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Thread: Should I wait to have surgery and do physical therapy?

  1. #1
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    Should I wait to have surgery and do physical therapy?

    Hello Everyone,
    This is my first post, but I have been reading for many months now. I am a 30year-old female with a 50 degree lumbar curve to the left that has progressed about 1degree a year for the last 7 years. I am scheduled to be fused from T10-L3 in early January by Dr. Gupta at University of Chicago. He seems like a very conservative, thorough surgeon, so my new-found doubts about surgery have nothing to do with being uncertain if it will go well. I believe in him.

    What I'm concerned about is why exactly I am doing this. Since I started working with a movement specialist in June, working on my breathing, and progressing to full-on physical therapy to prep for the surgery, my pain has really subsided. It has diminished significantly with sitting or standing for a while, and resting pain (like when I wake up in the morning) is almost entirely gone.

    Dr. Gupta and his nurses said there is a 50% chance this surgery will not fix my pain. But he said it will prevent the curve from getting worse and give me a nicer waistline. But I wonder, since PT is going so well, if there is anything I can continue to do, physical therapy wise, to slow the progression? If I can, then the only reason to have this surgery is for aesthetics, and I don't know if that is a good enough reason for me. What am I giving up just for a nicer waistline? It seems like a lot. And there is the chance of developing compensatory curves above and below the fusion. Or flatback (I am really scared of flatback for some reason.)

    I've contacted the PTs at Scoliosis Rehab in WI after learning about it on this site. (Thanks!!) I sent them my x-rays and pics and will get their feed back in a few days. I know PT doesn't work for everyone, but I'm wondering if anyone on the forum has had luck with this approach? Specifically in adults. Can it slow progression? I seem to respond pretty well to it. When my current PT told me that my lumbar spine is very flexible, I began to wonder if muscle training could help realign the vertebrate, since they seem to be pretty mobile. Does anyone have any experience with this?

    For the younger women/men who had a lumbar fusion, is there any advice you would give some one who is having a REALLY hard time deciding simply because she is scared of losing range of motion? With a T10-L3 fusion, or something similar, how much has changed? I think about gardening, dancing, picking up my cat, having children... it goes on and on. I know I can never know exactly what it will be like, but I would be so grateful to talk to any one who has had a fusion similar to the one I'm considering.

    Ok, sorry for such a long post. I appreciate any and all feedback, especially since posts like this come up all the time.

    Cristi
    30 year old female, 50-55 deg lumbar curve
    Scheduled for T10-L3 fusion with Dr. P. Gupta Jan. 3rd
    Considering physical therapy options to slow progression.
    Last edited by ctown; 10-24-2010 at 03:09 PM.

  2. #2
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    Although PT and various exercises really help with pain, in my case, my spine kept curving. Pain is not the only indication for surgery; documented curve progression is.
    Some facts: The larger the curve the the less correction obtained and the more vertebrae needing fusion. The younger a person the faster the recovery.

    That being said it is serious surgery. Because progressing adult scoliosis cannot be stopped other than surgically it is the standard of care to permanently reduce and maintain correction.

    We, on this forum have never heard from a member whose curves were permanently reduced/progression halted by exercises, PT or chiropractic.

    We have all suffered from fear and denial in dealing with scoliosis. There are unscrupulous practitioners who play on those fears.

    There are other forum members who were helped by Dr. Gupta.
    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

  3. #3
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    Quote Originally Posted by ctown View Post
    Hello Everyone,
    This is my first post, but I have been reading for many months now. I am a 30year-old female with a 50 degree lumbar curve to the left that has progressed about 1degree a year for the last 7 years.
    Just noting that about 1 degree a year for a curve that was <50* is higher than average. The paradigm is about one degree a year for curves larger than 50*. Also, lumber tend to progress less than other types of curves. Those two things may or may not indicate you have a more unstable curve with respect to future progression. Nobody knows I'm sure.

