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Thread: Had my daughter not been fused...

  1. #1
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    Had my daughter not been fused...

    and assuming her documented curvature rate stayed constant, her curve NOW would be about...


    wait for it...


    128*.

    In other words, she would be dead.

    And Weiss will sit there and tell you surgery is for cosmetic reasons only. He should be ashamed of himself.
    Last edited by Pooka1; 05-26-2009 at 09:39 PM. Reason: replaced "assumed" with "ashamed"
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
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    "We are all African."

  2. #2
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    Hope

    Pooka1....

    Your daughter's story gives me so much hope that if one day my daughter or grandkids or anyone in my family for that matter ever needed

    " the surgery "..... that a happy life AFTER is very possible.

    So happy for how well everything has turned out for her ...thanks for sharing.

  3. #3
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    Hey you're welcome. But my kid did all the real work.
    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...

    Just for the record, I've known several people with curves larger than 128. With that said, I wouldn't want my kid to ever have a curve that large.

    Regards,
    Linda

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    Quote Originally Posted by LindaRacine View Post
    Hi...

    Just for the record, I've known several people with curves larger than 128. With that said, I wouldn't want my kid to ever have a curve that large.

    Regards,
    Linda
    Really?

    How are they doing?

    My daughter is 14. There is no reason to believe it wouldn't stop curving beyond now and it is reasonable to suggest it would kill her sooner rather than later. So Weiss still needs to be ashamed of himself.
    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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    Here are the estimated curvatures assuming the rate stayed constant:

    May 2010 - 188*
    May 2011 - 248*
    May 2012 - 308*
    May 2013 - 368*

    Of course she would have been debilitated far sooner and would be dead eventually from this.

    Weiss should be ashamed of himself.
    Last edited by Pooka1; 05-27-2009 at 06:40 PM.
    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
    and assuming her documented curvature rate stayed constant, her curve NOW would be about...


    wait for it...


    128*.

    In other words, she would be dead.

    And Weiss will sit there and tell you surgery is for cosmetic reasons only. He should be ashamed of himself.
    Yikes! It's a good thing she got fused when she did then and that she has been able to fully recover so well. Hopefully her success will continue far into the future. Just curious, do you have a direct quote of Weiss saying that "surgery is for cosmetic reasons only"?

    Also, more of a personal question I suppose...what does your unfused daughter think of all this? i.e...does she want the surgery? or is she happy she hasn't had to have it? i would think it would be very difficult to have an IDENTICAL sister that now has a normal looking straight back (especially at their age range when appearances start to become overly important)...

  8. #8
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    Quote Originally Posted by MissEmmyF View Post
    Yikes! It's a good thing she got fused when she did then and that she has been able to fully recover so well. Hopefully her success will continue far into the future. Just curious, do you have a direct quote of Weiss saying that "surgery is for cosmetic reasons only"?
    Nonsense from Weiss

    Health-related signs and symptoms of idiopathic scoliosis cannot be changed by surgery. Long-term beneficial effects of spinal fusion are not yet revealed and the long-term risks of surgery for scoliosis simply are not known. HRQL scores cannot be regarded as being valid considering the dissonance effect. Therefore the indication for spinal fusion surgery is for cosmetic reasons, only. When recognizing, that todays standard of conservative treatment can in fact lead to the same cosmetic effects as spinal fusion surgery, the latter treatment is rarely needed in patients with AIS.

    Also, more of a personal question I suppose...what does your unfused daughter think of all this? i.e...does she want the surgery? or is she happy she hasn't had to have it? i would think it would be very difficult to have an IDENTICAL sister that now has a normal looking straight back (especially at their age range when appearances start to become overly important)...
    She is very happy to not have it although she was rethinking not having surgery after seeing her sister's post-surgical back as you surmised. At one point, she realized she would never be close to straight if she didn't progress. She is lucky in that she has almost no rotation and so most people don't realize she has a 36*-40* T curve. It is a small mercy that she so unrotated because if her curve was very noticeable and she was sub-surgical, it would bother her.

    The main concern I have is that I don't believe a 36*-40* T curve in a 14 year old is stable enough to think she will never need surgery. And if she needs surgery, it is far better to get it as a kid. The only consolation here is that if/when she does get surgery as an adult, the techniques will be even better than they are now. And they are great now based on my others daughter's outcome... surgery has returned her to the general population on future back issues per her surgeon.

    My braced daughter finally grokked the issue of long-term stability and how brace wear might just delay versus avoid surgery. So she stopped wearing the brace. I think it's irrelevant if she wears or does not wear the brace... the curve stability and movement are not related to brace wear for her and I have the data to prove it.
    Last edited by Pooka1; 05-27-2009 at 11:47 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."

  9. #9
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    Quote Originally Posted by Pooka1 View Post
    Really?

    How are they doing?

    My daughter is 14. There is no reason to believe it wouldn't stop curving beyond now and it is reasonable to suggest it would kill her sooner rather than later. So Weiss still needs to be ashamed of himself.
    Hi Sharon...

    One person had surgery in her 40s with a curve of about 130. I haven't seen her in many years, but she was doing well. The other 2 have not had surgery as far as I know, but it's been years since I heard anything about them.

    To be realistic, I doubt that scoliosis curves are linear. There are probably periods of stabilization as well as periods of progression. And, in the meantime, if her curve reached 60 or 70 degrees in the future, she could always make the decision to have surgery. Surgery at the age of 30 or 40 doesn't have significantly more risk than surgery at 16. And, by the way, had she worn a brace like her twin, she may have had some stabilization that could significantly alter the natural history.

