CM/SM child/cervical fusion worsened scoliosis

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CM/SM child/cervical fusion worsened scoliosis

Postby lpepitone » Tue Jan 24, 2012 8:30 am

My 6 year old daughter was decompressed three times by a local neurosurgeon. He removed so much bone that she developed a severe cervical kyphosis. In November, she underwent several grueling surgeries to fuse her down to C6. She is a complete holocord syrinx. Now, just a couple of months later, her scoliosis has worsened drastically and quickly. We have an appointment today with one of her orthopedists to measure and try to see what to do as the scoliosis is moving the halo. Her sides hurt constantly and the she is having headaches that we think are caused by the shift in the pins. We just can't seem to get ahead of these problems!! I barely have recovered from the stress of the fusion and what was best for her CM/SM, and now I have no clue where to start with the scoliosis and what is best for CM/SM/fusion... She can't be braced as the curve is very high and she has a kyphosis as well... We obviously don't have a local neurosurgeon, and I am guessing that if the scoliosis has progressed, as were are fairly sure it has, an MRI will be needed to see about flow. I don't know what else would cause the scoliosis to suddenly go haywire? She has been having a gradually worsening curve, but over 3 years it didn't do as much as the last few months. We liked our team at Cincinnati Childrens, we like our spine doc at New Orleans Childrens. I am now terrified of doctors that claim to know what is best as we found out that is not always true. I know we have to stop the curve, it was already 60, but what if stopping that worsenes yet again something else? So question is, is there a doc out there that knows everything :) Is VEPTR right for SM/CM kids? What other types of options are out there for SM/CM ?
Lisa Pepitone
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Re: CM/SM child/cervical fusion worsened scoliosis

Postby whiteangel » Tue Jan 31, 2012 7:59 pm

I'm sorry about what you are going through...i know it's hard but please keep up with the brace for scoliosis n kyphosis...I live with it everyday...I'm in a bad way can read my story on my blog, it's kind of long...your in my thoughts...
WhiteAngel, Low Grade Astrocytoma Spinal Cord Tumour @ C-1 - T-6 surgery back'n 1970 @ age 4-1/2 Brain Stem Cyst, Kyphosis, Scoliosis, Heading down the quadriplegia road, unfortunately.
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Re: CM/SM child/cervical fusion worsened scoliosis

Postby drummergrl » Tue Mar 20, 2012 6:48 pm

I really feel for you and your daughter. I wore a back a brace (well, 3 types of back braces to be technical) for scoliosis from ages 8-18, was decompressed for Chiari at 16, got diagnosed with Syringomyelia at 16, and then had a spinal fusion (T3-L4) for scoliosis when I was 17. I understand your predicament. My orthopedic surgeon and neurosurgeon struggled with the decision on whether or not to keep bracing me because the SM seemed to make my curves progress into the high 50* range regardless of the bracing. We stuck with it for another year after I was decompressed only to get fused anyway.

As I'm sure you know, there's no right answer. Everyone's case is different, every kid with scoliosis/SM/CM will have a different battle. As for me, I'm glad I chose to brace as long as I did: I now have the sincere peace of knowing that I did everything possible in regard to non-invasive procedures before finally having the fusion. For your daughter, perhaps going ahead with the fusion (especially the VEPTR) will be her best possibility to move past these conditions. I, too, was treated at Cincinnati Children's, though my orthopedic surgeon is a bit further north. If you would like to know more about who I saw, feel free to PM me. I feel as though I lucked out with a fantastic pediatric ortho- he understood CM/SM and he worked with my neurosurgeon at Cincy Children's to make sure the two of them were constantly on the same page.

Anyway, I'm rambling. Like I said, I really do understand your predicament. PM me if you'd like any other information, and good luck with these decisions!
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