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pinkp0p

Updated 11mo ago

Looking for experiences with Chiari 1 Malformation and Syrinx

im wondering about others experiences with chiari 1 malformation, who possibly also have syrinx and the decompression surgury! i had scoliosis since the age of 4 with an incompitent doctor that only focused on that and none of my other symptoms that lead to chiari until we switched and contacted a neurologist when i was 9 who got me an MRI and discovered the syrinx was so bad if they hadnt caught it as late as they did id be paralized right now, and so i had the decompression surgury and by the time i was 11 the scoliosis was gone and now (im 18) the syrinx has shrunk to the point of not posing a threat anymore and i didnt have to get them drained :)

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Danlosdude

2y

I’ve had the Chiari surgery. And she wants you to fusion. Do you have anyone you’re going to see? I would recommend Dr. Fraser Henderson in Silver Spring Maryland. He’s the best of the best
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Bulbous

2y

I’ve had decompression surgery.. I was in my 40’s and it was the worst. I’ve had a total of 8 brain surgeries from a ruptured brain aneurysm back in 1997. I had to quit two jobs I loved because of my memory problems and pain. Taking med marijuana which helps immensely with pain and sleep. Gave up my drivers license too because of my health.
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Bulbous

2y

❤️

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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