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Thread: Introduction!

  1. #1
    Join Date
    Feb 2009
    Posts
    25

    Introduction!

    I have been lurking here for so long, I feel like I should finally introduce myself. So, Hi!

    I have an S curve, diagnosed at 13. Was supposed to wear a Boston brace for 3 years. At 16 my doc said wearing the brace wouldn't help anymore at that point, and I could have surgery if I wanted. My parents left it up to me. What 16 year old is going to choose surgery for themselves? Not me! This was in the early 80's.

    Fast forward to today. I'm now 39 years old, two beautiful daughters, happily married. I have been in pain from my back for about the last 11 years and have tried pretty much everything: acupuncture, chiropractor, osteopath, naturopath, physical therapy. My physical therapist has helped me the most, I see her about once a month, when my back goes out of alignment. I'm very active, workout a lot, bike ride, go to the gym. I have given up doing things that cause me more pain: running, snowboarding, anything high impact really. I was a personal trainer for many years before I had my kids.

    I had a lot of emotional pain from having scoliosis as a teenager. I never told anyone about the brace or my back at the time, not even close friends. I was very embarrassed by it. I wish I had shared the info with friends, it would have been nice to have some support. I have always been very self conscious about my back and have really worked hard to overcome that. I guess that's why I'm saying hi on here now, It's always nice to have support.

    Anyway, I am seeing a neurosurgeon in 2 weeks. I don't think I qualify for surgery, as I believe my curves are in the 30 - 40 range. I get very frustrated from the pain though, and I hope he can offer some help. I am going to start doing yoga again tomorrow to see if that helps.

    I wanted to say hello, and thank everyone for sharing their stories on here. It is always helpful to me to read about others in my situation.

  2. #2
    Join Date
    Jan 2009
    Location
    Ames, Iowa
    Posts
    1,250
    Welcome. Glad you joined in. I did exactly the same thing for ages and then finally decided to join in. I think I've done almost all the same things you have done other than the naturalist? I think it was. Also do rolfing which is difficult but does give relief and helps my muscles unclench. I guess in a month when I have my surgery I won't be doing all those but will be concentrating on recovery.
    I also did lots to hide the curves and usually didn't mention it. In fact my neighbor just said today she had no idea there was anything wrong with my back. Many have said that and probably think I'm crazy to do something so drastic. I need to show them the x-rays!
    It will be interesting to find out from your appointment what degrees your curves are now and what the doctor says. Anyway, I'm sure you'll find lots of support and information here. Glad to have you with us!
    Janet
    Janet

    61 years old--57 for surgery

    Diagnosed in 1965 at age of 13--no brace
    Thoracic Curve: 96 degrees to 35 degrees
    Lumbar Curve: 63 degrees to 5 degrees
    Surgery with Dr. Lenke in St. Louis--March 30, 2009
    T-2 to Pelvis, and hopefully all posterior procedure.

    All was posterior along with 2 cages and 6 osteotomies.

  3. #3
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,535
    Welcome

    Be sure and let us know what your neuro recommends. Is he a scoli trained specialist? Anyway, quite a few similar stories here.
    Keep posting!
    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  4. #4
    Join Date
    Nov 2007
    Location
    Houston, TX
    Posts
    1,757

    Welcome, hikerchick ...

    Quote Originally Posted by hikerchick View Post
    Anyway, I am seeing a neurosurgeon in 2 weeks. I don't think I qualify for surgery, as I believe my curves are in the 30 - 40 range. I get very frustrated from the pain though, and I hope he can offer some help. I am going to start doing yoga again tomorrow to see if that helps.
    You'll certainly find a lot of support here from people who understand.

    Out of curiousity, when was the last time you had your curves checked? I'm wondering what leads you to believe they're in the 30-40 range?

    Curve severity is not the only indication for surgery in adults. Even a non-progressing curve < 50 - especially one that's causing severe or chronic pain and/or is contributing to degenerative changes in the spine (namely to the discs) - might be considered a candidate.