    What I'm concerned about is why exactly I am doing this. Since I started working with a movement specialist in June, working on my breathing, and progressing to full-on physical therapy to prep for the surgery, my pain has really subsided. It has diminished significantly with sitting or standing for a while, and resting pain (like when I wake up in the morning) is almost entirely gone.
    If you can control the pain with PT and your curve is only 50*, it might be reasonable to postpone surgery. I think there is some evidence that some PT has been able to hold a curve at least for a while but you have to do it the rest of your life. There are so few cases of reducing a curve and they are all temporary that it isn't worth discussing in my opinion.

    But like Karen said, if the curve progresses, you likely will not get as good a correction and you likely will need a longer fusion. As of now you are looking at a 6-level fusion which is pretty short in my opinion... both my daughters have 10-level fusions.

    Dr. Gupta and his nurses said there is a 50% chance this surgery will not fix my pain. But he said it will prevent the curve from getting worse and give me a nicer waistline. But I wonder, since PT is going so well, if there is anything I can continue to do, physical therapy wise, to slow the progression? If I can, then the only reason to have this surgery is for aesthetics, and I don't know if that is a good enough reason for me. What am I giving up just for a nicer waistline? It seems like a lot. And there is the chance of developing compensatory curves above and below the fusion. Or flatback (I am really scared of flatback for some reason.)
    Those are good thoughts. Only a 50% chance of fixing the pain? Wow. That makes the decision hard in my opinion given that PT has a better track record in your experience for you.

    Linda can chime in but the risk of flatback with the new instrumentation is vanishingly small. I thought it was non-existent but Linda said there are still occasional cases. My point is that it is too rare to stress over it in my opinion. It is largely associated with H-rods, not the new instrumentation that you would get.

    One thing you should ask Gupta point blank... what is the chance you will need an extension further into the lumbar and when is it likely if he stops at L3. The answer to this may matter to your decision.

    Good luck. I think you do have options here in my opinion unlike either of my daughters.
    Last edited by Pooka1; 10-24-2010 at 04:57 PM. Reason: spelling
    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."

  4. #4
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    Hi Crisi....

    I personally think you should exhaust every possible conservative approach before heading in to surgery. There is nothing urgent about the surgery, so taking a year or two to try to find another solution carries little risk. If you're the sort of person who can stick with daily exercising for the rest of your life, I think you may be one of the few who can avoid surgery.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  5. #5
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    Quote Originally Posted by LindaRacine View Post
    If you're the sort of person who can stick with daily exercising for the rest of your life, I think you may be one of the few who can avoid surgery.
    Yeah I would say of all the testimonials, this one seems like one that can avoid surgery if the PT can hold the progression.
    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."

  6. #6
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    Since when can any exercise, P.T. or anything else but surgery halt progression of curves?

    ctown, it's worth considering when/if you plan on a family. If you have surgery now, then kids down the road, it's all over and you're in good shape for raising children. If you have kids now (ish) and then have your surgery ten years later when your curve is over 60 degrees, your kids will be dealing with your long recovery.

    50 degrees now at your current progression is, obviously 60 degrees in ten years, and 70 degrees when you reach my age (50-ish). I can tell you I had little to no pain until my curves went over 50 degrees, but I have a great deal of rotation, you may not. Also, as you age, arthritic changes combine with the scoliosis to create more potential pain and problems.

    But at 30 years old, you don't need to be in any hurry to have the surgery, and if you're feeling good, there wouldn't seem to be any compelling reason to do it right now.
    Stephanie, age 56
    Diagnosed age 8
    Milwaukee brace 9 years, no further treatment, symptom free and clueless until my 40s that curves could progress.
    Thoracolumbar curve 39 degrees at age 17
    Now somewhere around 58 degrees thoracic, 70 degrees thoracolumbar
    Surgeon Dr. Michael S. O'Brien, Baylor's Southwest Scoliosis Center, Dallas TX
    Bilateral laminectomies at L3 to L4, L4 to L5 and L5 to S1 on April 4, 2012
    Foramenotomies L3 through S1 in August 2014

  7. #7
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    Quote Originally Posted by Mojo's Mom View Post
    Since when can any exercise, P.T. or anything else but surgery halt progression of curves?
    There's reasonable evidence that continued exercise can sometimes halt (and very rarely reduce) curves, with emphasis on continued and sometimes.

