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Thread: Scoliosis Sufferer

  1. #16
    Join Date
    Nov 2004
    Location
    ND
    Posts
    2

    New member

    My son was screened for scoliosis last year at the age of 15. He was given a prescription for a brace, but he refused to wear it as he was concerned he wouldn't be able to be as physically active as he wanted to be. I'll be making another appt. to be seen and find out if the curvature has increased since then. What specific questions should I ask the orthopedic doctor at the appt? I'm very happy to have found this site.

  2. #17
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,802
    Hi....

    You might want to consider the Spinecore brace. The brace can be worn under clothing without anyone knowing it's there, and allows the patient to be as active as they want. You can read about it here:

    http://www.spinecorporation.com/

    I don't think there's anywhere in North Dakota to get the brace, but maybe you can convince your son's doctor to look into it.

    Regards,
    Linda

  3. #18
    Join Date
    Aug 2005
    Posts
    3

    Hip pain from curve

    I have curve in lower back, and found out when I was 14. It was too late to try to do any correction. About 5 years ago, I had degenative joint disease from my back curve and had to have them braced. Since then I have had lots of muscle aches, and now I have pain in my right hip. Sometimes it feels like a muscle spasm, and hurts when I am sitting. I was tolerating the back soreness ok until this new pain. I was wondering if anyone else has pain around the top of your leg like maybe from the hip, and what you do to help it.
    Last edited by she58; 08-13-2005 at 04:37 PM.

  4. #19
    Join Date
    Oct 2005
    Posts
    6

    Thanks

    I just wanted to tell everyone that this site has been such a help to me emotionally. I am almost 51 and have been in pain since the 3rd grade. Due to family tragedies, my scoliosis was not treated until I was 16. It was really to late for the brace to help and I suffer constantly now. I felt like I was alone and no one could understand what I have been going through. I have trouble with my breathing and standing, and I don't know how much more I can work. At this time, I am one of the millions without health insurance so doctors are out for the time being. thanks for being so supportive.
    Robin

  5. #20
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,802
    Hi Robin...

    I don't know if it's even a remote possibility for you, but I'd urge you to do anything and everything you can to try to find a job that provides insurance before you can't work at all.

    --Linda

  6. #21
    Join Date
    Oct 2005
    Posts
    6
    hi Linda,
    Beleive me, finding a job that offers insurance in my area is almost impossible. I am still trying, although it is hard. I am almost ready to give up sometimes. This past week has been very hard, I really was in pain with my back. It is hard to walk, hard to sit and it is so much fun climbing into bed at night...I was wishing I could sleep propped up against the wall.
    Anyway, I won't give up, I am to much the stubborm swede. I live on 8 or more motrin daily, ( I know it is not good for you) but that is the cheapest form of pain relief I can get. Anyway, enough complaining. Thanks and keep your fingers crossed.

  7. #22
    Join Date
    Sep 2006
    Posts
    4

    Hip pain from joint

    >>>She 58 said: I was wondering if anyone else has pain around the top of your leg like maybe from the hip, and what you do to help it.<<<<

    Yes, exactly where I have pain: in my lower back and left hip. Pain radiating down my legs . I also have diverticulitis and am being treated for that now. I thought this pain was all part of that until I had X-rays!

    My X-rays show osteoporosis and sciolosis. I am very new to this, I have the doctor's report but haven't seen the neurosurgeon yet. I'm scheduled to have a bone scan on 9/22 and see the surgeon on 9/25.

    I'm 63 years old! I thought this was something youngsters got?! The report says lumbar scoliosis of left convexity.

    For years I've had balance problems, can't walk a straight line even when concentrating on it. When I walk beside a person I keep bumping into them cause they're walking straight and I'm all over the place. Is this related?

    I'm looking for any and all advice. Thanks. crl

  8. #23
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,291

    Question older w/scoliosis??

    My suggestions:

    See only a doctor who specializes in adult scoliosis, don't bother with a regular orthopedic or neurosurgeon. Why?---because the scoliosis doctor with look at the WHOLE spine--not some tiny section. He will take into consideration your age, bone density posture and balance.

    Other doctors will waste your time, cost money and possible give you the wrong therapy.
    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

  9. #24
    Join Date
    Sep 2006
    Posts
    4
    Karen, I don't have a lot of choice re doctors. I live in Costa Rica and must have a doctor who speaks English.

  10. #25
    Join Date
    Sep 2006
    Posts
    4

    Question

    Whoops, forgot something. You mention balance, Karen. I've had balance problems for years. I can't walk a straight line. Is this related? I know so little about this.

  11. #26
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,291

    Balance?

    I do not know about "balance problems" you describe; what I meant was the balance in the spinal curves/posture/weight bearing on the discs---which is abnormal with significant scoliosis.

    As far as choices of doctors. Better no treatment than wrong treatment by the only English speaking doctor in the area; he might not be competent to treat scoliosis.

    Are there any SRS docs in Costa Rica? Could you travel out of the counrty? Others have had to do that to get the best care. You deserve nothing less.
    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

  12. #27
    Join Date
    Sep 2006
    Posts
    4
    Karen, the Neurosurgeon I am scheduled to see this coming Monday, 9/25, is a spinal specialist. I didn't mean to infer he was the only doctor who speaks English so I plan to see him. He is affiliated with the Intermountain Spine Institute in Salt Lake City and U.T. Southwestern Medical Center in Dallas as well as CIMA, one of the leading hospitals in Costa Rica.

  13. #28
    Join Date
    Jan 2007
    Location
    Clarkesville, Georgia
    Posts
    19

    Unhappy

    I am also thankful to have found this site. I am almost always in constant pain. I will be 36 years old on June 1. I have only known that I have scoliosis since I was 35. Just found out that 1 of my sisters also has it and 1 of my neices. I don't know if my doc knows how to treat this, going on 1 year of treatment with no relief. taking neurotin 600 mg 3 times a day, baclofen 2 times a day, and elavil at night to heip me sleep. Riding in a car and driving seem to be the most painful. And I have a long 4 hour trip ahead of me very soon...don't know what to do...any suggestions

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