Posted on 11/02/2009 6:09:28 PM PST by autumnraine
My 13 year old daughter has spina bifida occulta (holes in the bone) in several vertebrae and has had lordosis all her life. It has never been to the degree of needing surgery, although we were warned the teen years would be tricky with puberty and growth spurts.
Today she went for her annual xray screening because she has had problems with her legs going numb if she sits in one position too long and also constipation. (She'd kill me if she knew I was posting this on the web!)
Anyway, after the xrays were taken, I asked to see them to see if there was any visible changes in the degree that her spine curved inward in the lumbar region. I thought I was looking at the side view at a glance and then realized I was looking at the full back xray. The poor girl has not just obvious Scoliosis, but I fear severe! This is coupled with the lordosis (lower back inward curve) and kyphosis (upper back outward or hunchback) of her shoulder area.
We are fearing the ever dreaded steel rod surgery and was wondering if any Freepers have had to have this done or a child with this condition. The pediatrician is sending us to an orthopedic hospital a few hours away for consult, but don't even know what to expect.
Anyway, just afraid for my daughter and you guys have always been so supportive.
I wish I could be of help, but my prayers are with you and your family. I hope you receive the answers you need.
K
Prayers for your daughter and your family. I have no idea about the treatment. Here I sit with two healthy boys and I feel a bit guilty. All I can offer are prayers.
ping for possible info
I can pray for you..
No, I knew someone 35 year ago who went through the “rod” surgery. I didn’t check to see which state you are in but I’ve heard that San Antonio has a great facility for children/bone stuff.
No advice but prayers for your daughter. My son is almost 13 and I know what a difficult age it is, even without such an affliction. I hope you get the help you need. (((Hugs)))
Search the web for information and Dr. recommendations. Find the best.
Thanks everyone. Prayers are appreciated and can do more sometimes than just doctors.
Do you live in NY?
My best friend had it done at Cleveland Clinic about 15 years ago. It saved her life. She was 52 and her lungs were being crushed. She lives with pain but would do it again in a hearbeat.
Prayers up. As someone who has multiple rods, plates, screws, and wires holding him together, I can say with confidence that the state of U.S. surgery is excellent — for now.
I am a nurse on a pre/post op surgical floor. We do dozens of Harrington rods ever year, and hundreds more spinal surgeries of every description. Without details specific to your daughter, I’m willing to give a little “general” advice”
1) Get a 2nd, 3rd, or even a 4th opinion!
2) If you do opt for surgery, GO TO THE BEST place possible for it! I cannot stress that factor enough.
3) When it comes to the spine - the earlier the better. Younger people heal better, and there is less cumulative, irreversible damage to deal with.
Best to you and your family. I will pray for you.
Thank you! I’m sure I will have an opportunity to ask an ortho surgeon, but is there an issue of ‘outgrowing’ a rod?
3 suggestions:
1. find a maximized living provider in your area, mine is:
http://www.maximizedlivingdrsullivan.com/
2. learn or find a practioner of e.f.t., details here:
www.emofree.com
3. If you’re Catholic, pray a Novena, if you’ren
not, find one or more to do so.
My advise is to speak with a competent physician not ask for advise online. My prayers are with you and your family.
What is the degree of her curve?
Right area but wrong professions. You need the advice of orthopedic surgeons, not FReepers.
You don’t outgrow a rod. Surgeons will only perform spinal fusion after puberty so there is no chance of the spine growing out of the rods. The rods act to stabilize the spine and keep the curve from progressing as well as to straighten out the spine.
Of course I do! You act like I wouldn’t take my child to an ortho surgeon and only rely on Freepers. Good Grief. I just wanted some experiences from real people in this area.
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