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Confusedmom
06-05-2010, 03:10 PM
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

Pooka1
06-05-2010, 05:29 PM
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.

LindaRacine
06-05-2010, 08:34 PM
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

leahdragonfly
06-05-2010, 08:54 PM
[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,

LindaRacine
06-05-2010, 09:11 PM
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

Confusedmom
06-05-2010, 09:20 PM
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

LindaRacine
06-05-2010, 09:45 PM
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 (http://www.ijoonline.com/article.asp?issn=0019-5413;year=2010;volume=44;issue=1;spage=9;epage=13; aulast=Wong)

--Linda

KathK
06-30-2010, 09:38 AM
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!

CHRIS WBS
06-30-2010, 10:24 AM
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.

LindaRacine
06-30-2010, 02:40 PM
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.


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.


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.

Confusedmom
06-30-2010, 02:46 PM
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

CHRIS WBS
06-30-2010, 03:56 PM
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.

jrnyc
06-30-2010, 06:33 PM
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 :eek:

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

Karen Ocker
06-30-2010, 06:44 PM
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.:eek:

I am fused to the sacrum and am delighted I still have no pain 7 years after my revision at age 60.:)

jrnyc
06-30-2010, 06:55 PM
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

Confusedmom
07-01-2010, 03:39 AM
Jess,

John Dietz at OrthoIndy (top orthopedic hospital in Indiana and he's an SRS doctor) said that about the pain after fusing to L4-L5. I have also read studies that suggest there is a high probability of pain after fusing to that area (but not lower). Also there's an almost certainty of disk degeneration.

Right now I don't much disk degeneration or pain, hence the waffling. However, Dr. Bridwell convinced me that this is likely to come (sadly)! He wants to fuse to sacrum with pelvic fixation. And I think that is the difference. Assuming you don't fracture your fixation there, I think fusing that low is supposed to relieve the pain, though you give up more flexibility.

Actually, I would like to start a new thread on the L5 vs. sacrum debate, but I need to do a search first. It's an interesting question that even the doc seem to still be debating.

But, bottom line for you is it sounds like surgery WOULD reduce your pain. The fact that you have more to begin with and that they're definitely fusing to sacrum make the difference (I think!:p).

Evelyn

Confusedmom
07-01-2010, 03:41 AM
P.S. Linda, thanks once again for the helpful input!

P.P.S. I'm not sure I trust the doctor who made the comment about little old ladies coming in for their injections and getting along fine. I'm sure this is true for some, but the probability with a 68* curve at age 38 seems low. :rolleyes:

Confusedmom
07-01-2010, 03:46 AM
Re-posting a study Linda put up a year ago....conclusion is basically lumbar patients do better with surgery.

Spine (Phila Pa 1976). 2009 Sep 15;34(20):2171-8.Click here to read Links
Does treatment (nonoperative and operative) improve the two-year quality of life in patients with adult symptomatic lumbar scoliosis: a prospective multicenter evidence-based medicine study.
Bridwell KH, Glassman S, Horton W, Shaffrey C, Schwab F, Zebala LP, Lenke LG, Hilton JF, Shainline M, Baldus C, Wootten D.

Department of Orthopaedic Surgery, Washington University School of Medicine, St. Louis, MO 63110, USA. bridwellk@wudosis.wustl.edu

STUDY DESIGN: Prospective observational cohort study with matched and unmatched comparisons. Level II evidence. OBJECTIVE: The purpose of this study is to compare results of adult symptomatic lumbar scoliosis (ASLS) patients treated nonoperatively and operatively. This is an evidence-based prospective multicenter study to answer the question of whether nonoperative and operative treatment improves the quality of life (QOL) in these patients at 2-year follow-up. SUMMARY OF BACKGROUND DATA: Only 1 paper in the peer-reviewed published data directly addresses this question. That paper suggested that operative treatment was more beneficial than nonoperative care, but the limitations relate to historical context (all patients treated with Harrington implants) and the absence of validated patient-reported QOL (QOL) data. METHODS: This study assesses 160 consecutively enrolled patients (ages 40-80 years) with baseline and 2-year follow-up data from 5 centers. Lumbar scoliosis without prior surgical treatment was defined as a minimum Cobb angle of 30 degrees (mean: 54 degrees for patients in this study). All patients had either an Oswestry Disability Index (ODI) score of 20 or more (mean: 33) or Scoliosis Research Society (SRS) domain scores of 4 or less in pain, function, and self-image (mean: 3.2) at baseline. Pretreatment and 2-year follow-up data collected prospectively included basic radiographic parameters, complications and SRS QOL, ODI, and Numerical Rating Scale back and leg pain scores. RESULTS: At 2 years, follow-up on the operative patients was 95% and for the nonoperative patients it was 45%. The demographics for the nonoperative patients who were followed up for 2 years versus those who were lost to follow-up were identical. The operative cohort significantly improved in all QOL measures. The nonoperative cohort did not improve and nonsignificant decline in QOL scores was common. At minimum 2-year follow-up, operative patients outperformed nonoperative patients by all measures. CONCLUSION: It would appear from this study that common nonoperative treatments do not change the QOL in patients with ASLS at 2-year follow-up. However, operative treatment does significantly improve the QOL for this group of patients. Our conclusions are limited by the fact that we were only able to follow-up 45% of the nonoperative group to 2-year follow-up, in spite of extensive efforts on our part to accomplish such.

jrnyc
07-01-2010, 06:42 AM
hah..just goes to show if you find medical stuff that says one thing, look a while and you'll find some that says the opposite! :rolleyes:

perhaps the thread could have been titled "outcome fusing L5 vs. to sacrum/pelvis"...might have been more descriptive of question...?

i have been told that between sacrum and pelvis being fused, there is little difference in what one can do after surgery....
i know there is a big difference fusing to L5 vs. to sacrum, and that is one reason some folks on forum have practically begged their surgeons to stop at L5!! they have said as much on here...

there is also no guarantee that if one has fusion to L5 that person will need revision later...but i do think there are lots of times that it appears likely...i think it would be wise, in those cases, to fuse lower...but i know a lot of patients resist...(all that begging)...i guess they can look at it as buying some time...but isn't it not wise to go against a good surgeon's recommendations...??!

jess