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Thread: congenital scoliosis questions

  1. #1
    Join Date
    Aug 2011
    Posts
    18

    congenital scoliosis questions

    I am wondering if there was anyone with experiences concerning 20+ years after rods, persistant pain, and what seems to be shrinking. I had my rods put in at the age of 7, but it probably would have been earlier had it not been for the need to treat my congenital heart defect first. I had another at the age of 9, where, to my understanding, they took a rib and fused it in front of my spine because it began to curve a different way once the rods were in. I am unsure of the exact degree of my curve, specifics about my fusion sites, and such, and I have had a very hard time finding anyone who had these things done at this early of an age. I am now 29 and a mother of two, did not experience any difficulties with labor due to the soliosis, but I often, often am in pain. I have had herniated discs and was recently told I probably have degenerative disc disease, but my doctor really did very little, spent at most twenty minutes with me, and said try some PT. I have, and I do these as often as possible, but I still have pretty constant pain. All I am told is basically 'you're going to have pain. you need to deal with it'. It is getting harder and harder to deal with and my husband has noticed more and more the effect it has on my gait, the way I wear through shoes, and I have even lost height. Sorry for all of the background, but some questions I have are:

    1) Is shrinking so soon normal with scoliosis? I know it will happen with aging, but I'm already short and uneven a lot and don't need help.

    2) Does anyone know if orthotics or any specific types of shoes really help? I have found I tend to walk with my right foot pointing out, and the wear on my shoes, especially the outside of my right heel, is horrendous.

    3) Is anyone familiar with Sean Jackson of KUMC? I was originally with Marc Asher, but got transferred to another dr when he retired. I have always been reluctant to go (went about 15 years without going) because it has always seemed if I went there was more that had to be done, but I know I need to. I just am not happy with my current orthopedic dr.

    Thank you!

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,794
    Quote Originally Posted by heatherf View Post
    I am wondering if there was anyone with experiences concerning 20+ years after rods, persistant pain, and what seems to be shrinking. I had my rods put in at the age of 7, but it probably would have been earlier had it not been for the need to treat my congenital heart defect first. I had another at the age of 9, where, to my understanding, they took a rib and fused it in front of my spine because it began to curve a different way once the rods were in. I am unsure of the exact degree of my curve, specifics about my fusion sites, and such, and I have had a very hard time finding anyone who had these things done at this early of an age. I am now 29 and a mother of two, did not experience any difficulties with labor due to the soliosis, but I often, often am in pain. I have had herniated discs and was recently told I probably have degenerative disc disease, but my doctor really did very little, spent at most twenty minutes with me, and said try some PT. I have, and I do these as often as possible, but I still have pretty constant pain. All I am told is basically 'you're going to have pain. you need to deal with it'. It is getting harder and harder to deal with and my husband has noticed more and more the effect it has on my gait, the way I wear through shoes, and I have even lost height. Sorry for all of the background, but some questions I have are:

    1) Is shrinking so soon normal with scoliosis? I know it will happen with aging, but I'm already short and uneven a lot and don't need help.

    2) Does anyone know if orthotics or any specific types of shoes really help? I have found I tend to walk with my right foot pointing out, and the wear on my shoes, especially the outside of my right heel, is horrendous.

    3) Is anyone familiar with Sean Jackson of KUMC? I was originally with Marc Asher, but got transferred to another dr when he retired. I have always been reluctant to go (went about 15 years without going) because it has always seemed if I went there was more that had to be done, but I know I need to. I just am not happy with my current orthopedic dr.

    Thank you!
    Hi Heather...

    Just an FYI... once you're talking about revision surgery, it really doesn't make any difference what classification of scoliosis you have. (Saying that in case the thread title scares others away.)

    It is very common for people with scoliosis to lose height. As far as I know, there is no research into whether orthotics help with scoliosis. Even if there was, there'd be no way of knowing if they might help you, short of trying them out.

    You might want to check out Drs. Lenke and Bridwell in St. Louis. They specialize in scoliosis revision surgery.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  3. #3
    Join Date
    Aug 2011
    Posts
    18
    I keep hearing Dr. Lenke's name but had never been familiar with him. Up until now I have only dealt with drs at KUMC, and they have been so awesome. They have some of the best ortho and cardiac specialists there, but I'm just wondering if I may not have to find someone else now that my trusted orthopedic surgeon is no longer in practice. Thanks!

  4. #4
    Join Date
    Jul 2011
    Posts
    535
    Quote Originally Posted by heatherf View Post
    I keep hearing Dr. Lenke's name but had never been familiar with him. Up until now I have only dealt with drs at KUMC, and they have been so awesome. They have some of the best ortho and cardiac specialists there, but I'm just wondering if I may not have to find someone else now that my trusted orthopedic surgeon is no longer in practice. Thanks!
    I've heard so many amazing patient feedback about Dr. Lenke that I'm traveling from Atlanta to see him. There was a top scoli surgeon in Atlanta, but he retired too.

    Warmly,
    Doreen
    44 years old at time of surgery, Atlanta GA

    Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
    Post-Surgery curves ~10 degrees, regained 4 inches of height

    Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
    2 rods, 33 screws, 2 cages, 2 connectors, living a new life I never dreamed of!

    http://thebionicachronicles.blogspot.com/

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