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Thread: What's the prognosis for untreated lumbar scoliosis?

  1. #1
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    What's the prognosis for untreated lumbar scoliosis?

    Hi everyone,

    I am having trouble finding research about the natural history of lumbar scoliosis. There seems to be a lot of info. saying that thoracic curves can lead to heart/lung problems if allowed to progress to 90+ degrees. But what happens with lumbar curves? Does anyone know of any studies on this? Linda?

    Given the complexities of lumbar surgery and the strong likelihood of post-surgical pain, as well as the possible need for follow-up surgery, it would be nice to know if there is some research supporting surgery in the lumbar spine.

    Here's what I know:
    Chances for chronic post-surgical lower back pain when fused to L4 or L5: 70-80%
    Chances for need for additional surgery: 26% (varies somewhat by study)

    Here's what I don't know:
    If you just let your lumbar curve go and it gets to 100+ degrees, is the problem mainly cosmetic? What about 125 degrees?
    Yes, you have pain, but you have pain anyway from surgery and the stress it puts on your lower back. Which is worse?
    Are there vital organ complications if it gets that big?

    One doctor I saw said he sees "lots of little old ladies with very significant lower back curves who come in, get their pain epidural, and basically get along just fine."

    Any references would be much appreciated!

    Thanks,
    Evelyn
    age 44
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke, T4 to S1 with pelvic fixation
    Not "confused" anymore, but don't know how to change my username.

  2. #2
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    Quote Originally Posted by Confusedmom View Post

    Here's what I know:
    Chances for chronic post-surgical lower back pain when fused to L4 or L5: 70-80%
    Chances for need for additional surgery: 26% (varies somewhat by study)
    What a minute. Did you get those from the same source? Is the first one counting folks with flatback?

    I would think the bulk of pain down the road with the new instrumentation is due to adjacent level disease wherein the fix is to extend the fusion. If the bulk of pain down the road is NOT that then surgery is not the answer for lumbar scoliosis which I believe it is.

    I am very looking forward to Linda's comments on this. I don't think you would see (m)any lumbar fusions if most pain didn't resolve or wasn't in principle resolvable for most people via surgery.
    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."

  3. #3
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    Quote Originally Posted by Confusedmom View Post
    Hi everyone,

    I am having trouble finding research about the natural history of lumbar scoliosis. There seems to be a lot of info. saying that thoracic curves can lead to heart/lung problems if allowed to progress to 90+ degrees. But what happens with lumbar curves? Does anyone know of any studies on this? Linda?

    Given the complexities of lumbar surgery and the strong likelihood of post-surgical pain, as well as the possible need for follow-up surgery, it would be nice to know if there is some research supporting surgery in the lumbar spine.

    Here's what I know:
    Chances for chronic post-surgical lower back pain when fused to L4 or L5: 70-80%
    Chances for need for additional surgery: 26% (varies somewhat by study)

    Here's what I don't know:
    If you just let your lumbar curve go and it gets to 100+ degrees, is the problem mainly cosmetic? What about 125 degrees?
    Yes, you have pain, but you have pain anyway from surgery and the stress it puts on your lower back. Which is worse?
    Are there vital organ complications if it gets that big?

    One doctor I saw said he sees "lots of little old ladies with very significant lower back curves who come in, get their pain epidural, and basically get along just fine."

    Any references would be much appreciated!

    Thanks,
    Evelyn
    Hi Evelyn...

    I agree with the doctor you quoted (although I'm not a medical professional). I have been trying for about a year, to put together a study of the natural history of untreated curves. Unfortunately, I've only been able to find about 5 people who had a packet of xrays that spanned at least 10-15 years. I can tell you that, anecdotally, the only issues I've seen from large lumbar curves is deformity and pain. Degeneration seems to go hand-in-hand with lumbar curves, so it seems relatively rare that someone with a large lumbar doesn't have pain.

    Having just gotten home from a spine conference, I can tell you that the medical community is moving toward "less is more" in terms of scoliosis surgery in "older" adults. One of the surgeons I work for would generally not even offer surgery to an adult with a large lumbar curve unless there was evidence of rapid progression of the curve, instability, and/or radicular pain. And, when he does operate on this type of patient, he often fuses far fewer segments than what would have been done in the past (usually 3-4). These patients are recovering remarkably quickly.

    So, with all that said, I would personally (as an "older" adult) think very long and hard about having scoliosis surgery with limited pain.

    Regards,
    Linda

  4. #4
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    [QUOTE=LindaRacine;100577]

    One of the surgeons I work for would generally not even offer surgery to an adult with a large lumbar curve unless there was evidence of rapid progression of the curve, instability, and/or radicular pain. And, when he does operate on this type of patient, he often fuses far fewer segments than what would have been done in the past (usually 3-4). These patients are recovering remarkably quickly.