    Also, is there some reason why you're scheduled to see a neurosurgeon? As Ed mentioned, I'd really encourage you to see a scoliosis specialist (you can search the Scoliosis Research Society website to find one in your area). SRS surgeons dedicate at least 20% of their practice to spinal deformities, and many, 100%.

    I seriously doubt you'll get the same information, answers or recommendations from a neurosurgeon as you would from a doctor who does nothing but treat scoliosis. Please think about seeing one before you accept what a neurosurgeon says and before you make any decisions.

    Anyway, I wish you well. Feel free to ask any questions you might have ... they are a lot of knowledgeable people here ;-).

    Best regards,
    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  5. #5
    Join Date
    Feb 2009
    Posts
    25
    Thanks for the hellos everyone! I appreciate it.

    Janet, I will be looking forward to reading about your surgery experience.

    Ed and Pam, thank you for your response. The doc that I am seeing is an adult scoliosis specialist who (whom? ) I found on the Scoliosis Research Society website. Should have clarified that, I guess. From what I understand, he has other local resources for those that aren't having/needing surgery. I am going to wait and see what he says. I don't know if surgery is something I want but I do know I am very tired from daily pain.

    Pam, I saw a chiropractor two years ago (this was a total waste of time and $$ for me) who took x-rays and measured where my curves were. I don't have the records and don't remember exactly what the numbers were. Hence, my guess.

  6. #6
    Join Date
    May 2008
    Location
    Central NJ
    Posts
    1,956
    Hi & welcome!

    I think many of us hid the curves well into adulthood; I know I certainly did. When I told people once my surgery was scheduled, they were shocked, saying they would never have guessed I was so bad. However, AFTER my surgery, those SAME people said, OMG I can't believe how straight you are! I guess I was really more crooked looking than I (or others) thought at the time. Maybe crooked isn't the right word, I think it would be more accurate to say 'compressed.'

    I'm glad you're going to see a SRS doctor, that's the smartest thing you can do. Good luck, and let us know what happens at your appointment.
    __________________________________________
    Debbe - 50 yrs old

    Milwalkee Brace 1976 - 79
    Told by Dr. my curve would never progress

    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
    Pre-Surgury Thorasic: 66 degrees
    Pre-Surgery Lumbar: 66 degrees

    Post-Surgery Thorasic: 34 degrees
    Post-Surgery Lumbar: 22 degrees

  7. #7
    Join Date
    May 2009
    Location
    Topeka, KS
    Posts
    397
    Hello Hickerchick - welcome aboard. very nice to meet you.

  8. #8
    Join Date
    May 2009
    Location
    Topeka, KS
    Posts
    397
    Hello Debbie: I am another Milwaukee Brace wearer - wasn't that fun! Not!!! And, for whatever good it did me - not much! I'm at 80+ degrees and scheduled for surgery with Dr. Lenke in July. Hopefully I can get that moved up. I hear he's moving dates up on some of the girls who he has scheduled with him. I'm crossing my fingers.

  9. #9
    Join Date
    May 2008
    Location
    Central NJ
    Posts
    1,956
    Quote Originally Posted by RitaR View Post
    Hello Debbie: I am another Milwaukee Brace wearer - wasn't that fun! Not!!! And, for whatever good it did me - not much! I'm at 80+ degrees and scheduled for surgery with Dr. Lenke in July. Hopefully I can get that moved up. I hear he's moving dates up on some of the girls who he has scheduled with him. I'm crossing my fingers.
    I'll keep my fingers crossed for you too Rita!
    __________________________________________
    Debbe - 50 yrs old

    Milwalkee Brace 1976 - 79
    Told by Dr. my curve would never progress

    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
    Pre-Surgury Thorasic: 66 degrees
    Pre-Surgery Lumbar: 66 degrees

    Post-Surgery Thorasic: 34 degrees
    Post-Surgery Lumbar: 22 degrees

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