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Thread: conflicting opinions about surgery...

  1. #1
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    Jul 2004
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    conflicting opinions about surgery...

    Hi everyone,

    So, after a long, long wait for a second opinion, which I was sure would advise the surgery, Dr number 2 told me in no uncertain terms that he would not recommend it. !! I was completely in shock.

    My curves are 46/30 (remembering the margin for error), from 40/30 ten years ago. (I thought surgery would surely be recommended because of that progression.) The second opinion doctor told me that until the curve got to 50 degrees progression was not a certainty. The other doctor I had seen had told me that anything over 40 would get worse, especially with a history of progression.

    What numbers have you guys heard with regard to progression? Now I am just confused. My second opinion was the best doctor recommended by an MD I really trust. I am going to get a third opinion next week in a different city... but now I kind of feel like I'm just collecting opinions...

    It would be really helpful to know what other people have heard about "cut off lines" for surgery in cases where progression, not pain, would be the reason.

    Thanks in advance. I don't know what I'd do without this forum! ~Laura

  2. #2
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    Hi Laura....

    In recent years, I've heard the 50 degree figure far more than 40 degrees. Even if your curves are likely to progress, it's unlikely that they'll progress rapidly once you've reached skeletal maturity. So, if your pain isn't significant, I don't see any harm in waiting 5 more years to see if progression will continue.

    Regards,
    Linda

  3. #3
    Join Date
    Apr 2004
    Location
    new jersey
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    Hi,

    Your scoli curve progression rate should also corespond with your increase pain rate....If together they are getting worse, than surgery can be an option for you..My spine curved from 40 to 45 to 53 in 5 years, my pain was bad, unable toi sleep or stand for 15 minutes at a time...so I was positive I was only going to get worse...so I had surgery this passed June....Don't rush into anything, it's a very serious surgery .
    CONNIE


    Surgery June 28th 2004
    fused T4 -L3
    Hip graft
    Grown 1 1/2 inches
    25/o upper T 15/o
    53/o T 15/o
    37/o L 6/o
    Dr. Micheal Nuewirth
    New York City

    August 6, 2004
    Pulmonary Embolism
    complication from surgery

    January 2007 currently
    increasing pain at the T4/5
    point irratation heardwear

  4. #4
    Join Date
    Sep 2003
    Location
    Northern California
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    Hi Connie...

    Just to be clear, many people whose curves increase, don't have increased pain. Also, many people have increased pain without having a corresponding increase in curve size. It's my understanding that significant pain AND/OR significant increase in Cobb angle are both acceptable reasons to consider surgery.

    Regards,
    Linda

  5. #5
    Join Date
    Apr 2004
    Location
    new jersey
    Posts
    323
    Linda,

    So if someones curve is under 40 but has extreme pain..R they a canidate for surgery.....or if someone has 75 degree and no pain....should they have surgery??? I do believe what U say, but a sugeon will not operate unless it's the last resort....but on the other hand it's the persons choice in the end
    CONNIE


    Surgery June 28th 2004
    fused T4 -L3
    Hip graft
    Grown 1 1/2 inches
    25/o upper T 15/o
    53/o T 15/o
    37/o L 6/o
    Dr. Micheal Nuewirth
    New York City

    August 6, 2004
    Pulmonary Embolism
    complication from surgery

    January 2007 currently
    increasing pain at the T4/5
    point irratation heardwear

  6. #6
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    7,102
    Hi Connie...

    No, most surgeons won't operate on curves < 40 degrees. But, a 46 degree curve on someone with a lot of pain is usually considered operable, even if no progression has been shown. And, there are plenty of people with huge curves who haven't had surgery because they don't have pain.

    My point was that while pain and progression are the two big reasons for adults to consider surgery, they don't always go hand in hand. :-)

    Regards,
    Linda

  7. #7
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    thanks... and child-bearing

    Hi there,

    Thanks so much, Connie and Linda, for the replies. They really gave me confidence in thinking about my options at this point. I saw my third opinion today, and he concurred with the second opinion that I should wait a few years to monitor further progression before undertaking surgery. While there is still some thinking to be done--in so far as both doctors think I will eventually need the surgery, and that their time scale puts surgery right in the middle of my most likely child-bearing years--I was glad to hear two separate opinions in agreement.

    On the subject of child-bearing, does anybody have strong opinions on the question of whether to have the surgery before or after child-bearing? I know this is a difficult question, but it would be helpful to hear any views on this, from people who have had children after surgery, or from those who had children then went through surgery.

    Thanks, as usual, for any info or insights. ~Laura

  8. #8
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    Hi Laura...