    Linda,

    This is very interesting...I am curious to know, if they are just fusing 3-4 segments, is that focusing on the levels that are at the apex of the curve? And what is the age range for "older"?--because if they just do the central part of the curve, what happens to the adjacent levels (or levels above) as years go by and degeneration continues?

    Thanks,
    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

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    Quote Originally Posted by leahdragonfly View Post
    Linda,

    This is very interesting...I am curious to know, if they are just fusing 3-4 segments, is that focusing on the levels that are at the apex of the curve? And what is the age range for "older"?--because if they just do the central part of the curve, what happens to the adjacent levels (or levels above) as years go by and degeneration continues?

    Thanks,
    Hi Gayle...

    Actually, he does the fractional curve below the main curve, usually at L4 or L5 to S1. And, this small curve is almost always the source of most of the back and leg pain in degenerative scoliosis. We don't yet know what will happen to the main curve(s), but in the short-term, the results are pretty phenomenal.

    This surgeon has never mentioned an age, but he's typically doing this on 70 year old women.

    --Linda
    Last edited by LindaRacine; 06-05-2010 at 09:38 PM.

  6. #6
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    Linda,

    Thank you once again for a very thoughtful response.

    Would 38 be an "older adult" in terms of scoliosis surgery? Just trying to put your comments in the context of my situation. And also what would you consider rapidly progressing? I've gone from 26* in 1988 to 68* now--just under 2 degrees per year.

    Please do let me know if you come across any studies of the natural history of lumbar curves. I will be asking the other surgeons I'm meeting with, as well. If I find any studies, I'll post them here.

    Answering a question you asked a week or two ago, my doc did say again this past week that he would expect severe lumbar curves to lead to problems with lower organs, kidneys, etc., but he could not cite a study. I'm not sure if it's because it's just speculation or it just hasn't been studied.

    Sharon, the first stat (70-80% have lower back pain), came from my doctor, but I have seen it elsewhere. And, yes, I think it's mostly from adjacent disc degeneration. The second stat about 26% need revision surgery came from a study that Linda posted a link to recently. That's for all adult scoli patients, not just lumbar.

    Evelyn
    age 44
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke, T4 to S1 with pelvic fixation
    Not "confused" anymore, but don't know how to change my username.

  7. #7
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    Quote Originally Posted by Confusedmom View Post
    Linda,

    Thank you once again for a very thoughtful response.

    Would 38 be an "older adult" in terms of scoliosis surgery? Just trying to put your comments in the context of my situation. And also what would you consider rapidly progressing? I've gone from 26* in 1988 to 68* now--just under 2 degrees per year.

    Please do let me know if you come across any studies of the natural history of lumbar curves. I will be asking the other surgeons I'm meeting with, as well. If I find any studies, I'll post them here.

    Answering a question you asked a week or two ago, my doc did say again this past week that he would expect severe lumbar curves to lead to problems with lower organs, kidneys, etc., but he could not cite a study. I'm not sure if it's because it's just speculation or it just hasn't been studied.

    Sharon, the first stat (70-80% have lower back pain), came from my doctor, but I have seen it elsewhere. And, yes, I think it's mostly from adjacent disc degeneration. The second stat about 26% need revision surgery came from a study that Linda posted a link to recently. That's for all adult scoli patients, not just lumbar.

    Evelyn
    Hi Evelyn...

    Since most of our patients are a lot older, we haven't talked about the age issue. I'll try to get an opinion about if the treatment would be recommended for someone on the other side of middle age.

    Here's a Google search on the natural history of untreated scoliosis:

    Natural History of Untreated Scoliosis

    --Linda

  8. #8
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    Evelyn,

    It's a really tough decision, isn't it? I, like you, have had documented progression in my curve as an adult. My curve has increased about 25 degrees in 15 years (from 45 to 70). What I struggle with is the likelihood of continued progression. I ponder "what if the progression of my curve were to stop" or "what if the progression were to slow down or stop when it got to 80 degrees"? If I could know that either of those scenarios would come true, I would most certainly not have surgery.

    What I have been told by both Dr. Lenke and Dr. Boachie is that it is likely that my curve will continue to progress at about the same pace that it has over these past 15 years (1-2 degrees per year). If that were the case, my curve would be about 95 degrees when I reach the age of 60.

    I would be very interested in any research about rates of curve progression if anyone has seen any. For example, has anyone seen research on the rate of progression slowing or stopping once a curve reaches a certain size?

