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Thread: I posted in the wrong age group---New here with severe scoiliosis

  1. #1
    Join Date
    Jul 2005

    I posted in the wrong age group---New here with severe scoiliosis

    Hi there...I am 24 years old, married and I have one child. 12 years ago, I found out that I had scoliosis. At that time, the specialist my family doctor sent me to said that the curves probably wouldn't get worse because I was through growing. I have 2 curves which started out in between 25-30 degrees and now they have progressed to 50-55 degrees!
    I should have seeked a second opinion, but of course I was just a child, and no one really educated my parents about it. The last time I had my back checked the curves hadn't progressed in about 5 years.
    I was told that I could die by one doctor, and told I could live to be 100 by another. Scoliosis is a very contradictive subject.
    So here I am with the double curves in the lower 50's, and I haven't had surgery, no treaments whatsoever. I did, however, get one hour of massage therapy which felt GOOD I have had one child with no complications, BUT, because of the extreme pain I feel on a daily basis, I've chosen not to have any more children.
    I've thought about surgery, and I feel like I would be restricted in movement more then I am now. Actually I have no physical restrictions, just chronic back pain. I also don't have any severe visual deformities. Of course, my hips are uneven, one shoulder is higher then the other, but nothing too severe. It bothers me personally because I sometimes feel like I am a freak.
    I have been on my own all this time with no support group, no one who truely understrands what its like to have this condition. My family supports me, but still no one else understands. I hope to become friends with other people on this website, so that we can go through this together.
    Please e-mail me at or post on here. I can't wait to talk to others.
    God Bless!

  2. #2
    Join Date
    Jun 2005
    Manitoba, Canada
    Welcome to the forum!

    I too opted to not get surgery.. and until recently I found it easy to deal with the pain. After careful consideration I changed my mind and actually begain looking forward to getting surgery. Unfortunatley I'm now on a 1 to 2 year waiting list just to see a specialist

    I'm going to keep waiting and in the meantime I'm trying to hunt down another Dr.

    I'm sure you'll find many of the people on here friendworthy. I can't imagine living with scoliosis without this forum now. It's so great to be able to talk with so many people about scoliosis.. in my whole life I only knew 1 other person who had it! Feel free to ask any questions.. there are almost always answers
    Age 28
    diagnosed at age 12
    wore a boston brace until age 14
    No surgery, was on "wait and watch" till recently. Got a SpineCor (Jan 27th) to help ease the pain.
    T-curve 73 degrees with severe rotation (curves to the right)
    L-curve 45 degrees with slightly less severe rotation than my T-curve (curves to the left)

    1994 - 5'10" - T-?/L-? (i forget what they really were)
    2006 - 5' 4" - T-56/L-40
    2008/09 - 5' 4" - T-73/L-45

  3. #3
    Join Date
    Sep 2003
    Northern California

    As you age, you may find that your pain causes some restriction of movement anyway. I have a relatively long fusion (12 vertebrae) and was actually fairly surprised at how little flexibility I lost.


  4. #4
    Join Date
    Jan 2005
    San Diego, California
    I'd be glad to be email pals with you if you'd like. I have had 4 spine surgeries so far and I'm currently fused with no rods. Feel free to email me if you'd like.

    26 years old. Diagnosed with severe Scoliosis/Kyphosis and CMT at the age of 8. Have had a total of 6 surgeries, 4 on my spine and 2 on both of my feet. Including rod removal surgery. I am fused from T-2 to T-12.

  5. #5
    Join Date
    Oct 2005

    Something similiar


    I too am new to this forum and going through some of the similiar things. Major back pain and sometimes i can't get up after sitting in a chair. I dont have insurance right now(getting it in a month). Noticed a couple of responses to yours and was shocked to hear that someone was waiting 2 years. What if you need surgery? Isn't it dangerous to be too physical and have to wait that long? Background: 25 and married, scared to have any kids right now. Diagnosed around 14. Last appt. was last year and i was something like 50's and 60's don't remember what was what turn. I am worried about surgery and what they do, or if i need it. As a baker, starting out my career, it is hard and very physical. Anyone know of anything i can do to help the pain, other than drugs? At least until insurance steps in.

    If you want to chat -[/email]

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