    Regards,
    Linda

  10. #10
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    Quote Originally Posted by LindaRacine View Post
    To be realistic, I doubt that scoliosis curves are linear. There are probably periods of stabilization as well as periods of progression.
    Yes that is certainly true. I have the data for my two daughters. One has had periods of stability and progression. Perhaps this is the most common scenario. The other has never been stable in-between diagnosis and fusion. Given that, there is no reason to expect her 58* curve would have stabilized for any length of time given that it moved 10* in the previous 2 months.

    And, in the meantime, if her curve reached 60 or 70 degrees in the future, she could always make the decision to have surgery. Surgery at the age of 30 or 40 doesn't have significantly more risk than surgery at 16.
    That's not my understanding. And certainly the recovery in kids is a fraction of that in adults on average. My kid was back in school full time after 25 days.

    And, by the way, had she worn a brace like her twin, she may have had some stabilization that could significantly alter the natural history.
    Not likely for two reasons.

    1. Two orthopedic surgeons chose not to brace her. There is a reason for that.

    2. Her twin's curve stability and progression were not related to brace wear. We have the data. So I don't see why my other daughter's curve progression would be related to brace wear.

    I don't think there is any evidence any brace has ever significantly altered the natural history of any curve. And I think we have some evidence the natural history of some curves is not likely to be altered by bracing (e.g., Marfanoid scoliosis).
    Last edited by Pooka1; 05-27-2009 at 06:42 PM.
    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."

  11. #11
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    Quote Originally Posted by Pooka1 View Post
    Yes that is certainly true. I have the data for my two daughters. One has had periods of stability and progression. Perhaps this is the most common scenario. The other has never been stable in-between diagnosis and fusion. Given that, there is no reason to expect her 58* curve would have stabilized for an length of time given that it moved 10* in the previous 2 months.



    That's not my understanding. And certainly the recovery in kids is a fraction of that in adults on average. My kid was back in school full time after 25 days.



    Not likely for two reasons.

    1. Two orthopedic surgeons chose not to brace her. There is a reason for that.

    2. Her twin's curve stability and progression were not related to brace wear. We have the data. So I don't see why my other daughter's curve progression would be related to brace wear.

    I don't think there is any evidence any brace has ever significantly altered the natural history of any curve. And I think we have some evidence the natural history of some curves is not likely to be altered by bracing (e.g., Marfanoid scoliosis).
    Sharon...

    We need to understand that people like Weiss may be dangerous, but trying to scare people into making the surgery decision probably isn't any less dangerous.

    --Linda

  12. #12
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    Quote Originally Posted by LindaRacine View Post
    Sharon...

    We need to understand that people like Weiss may be dangerous, but trying to scare people into making the surgery decision probably isn't any less dangerous.

    --Linda
    I deny doing that. I have used data in hand to make an argument. If you think I made a mistake in thinking, I would appreciate your pointing that out.

    Surgery is clearly the ONLY option in the case of rapidly progressing cases like my one daughter's case. That isn't meant to scare people... that is meant to relay a real case history in the face of nonsense claims otherwise from people like Weiss. That passage I posted is stem to stern nonsense and I question the publication of that article.

    Now I did learn something... I am surprised you know/knew three people with curves of at least 128*. That shocked me.

    Still, while my daughter would be about 128* now absent fusion, there is no reason to think it would magically stop there. She is only 14.

    Last, since we didn't have a choice whether or not to fuse my one daughter, I admit I have a hard time relating to folks who do apparently have a choice. I admit that. And I also think folks may have a problem with understanding my daughter's situation of having no choice because they haven't dealt with a rapidly progressing relentless curve. Sometimes, there is no choice. It's a learning opportunity both ways.
    Last edited by Pooka1; 05-27-2009 at 12:23 PM.
    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."

  13. #13
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    Sharon...

    I've heard of way worse cases. In 2003, at the San Francisco Spine Symposium, Dr. Boachie presented several very severe cases. I can't remember the details, but I'm thinking that some of the curves were as high as 150 degrees.

    By the way, I'm going to move this thread out of the Adolescent and Teen patient forum. Whether or not you meant to scare anyone, this discussion could certainly scare someone not old enough to understand all the elements of making a good decision.

    --Linda

  14. #14
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    I personally know three people with curves of over 120 degrees: a lady with a fused double curve of 120 degrees (correction wasn't possible so they fused her as she was), a lady in her 50s with a 150 degree curve that has never been operated on, and a lady who had a 155 degree kyphoscoliotic curve in her 30s and had surgery a couple of years ago which brought the curve down to the 70s. All three of these people have a great deal of life about them and live full lives with kids and careers! They're amazing. Sadly, the reason that all three of these ladies ended up with such large curves was that surgery wasn't available to them back when they first needed it.

    I also know of a wheelchair-using lady who has neuromuscular scoliosis and has a 180 degree curve. I haven't heard from her for a while and hope that she is OK

  15. #15
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    Sharon
    I am curious as to whether your daughter has finished growing, as many girls have by age 14. If not how much has she grown since her surgery?
    Ramona
    mom of Patrick, age 15 at time of surgery
    diagnosed July 2006 curves T58 L 38

    Nov. 2006 curves T72 L38
    also lordoscoliosis

    feb.2007 curves T79 L43

    Surgery May 16 2007
    fused T4 to L1

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