    Thanks!
    Kathy
    46 yrs at surgery, now 50
    71 degree thoracolumbar curve corrected to 34 degrees
    8/2/2010 surgery with Dr. Lenke

    posterior T9 to sacrum with pelvic fixation

    4 osteotomies and 1 cage
    http://s1066.photobucket.com/albums/...athK_08022010/

  9. #9
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    Wasnít a tough decision for me after a highly respected surgeon with 40 years experience told me that while he could not predict when but could tell me for certain that one day I would not be able to stand up. I really saw my curve take off following menopause. And this same surgeon told me surgeons are seeing more and more women like myself who present with pain and worsening deformities following menopause. The two years before my surgery my standing duration was becoming unbearable. I constantly found myself leaning against whatever I could find for support. When I saw my curve measured at 73 degrees in Dr. Bridwellís office and the following year measured at 80 degrees in my surgeonsís office (and I could see the progression for myself when both x-rays were side by side), I knew I could not postpone surgery any longer. When curves reach this size, they donít just suddenly stop progressing.

  10. #10
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    Quote Originally Posted by Confusedmom View Post
    Hi everyone,

    I am having trouble finding research about the natural history of lumbar scoliosis. There seems to be a lot of info. saying that thoracic curves can lead to heart/lung problems if allowed to progress to 90+ degrees. But what happens with lumbar curves? Does anyone know of any studies on this? Linda?
    I'll do some digging when I have the time.
    Quote Originally Posted by Confusedmom View Post
    Given the complexities of lumbar surgery and the strong likelihood of post-surgical pain, as well as the possible need for follow-up surgery, it would be nice to know if there is some research supporting surgery in the lumbar spine.

    Here's what I know:
    Chances for chronic post-surgical lower back pain when fused to L4 or L5: 70-80%
    Chances for need for additional surgery: 26% (varies somewhat by study)
    Be sure that you're looking at only recent studies. Studies that include surgeries prior to the mid-90's will mostly include patients that had entirely different implants.
    Quote Originally Posted by Confusedmom View Post
    Here's what I don't know:
    If you just let your lumbar curve go and it gets to 100+ degrees, is the problem mainly cosmetic? What about 125 degrees?
    Yes, you have pain, but you have pain anyway from surgery and the stress it puts on your lower back. Which is worse?
    Are there vital organ complications if it gets that big?
    One doctor I saw said he sees "lots of little old ladies with very significant lower back curves who come in, get their pain epidural, and basically get along just fine."
    The symptoms are most likely pain (including leg pain) and deformity. I've heard people say that their organs were"squished", but I don't think there's any research to back that up.

  11. #11
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    Kathy & Chris,

    Thanks for reviving this. I have been told like both of you that most likely this will keep progressing. In fact Dr. Bridwell said it will "definitely" keep progressing. However, I have also heard that some 70+ degree curves fuse spontaneously.

    Nonetheless, I think I have decided to opt for surgery. Now it's just a question of when & who. (I'm cancelling my scheduled appt. with my local surgeon because he's proposing the most aggressive operation of any of the docs I've seen.) My decision comes down to the knowledge that basically I will continue to become progressively more debilitated and deformed, even if it doesn't ever lead to heart/lung problems.

    Evelyn
    age 44
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke, T4 to S1 with pelvic fixation
    Not "confused" anymore, but don't know how to change my username.

  12. #12
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    Evelyn,

    So glad for you that you sought other opinions from what I perceive more competent surgeons. Personally, after reading your first post, I thought you were given some bad advice. I wish I could have had this surgery sooner before my deformity became so significant.

  13. #13
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    hey Ev
    where did you get those quotes on pain after lumbar surgery??? i have been told quite the opposite!
    my surgeon, and all the ones i've consulted, are telling me the odds on having little to no pain..are...after surgery....very good!!

    i need surgery to pelvis, so i would have...hopefully...no need for revision...unless upper thoracic went bad...i need T11-pelvis

    i have tremendous pain in lumbar...my upper pain (thoracic) is helped with botox shots...but nothing has helped lumbar pain...not epidurals, not nerve ablation, not facet block..nothing...the only help i've gotten ..dont know how long it will last..is the left sciatica has been helped by recent epidural..no other epidural has helped anything...and i've had several other epidural injections over the years!! i think the doctor who told you about "the little old ladies" displayed quite a limited knowledge of this! several doctors have told me structual scoli is often not helped with epidurals...those injections are more apt to help nerve related pain...like sciatica!

    also..i havent seen disc disease mentioned in all this..it seems to often accompany lumbar scoli...and my surgery would clean out the discs and put spacers in...so how about mentioning how much pain is caused by bad discs...and how much relief is obtained from surgery...when it is done with scoli surgery...??

    oh..and i dont think that age 38 qualifies as any kind of older!!...i think it qualifies as younger!!

    jess
    Last edited by jrnyc; 07-01-2010 at 12:36 AM.

  14. #14
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    lumbar curve

    I was originally fused to L-4 in 1956. I have the lumbar x-rays to demonstrate a doubling of that curve in 20 years.

    I am fused to the sacrum and am delighted I still have no pain 7 years after my revision at age 60.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  15. #15
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    hey Karen
    that's what the surgeons i've seen have told me to expect...including Dr B.! so happy to hear that you are pain free!

    jess

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