I asked previously about the hospital, but I would like to ask about my child since reading your posts you all seem to have excellent well-informed opinions. I have a daughter, 15 1/2, adol, idiop. scoliosis diagnosed at 12, wore her brace 20 -22 hours per day for about 20 months until her growing stopped. She is atheletic, active, has a great attitude, wonderful grades, works her tail off and sadly, two positive change xrays in a row over the last 18 months. She has 2 curves and a small developing neck thingie. Her lumber curve of about 30 or so is compensatory, but her thoracic curve is 46 degrees (moved from 41 to 46 in 10 months). Her gait is changed noticeably, more of sideways walk, looks like a big old limp. She's never had back pain, but for 2 years her left lung has been compromised, her asthma has gotten worse, and she has had pnuemonia 5 out of the last 6 years. Increasingly she experiences hip pain on the left after running hard and she uses a lift to help with the functional inequality in her leg length. She has a very narrow rib cage so her rotation and curve in the spine are gradually shrinking that left lung and the space for her heart.
So that's the scoop. At our hospital and with Dr. Policy the recommendation is at 50 degrees, but she stopped growing 18 months ago and the curve progressed about 8 degrees. He said its the 2 positive xrays plus her history that tell them that she is in that tiny tiny part of the population that has a curve that just doesn't want to seem to quit. Next year is her junior year, so its either surgery this summer or next summer.
Here's what we have done, researched the hospital and Dr. Policy. Calls in to pediatricians, neurosurgeons and spinal docs have provided a second opinion appt at Stanford, and confirmed that Dr. Policy is not just a nice doctor with a great attitude (never pushed surgery ever before), but he is well-respected. We also have a pulmonary doc lined up, cranial sacral work lined up (she already received some plus jin shin and acupressure over the last 3 years), and we have talked to her school and the teachers. Everyone is okay with surgery this summer or next summer or not at all.
Everyone except us. It's hard to look at her and think she needs surgery, yes she has a rib hump, yes its tough for her to breathe sometimes, but she looks great. But on the other hand, its been progressing in the brace and outside the brace for 3 years since we found it in the mid 30's range (thor. curve) and it doesn't seem to stop. If she already has lung involvement and hip pain and leg length inequality, how long can we wait? It seems like its about more than degrees of curve, but also about what other systems are involved???
What do you guys think?
- Martha
So that's the scoop. At our hospital and with Dr. Policy the recommendation is at 50 degrees, but she stopped growing 18 months ago and the curve progressed about 8 degrees. He said its the 2 positive xrays plus her history that tell them that she is in that tiny tiny part of the population that has a curve that just doesn't want to seem to quit. Next year is her junior year, so its either surgery this summer or next summer.
Here's what we have done, researched the hospital and Dr. Policy. Calls in to pediatricians, neurosurgeons and spinal docs have provided a second opinion appt at Stanford, and confirmed that Dr. Policy is not just a nice doctor with a great attitude (never pushed surgery ever before), but he is well-respected. We also have a pulmonary doc lined up, cranial sacral work lined up (she already received some plus jin shin and acupressure over the last 3 years), and we have talked to her school and the teachers. Everyone is okay with surgery this summer or next summer or not at all.
Everyone except us. It's hard to look at her and think she needs surgery, yes she has a rib hump, yes its tough for her to breathe sometimes, but she looks great. But on the other hand, its been progressing in the brace and outside the brace for 3 years since we found it in the mid 30's range (thor. curve) and it doesn't seem to stop. If she already has lung involvement and hip pain and leg length inequality, how long can we wait? It seems like its about more than degrees of curve, but also about what other systems are involved???
What do you guys think?
- Martha
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