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Chiari Malformation

674 Views | 3 Replies | Last: 1 mo ago by TH36
TH36
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Curious if anyone on here has known an adult who's had surgery for this?

Long story short, I've known I've had one since I was about 12-13. Didn't know that mine was 4x the length they usually operate on…mines 25mm below where it should be. I don't have any terrible symptoms but after seeing a neurosurgeon the other day because of going to an ENT about hearing problems I've had since 2019 he explained how bad mine really is.

He's of the opinion of if I'm functioning then I don't necessarily need surgery but that there are things that can be damaged is untreated. I feel like after seeing him the other day I'm noticing things about how I feel that I've just blown off normally and now I seem to be hyper aware of these symptoms. Could be just cause I'm stressed about the possibility of surgery.

I'm still waiting to hear back from them about the 3 MRI's I had last week to take a better more updated look from the MRI I had on it in 2002. I've read through the results as best as I could being a plumber…..not a doctor and I see some things that seem good and some that have me worried. They detected what looks to be lots of degeneration in several sets of disc while looking at the Chiari and my spinal cord.

Just curious if anyone has any experience with all of this. Surgery seems to be pretty straightforward with a 2 month recovery time in which I probably wont be driving to work everyday from what I've read. Can sometimes take longer or shorter.
txags92
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AG
Cole97 is who you want to talk to. She had surgery to fix hers quite a few years ago. Don't know that she posts much on Texags any more, but you might try PMing her.
KidDoc
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AG
Heck a plumber should be near ideal to deal with this, it is basically a plumbing issue!

If you are 40+ I would not worry about degenerating discs, that is part of aging and nothing to do with the malformation. Think of it like an aging gasket. If you don't have any weaknesses or tremors and no syringomyelia in the spinal column or increased ventricular size I doubt anyone would cut on you.

Every AC operation I have seen as a doc has been on kids with clear symptoms-- bowel issues, scoliosis, severe headaches with increased intercranial pressure, etc.

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TH36
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I turn 36 this month but have done manual labor since I got out of high school so I guess it's not that crazy to have some degenerative stuff going on. I'm also tall and have terrible posture, and flat feet…probably hasn't helped anything.

Neurosurgeon called me yesterday and said everything looks fine still and the sphrinx (spelling?) actually looks smaller now. The trapped cerebral fluid I had.

Going to meet with them again just cause I have a bunch more questions.
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