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Thread: Congenital Scoliosis

  1. #1
    Join Date
    Aug 2011
    Posts
    18

    Congenital Scoliosis

    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 it likely or even possible to be more prone to develop arthritis when you have scoliosis? The longer I go, the more it seems as though this may be an issue because of the fatigue/pain that I feel in my hips and entire back. I pop in places I have never popped in because of the rods.

    Thank you!

  2. #2
    Join Date
    May 2010
    Posts
    3

    scoli pain

    Hi, Sorry to hear you're in so much pain... Have you been to a scoli dr? Sounds like the dr you went to is a jerk. I would keep going until you find a dr that can help. also if it is muscle pain, massage therapy has helped alot. my muscles are all over the place... my chiropractor says "I'm special"... I also hear that yoga helps...
    I'm 55, 4' 8" and shrinking... started at age 11 with a 156 curve, now at 96. respiratory issues, pulm hypertension. I don't stop until I find a dr that works with me... I have an awesome Family practice dr, Heart and Pulmonary dr. I wish you luck... The Bipap s/t has been my savior... again, physical therapy, massage, and yoga, but including scoli dr . good luck!!

  3. #3
    Join Date
    Aug 2011
    Posts
    18
    Thank you for your words. Yes, actually that was the scoli dr that I spoke of. He took over my former dr's patients when he retired. I have had wonderful scoli drs and cardiologists in the past, so this is very frustrating. I do have appts set up with my family dr so that I can hopefully get a referral to someone else. Unfortunately we live in an area where there is not a lot in the way of regular massage therapy but have had some luck with physical therapy and yoga learned on my own. Apparently I too am 'special' because my physical therapist told my I have one of the top ten tightest back he's ever seen. Wonderful. The problem is finding time to do it amidst all the other stuff and when I'm not already in pain. But hopefully I can get a referral and have more luck there. I do have one question - did a dr recommmend the chiropractor? All I've ever heard from my drs in the past is that it's not for scoli patients. Did you have success with it? And what is a bipap s/t? Sorry, I'm not used to the lingo :-) I'm very glad to hear that you've found things that work for you. Thank you!

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