    There's no perfect time to have kids. If you have surgery before you have the kids, you may find it difficult to carry the kids as they get heavier, and especially to get them into car seats. If you have kids, then surgery, you'll almost certainly be limited to lifting the kids.

    Based on the people I know who have been through surgery, I'd recommend waiting to have surgery until your kids are at an age where you don't have to lift or carry them any more.

    Whatever you decide, I'd encourage you to get x-rays before and after pregnancy to see if your curve is increasing.

    Regards,
    Linda

  9. #9
    Join Date
    May 2004
    Posts
    35

    Regarding childbearing

    Hi Laura,
    Ironically, the year I was planning to start preparing for the surgery decision, I got pregnant with my first child. In retrospect, I'm sure it was a subconscious intentional act on my part. I mean, by 32 I certainly knew how to avoid pregnancy! Once I began motherhood, I decided to wait altogether. Now I'm 40 and have 2 beautiful boys and I have no regrets about waiting. Pregnancy was not too difficult on my back. Carrying babies caused a lot of pain and I'm sure the arthritis in my lower spine is worse as a result of that. But I am fine and do everything I need and want to do.

    I don't have anything definitive to tell you but I thought it may be helpful to get a perspectve of someone who waited. I wasn't ready to make that decision 8 years ago and its a good thing I didn't wait to start a family because I'm still not ready! I don't know your age but I guess I'd keep in mind that our timeframe for bearing children is shorter than our timeframe for having surgery.

    Good Luck, Nora

  10. #10
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    Northern California
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    Thanks so much Nora for your words about your own situation. It's good to hear something positive from somebody who waited. I appreciate the insights, especially about the pain level while you were carrying the children. I am expecting this myself when the time comes, but it's great to hear your positiveness and that you're glad you were cautious. Thanks again. I appreciate it! Laura

  11. #11
    Join Date
    Aug 2004
    Location
    san diego
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    Had scoliosis since 12. Had normal pregnancies at 24, 25 and 26 years of age. Now at 57, still thinking whether to have the surgery or wait some more. Except for the big hump, I only have minimal discomfort and I am very active (walking, full time job and grandkids). The only thing that the doctor is concerned is that the 67 degrees curve would go up to 100. What if I am 70 years old by then and not a good candidate for surgery anymore. I am praying for a wise decision. In the meantime, life is good and I am enjoying every minute of it. Take care.

    Letty

  12. #12
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    Hi Letty...

    I think you have a difficult decision. What sort of progression has been documented in the last 10-20 years? MOST large curves progress 1 to 2 degrees a year. If that holds true in your case, you'd have an 80-93 degree curve by the age of 70. At 93 degrees, you may start getting into difficulty in terms of pulmonary function. But, if you're progressing at about 1 degree a year, you have a good chance of leading a fairly normal life.

    I can tell you that the "older" people I know who have relatively little pain are the ones who seem to be the most unhappy about their outcomes.

    Regards,
    Linda

  13. #13
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    Aug 2004
    Location
    san diego
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    Linda,

    I think the progression is more like 2 degrees/year. The reason I am having second thoughts is that right now, I am enjoying life to the fullest with very minimal discomfort. When I think about the limitations that might happen or the pain that might increase, I chicken out big time. Pray for me.

    Letty

  14. #14
    Join Date
    Nov 2004
    Location
    England
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    Letty,

    I can totally understand your dilemma.

    I am 52 and finding it hard to make a decision re surgery. I have a thoracic lumbar curve of 70 degrees and know that this will degenerate 1/2 degrees a year.But I'm scared to replace a set of problems I can cope with,with the unknown.

    Best wishes,

    Jenny

  15. #15
    Join Date
    Oct 2004
    Posts
    459
    I have to say that as time gets closer to my scheduled surgery date in January, I'm a bit more worried about my decision to undergo surgery right now and am considering putting it off and getting some more opinions from other doctors.

    I'm 29, very active with very little, if any pain. My curves are both at 75 degrees (top and bottom of spine) and I am shrinking already, which shows that my scoliosis is progressing. I have a very short torso, so there isn't much room for more shrinking! My doctor also believes from my stretch x-rays that my top curve is beginning to naturally fuse itself. I already have asthma and will most likely suffer more pulmonary and cardio issues as I get older...but again, am not really suffering yet.

    I've yet to have children and my thought is that it's best to have this surgery while I'm young and can recover more quickly and don't have kids running around the house. But then I worry that I may end up with mobility restrictions as a result of the surgery....and will regret having the surgery at such a young age with so much ahead of me. I guess I'm second guessing my decision to have surgery now.

    What do you all think???? I need to hear from people who've gone through this and know what it's like....I know no one, except for those on this board, who has elected to undergo such a major surgery.....

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