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Craniocervical instability post Chari Decompression
My son was diagnosed with Chiari malformation and syringomyelia and had decompression surgery June 2022. The syringomyelia resolved. His neurosurgeon has been watching his head/neck tilt and has had neck x-rays taken about every 6 months. It looks like he's now going to recommend OC fusion. He has no symptoms other than decreased distance between the base of the skull and the first vertebra as measured from a standing x-ray.
Our appointment for a CTA is next week, with a follow-up after. What questions should I be asking, and are there any non-invasive treatments that we should be considering before jumping to surgery?
Thanks so much!
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I see A NUCCA spinal care chiropractor, it has taken time but between that and cranial cervicale work I am able to function so far with no surgeries. I wish you the best in all you do !!
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1 ReactionGoogle “ questions to ask doctor about OC Fusion, “ etc…
make a list with some good questions-
in our State Medical rights we have to right to politely ask the Doctor for a clearity sheet with a written letter to understand all aspects if the specific visit.
If nothing is clarified then its a waste of visit
I have been doing that and even reading research papers on the subject. It seems that Craniocervical instability is common with Chiari malformation, but not seeing much about indications for surgery. The wiki article about Craniocervical instability says that Physical Therapy is the most common treatment and that digital motion X-ray is considered the most accurate method. I'm reluctant to rely on Wikipedia, but that seems to align with what I've seen on Ehlers-Danlos syndrome instability, so long as symptoms are not severe. So I'm wondering what the difference would be.
We asked about PT after his surgery, and the neurosurgeon said that it wasn't needed and wouldn't really help anything.
He's 11 and has alot of growing left to do.
I was hoping someone with some personal experience with PT as treatment might chime in.
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3 ReactionsThis is so helpful for me too..
Two of my surgeries ended up being STAT because if me simply reading some if this info!
I have 4 decade medical journey and because im still up and around to some point its like I’ll never find out what is wrong as there are two many angles now.
I would love to condense it down to 40 minutes and get a good solid diagnosis regardless if its good or bad