobility" was used, although I thought that was what she said. It was over 10 years ago. But there was no mention of any serious condition other than my scoliosis. My daughter was evaluated for Marfan's because of her floppy joints, too. The doctor was certain she had it, but she doesn't. In fact, now that she is fully grown, she is much smaller in size than I expected, since her father was over 6' and I was 5' 8-1/2" in my glory (before I started shrinking) at age 15. She is barely 5' 5", but does have mild scoliosis.

    Yes, we have very different conditions. The title of your thread is what caught my attention about the progression of 12*. It could very well be the other problems that you are having with your spine that are causing at least some of this progression.

  10. #10
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    Quote Originally Posted by leahdragonfly View Post
    Hi Linda,

    I had a DEXA scan 2 years ago that was normal, so that's good. Dr Hart is planning to try all posterior--he will do a TLIF at L4-5 and possibly L3-4. He said there is a chance (about 50%) that I will need a staged anterior a week later if he can't do enough safely at the low levels. It is possible that because I have very hypermobile joints, had a previous L5-S1 fusion years ago, and have always been active, I have had more degeneration--I don't know.
    Sounds like a very solid plan.

  11. #11
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    Hi Gayle
    i'm sorry that you had to have surgery in the past..and now need more! once should be enuf with this stuff, but then, life isnt fair

    your back sounds kinda like mine in terms of disc disease, arthritis, stenosis, listhesis, etc...i am supposed to have side and back incisions, with minimally invasive approach, and fusion will include L1-L5, L5-S1 and T11-sacrum, with bilateral pelvic fixation...by the time they are finished

    but i have not had anything done....yet

    i suspect that disc degeneration comes after the scoli has weakened the back...of course, i know people who have bad discs without scoli... some who've gone in, had something arthroscopic done to the discs, and are out, hopping around, pain free! alas, not for us

    i hope the surgery relieves the problems you are dealing with every day...and leads to the pain free and active life you so deserve!

    jess

  12. #12
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    Hi Gayle, I'm sorry to hear about your progression....but there seem to be quite a few people here that have had significant progression in their 40's and 50's....I wonder why that is? Maybe its just the normal aging process? Anyway, I went from around 45 degree's lumbar to over 65 degrees in around 3 years....I guess once it starts to degrade it can happen quickly.

    Good luck with your surgery...its no fun but not horrible once you get past the first few days. The good thing is you'll sleep a lot and before you know it you'll be on your feet and recovering!

    Rich
    Pre-Surgery Lumbar 65 degrees
    A/P Fusion T10-Pelvis by Dr. Christopher Good
    Virginia Spine Institute, Reston, VA 3/17/10, 3/18/10
    Post-Surgery Lumbar 19 degrees, and 2" in height

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