    Christi, I have a 22 year-old son with a slightly larger thoracic curve (average measurement of 55 degrees) who is also putting off surgery until something more compelling--either pain or progression--edges him into the "surgery" category. He's also had a lot of luck with exercise - it stopped the intermittent pain he was experiencing, and it greatly improved his appearance. On his last visit, his curve was 6 degrees smaller, but his measurements have been so unreliable that I probably won't sit up and take notice until his curve is either up or down by 10 degrees.
    Last edited by hdugger; 10-24-2010 at 08:53 PM.

  8. #8
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    Quote Originally Posted by Mojo's Mom View Post
    Since when can any exercise, P.T. or anything else but surgery halt progression of curves?
    I think I overstated the case... the weasel words that need to be added include... "for a while" and "not necessarily at 50*." I think Hawes and that one SEAS patient and probably that yoga woman have slowed/halted their progression but I don't know that and it can never be proven.

    PT is virtually impossible to study as it relates to scoliosis other than pain issues. That doesn't mean it can't slow/halt progression. It's just you can't know if the curve stopped on its own while you are busy exercising.

    I agree surgery is the only treatment modality shown to halt progression of curves.
    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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    Wink My 2 cents

    I can tell you that if I could have controlled my pain with PT, I would never have had surgery. Especially at the age of 30. Surgery is permanent and there are no guarantees. I am a believer in conservative treatment if it works...Flatback is a valid concern ( I had it after my first surgery and its no picnic). At some point, if PT is not working for you anymore, and pain becomes more severe and you are still progressing, in my opinion surgery becomes the better option. Again, just my opinion which has become shaped by my experience ;-)))
    May 2008 Fusion T4 - S1, Pre-op Curves T45, L70 (age 48). Unsuccessful surgery.

    March 18, 2010 (age 50). Revision with L3 Osteotomy, Replacement of hardware T11 - S1 , addition of bilateral pelvic fixation. Correction of sagittal imbalance and kyphosis.

    January 24, 2012 (age 52) Revision to repair pseudoarthrosis and 2 broken rods at L3/L4.

  10. #10
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    welcome to the forum, Cristi!

    i dont remember if you mentioned how bad your pain is...?
    also, do you have any other issues besides the scoli...like disc degeneration, spinal stenosis, listhesis, rotation, etc...?

    i agree with the others who say to try the PT....i would definitely wait on the surgery...especially since there is never a guarantee that it will eliminate the pain! maybe the PT exercises will both get rid of the pain and also control the progression...that would be terrific!

    best of luck....
    jess
    Last edited by jrnyc; 10-25-2010 at 12:05 AM.

  11. #11
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    Hi Cristi!

    Glad you spoke up!

    My curves are a bit further along, as is my age, but I can see some similarities...

    At your age, my curves were in the mid-40's They progressed slowly and during this time, I just stayed fit and exercised quite a bit. I also gave birth to three kids and raised 4, so I was often too busy to dwell on my aches and pains, which were very tolerable. It was hard for me then and still is to discern when I am having scoli pain or when I am having exercise "good pain". I don't know whether basic fitness contributed to holding curves (they definitely never decreased), but I am quite sure it hasn't hurt. My curves now are in the high 50's or low 60's, depending on measurements of the day or doc (I have seen a few), and I still have not had surgery, although I am presently seriously considering it.

    Recently I was in NYC and had the opportunity to visit a Yoga for Scoliosis class, based on Elise Miller's yoga work. I took a class and then later had a private session with the instructor. To my surprise, I discovered she was fused from T4-L2. There were no cats there, but if there were, she could have easily picked one up. Or gardened, danced with some modification, etc. I have the same reluctance, at the age of 55 3/4 of losing even a little flexibility, as I have greatly enjoyed that aspect of my physical self and all it's (?) glory...but I do think it is coming rather soon- that loss in the form of The Surgery. I am finally getting sore enough and tired enough, but it's been a good ride. In the meantime, I have some Yoga for Scoli moves to practice.

