Scoliosis and Syrinx

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

Moderator: pmaxwell

Scoliosis and Syrinx

Postby itsme102376 » Wed Apr 11, 2018 11:47 pm

In 2010, my son, (now age 13) was diagnosed with scoliosis (C curve at 28 degrees). We already knew he had Chiari, due to an MRI done at 15 months of age, for a grand mal seizure - febrile in nature. Shortly after the scoliosis diagnosis, it was also discovered he had a significant syrinx of approximately 14mm, extending from the cervical to lumbar spine. He was 5 years old. A posterior fossa decompression was done by Dr. David Frim at the University of Chicago. The surgery was considered a success and over the next few years my son’s syrinx decreased to approximately 4mm and his scoliosis curve to approximately 20 - 22 degrees.

Unfortunately, on our last visit to the orthopedic surgeon, (he is 13 now and going through growth spurts), it was discovered that his scoliosis curve is back up to 28 degrees. The orthopedic team states that an MRI is unnecessary as - according to them, once the decompression is done, the Chiari is “cured.” They are recommending we begin bracing soon and that it doesn’t matter if he has another syrinx built up.

Can anyone please give me feedback on this? My gut reaction is that we need to be sure another syrinx is not forming. I’m not opposed to bracing but I also wonder how effective bracing would be if there is a syrinx and it’s left untreated.

Sorry so long and many thanks for any and all advice.
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Re: Scoliosis and Syrinx

Postby pmaxwell » Mon Apr 30, 2018 10:06 am

I hope you see this. Not many people post here anymore and I just happened to check today updating my password.

Have you followed up with Dr Frim with annual MRIs? Although many people have successful surgery, tonsils can drop again, a syrinx can refill or another develop. I'm not a doctor but before making a decision, if he was my son I would get an MRI to make sure.

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