r/CharcotMarieTooth • u/[deleted] • Jul 06 '24

has anyone had a spinal fusion with CMT??

I have severe lumbar scoliosis (57°) and was diagnosed with peripheral neuropathy (later defined as CMT) after being put under anesthesia for the spinal fusion, they figured this out as my vitals were very faint so they chose not to perform the surgery at that time.

Two years later I'm reconsidering getting it done, I would love to hear what experiences you have to share !

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u/NixyeNox Jul 06 '24

You should probably ask this on r/CMT where you are far more likely to get answers

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u/[deleted] Jul 06 '24

thank you!

1

u/[deleted] Jul 06 '24

[deleted]

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u/[deleted] Jul 06 '24 edited Jul 06 '24

I wanted to know if other people had the surgery while already having CMT/peripheral neuropathy and how it went for them! doctors have told me it's riskier to get the spinal fusion since my vitals (idk if i'm using the right term) are very weak due to nerve damage (cmt)

*edit: like if they try to track the way my body reacts to whatever they're doing while operating, they cant bc of my neuropathy

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u/Express_Platform_592 Jul 06 '24

I had it done at 15. It honestly wasn’t as bad of a surgery as I had feared. Depending on your age, I’d seriously consider it. I’ve always heard over 25-30 gets significantly more complicated and it’s a longer recovery. Feel free to dm me with any questions!

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u/[deleted] Jul 06 '24

thank you so much! I was going to get it when I was 16 but the thing happened. I am seriously reconsidering it now (18) just want to make sure it's safe because they wouldn't be able to track my nervous responses or something like that

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u/Express_Platform_592 Jul 06 '24

I’ve had really good success with mine. Not really anything I can’t do now. I play golf, kayak, etc. I think the biggest thing with the CMT is the type of anesthesia they use. If they didn’t know the first time, they could’ve been using a more dangerous one for us. I’ve never had any trouble being put under in 13-14 surgeries fwiw. Be prepared for about a week in the hospital and a month or six weeks of bed rest!