    I hope you will remain diligent with your yearly visits to the scoli doc- very important, especially for you whose curves seem to have progressed with some speed (I hesitate to even write that, as there have been some years for me when my curves went from 56ish to 65ish and now back down to 57ish or maybe 62ish!) *But If It Were Me*, and that is my huge disclaimer, because I am speaking from my curves-moving-slowly experience...so If I Were You, I would take a little time to explore exercise and PT possibilities.

    I will look forward to hearing from you more. I hope you keep posting!!
    Amy
    58 yrs old, diagnosed at 31, never braced
    Measured T-64, L-65 in 2009
    Measured T-57, L-56 in 2010, different doc
    2 lumbar levels spondylolisthesis
    Exercising to correct

  12. #12
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    Thank you so much for all of your input. Other than my lumbar curve, I only have slight thoracic rotation - it is not enough to even consider fusing. My discs are all in good shape.

    I hesitate to describe my pain in the past tense, but I'll knock on wood and go for it. The pain would come when I stood for more than 20min, almost without fail. I would HAVE to sit down, and/or rub my sides. I haven't noticed this as much in the last 6 months since I started daily breathing exercises. Sometimes it would come when I sat for a while, or in the morning when I woke up, but not always. 2 ibuprofen usually solved the problem. And I haven't needed to take them as much! Even with the PT, I do still have pain during menstruation, where it feels like the curve is literally getting worse by the hour, but I don't know if that is just normal cramping. The real test will be this weekend when I have to stand for around 3 hrs!!

    I am leaning more and more toward trying the PT for a while before surgery. I was worried about the curve interfering with pregnancy and raising children, but there doesn't really seem to be a consensus on whether or not it's better to have surgery before or after kids. Everything seems to vary so much based on the patient and the kind of fusion.

    In my case, deep down I have this feeling - always have- that my particular curve could be helped through PT, but i didn't want to be foolhardy and ignore my surgeons advice. I value all of your advice too. It's helping me realize that I am not being "new-agey" because I believe in the possibilities of PT. I know the results are super variable and don't work for everyone. But I would be willing to do exercises everyday for the rest of my life if it meant i could still do the rest of the things i enjoy (though I am happy to hear of the therapist in new york with a fusion and apparently normal mobility) It would be nice if the exercises could help with my appearance too Does anyone else notice how things look so much worse on a camera than in the mirror? I was SHOCKED! And thankful for mirrors!

    I will let you know what the folks at Scoliosis Rehab say, and try to post some pictures, in case anyone is interested.
    Cristi
    30 year old female, 50-55 deg lumbar curve
    Diagnosed with 30deg lumbar curve at 18
    Scheduled for T10-L3 fusion with Dr. P. Gupta Jan. 3rd
    Considering physical therapy options to slow progression.

  13. #13
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    Cristi...that you can get help from ibuprofen is amazing!!
    the pain many folks on forum talk about requires heavy duty prescription medication!
    i would DEFINITELY go with the exercise!!

    good luck...

    jess

  14. #14
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    It's sobering to hear that the surgeon only gave her a 50-50 chance of getting rid of the pain by fusing. That's why PT might have a better track record for pain though of course not for progression where we have a literal handful of people who might have held their curve for some period of time with PT. And that is as against the bazillions who tried and failed to hold their curve with PT.

    With lumbar curves, it seems like it more reasonable to postpone surgery because of the mobility issue. Even if they don't fuse the entire lumbar at first, if the fusion goes to L3 or below, the rest will have to be fused eventually as per what I was told. So it's a question of what will ruin the discs quicker... fusion into the lumbar or not fusing and having the curve destroy the discs. You have to figure out how much time/mobility do you have with fusion to L3 and a later extension versus not fusing now and potentially needing a fusion to L5 or S1 down the road. I don't think anyone can know what the right answer is there.
    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."

  15. #15
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    Quote Originally Posted by ctown View Post
    But he said it will prevent the curve from getting worse and give me a nicer waistline.
    That would be good enough reason for me to have surgery. By the time I went into surgery I was truly deformed. If current technology was available when I was 30, it would have spared me from goring through life with a progressive deformity. And these deformities do indeed worsen over time. Having surgery at a younger age has so many advantages…a faster and easier recovery, most likely a shorter fusion, fewer risks for complications, and more years to enjoy a better body image.

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