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Thread: PLEASE help me understand!

  1. #16
    Join Date
    Sep 2008
    Posts
    16
    Thank-you for all the replies!!!

    I haven't been on this forum for quite some time so I will give you all an update on where I'm at.

    October 2008 - (when I first posted this topic) My curve appeared to be between 55 - 60 degrees due to the way I was standing. My surgeon had never seen a curve like this especially since it had increased by between 15-20 degrees in just 3 months.

    February 2009 - My curve was 50ish degrees and looked more normal, even though it still slightly puzzles my surgeon. He wanted to put me on the list for surgery but I was too much underweight so he told me to come back in 6 months and I would hopefully have gained some weight.

    August 2009 - My curve was about 52 degrees (maybe a bit more) and I was put on the waiting list for surgery. We were told it could take over one year though till I have the surgery!

    Anyways, I still suffer from a lot of pain. There is not one day that goes by when I am not reminded of my scoliosis. Simple daily tasks such as sitting and standing are incredibly difficult for me now. I hope that one day soon my back will be "fixed." I know that I will always have scoliosis and my back will never be completely normal but it has to improve.
    Sarah
    Australian
    15 years old
    Spine Fused - 06/04/10
    Was: 55 degrees
    Now: About 0 degrees

  2. #17
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    Hi. Glad you posted and sorry to hear about your pain.

    Your trajectory seems unusual but yet similar to the one Pam (from here) had. Are you wearing a brace or were you when the curve stabilized? If not then the brace proponents certainly have their work cut out for them between you and Pam.

    It shot up to about 50* and held there. Your curve has been stable for almost a year and possibly longer. If the 15-20* in three month figure is correct, that would be similar to my one daughter whose curve moved on average 5* a month for at least five months.

    I hope something can be done for your pain. If you can get a handle on that and your curve remains stable you may not need surgery.

    Good luck.
    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. #18
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    Okay I'm trying to figure out from what you wrote what is going on. I have hte following:

    May 2008 - 41*

    October 2008 - 55-60* and stopped wearing the brace.

    February 2009 - ~50*

    August 2009 - ~52*

    So your curve progressed 14-19* in 5 months or about 3-4* a month and then stayed stable for almost a year.

    The reason they asked you to stop wearing the brace when you were over 50* is I don't think braces even claim to help once the curve is in that territory but I don't know that.

    The unusual part is the stability after reaching ~50*, not the documented rate of progression or anything else as far as I can tell.

    They simply have to help you with the pain and not continually ask you to wait.

    Have you had a MRI?
    Last edited by Pooka1; 12-13-2009 at 02:47 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."

  4. #19
    Join Date
    Sep 2008
    Posts
    16
    Sharon, your timeline is correct but my surgeon ignores the major jump as the degree of my curvature was because I couldn't stand properly (i was like a hunchback for 6 months). He just goes by that it has gone up +10 degrees in the past year.

    Oh and yes I had an emergency mri last year but all was normal.
    Sarah
    Australian
    15 years old
    Spine Fused - 06/04/10
    Was: 55 degrees
    Now: About 0 degrees

  5. #20
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    Quote Originally Posted by sariberri View Post
    Sharon, your timeline is correct but my surgeon ignores the major jump as the degree of my curvature was because I couldn't stand properly (i was like a hunchback for 6 months). He just goes by that it has gone up +10 degrees in the past year.

    Oh and yes I had an emergency mri last year but all was normal.
    Sarah,

    From your signature, are you saying you have to endure pain for another year before you get into surgery? Is the surgery expected to hep the pain?

    I certainly hope they are helping with your pain now.

    Did you ever find out what exactly is not unusual about your curve?

    ETA: You progressed ~10* in 15 months, not a year if your timeline is correct. At least six months of that you were stable. That is a very interesting trajectory if you don't mind me saying so.

    Good luck.
    Last edited by Pooka1; 12-14-2009 at 05:52 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."

  6. #21
    Join Date
    Sep 2008
    Posts
    16
    Quote Originally Posted by Pooka1 View Post
    Sarah,

    From your signature, are you saying you have to endure pain for another year before you get into surgery? Is the surgery expected to hep the pain?

    I certainly hope they are helping with your pain now.

    Did you ever find out what exactly is not unusual about your curve?

    ETA: You progressed ~10* in 15 months, not a year if your timeline is correct. At least six months of that you were stable. That is a very interesting trajectory if you don't mind me saying so.

    Good luck.
    My surgeon said that he can not guarantee anything in regards to my pain. He said some people find the surgery helps their pain whereas others find it causes more pain.

    They are not helping my pain at all now. My mum asked my doctor (not my surgeon as they don't prescribe anything) for something to help my pain but he wouldn't do anything.

    I don't really know why my curve is so different my surgeon is just worried about it when he goes to operate. He hasn't decided whether he should fuse just my curve or the rest of my spine as well in case the top or bottom curve.
    Sarah
    Australian
    15 years old
    Spine Fused - 06/04/10
    Was: 55 degrees
    Now: About 0 degrees

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