BTW…I’m still looking to have the surgery. I live in Florida. Who did your surgery and in what State. I assume he, or she, did a great job, right?
Mary Jane
Maryw, if you tap @Ktbelcher avatar, you can see what state she lives in and lots more information about her.
BTW, profile information is only visible to members!
One of my top go-to places for Chiari information is Mayfield Clinic’s website: Chiari signs, symptoms
This site notes balance and gait issues as among the top effects of CM1. I’m so sorry to hear that so many people have had their physicians, even neurologists, say it couldn’t be the herniation. How terribly invalidating that is for anyone dealing already with so many weirdly diffuse, hard-to-describe symptoms and this scary diagnosis!
I’m still in the process of integrating the diagnosis of CM1 (incidental finding on imaging for a frozen shoulder) with all of these things I have experienced over the years but that I figured must just be kind of normal. My balance issues and vertigo are not nearly as severe as what some of you are living with (my heart goes out to you), but it is helpful to finally know that stumbling too often and feeling kind of dizzy with almost every movement has a source. I am very interested to hear some people say that the surgery has helped with those issues b/c the neurosurgeon I’ve been consulting with says the decompression will only help with headaches and not with the balance and gait.
BTW, here is another one of my favorite places for Chiari info: Chiari Malformation
Why does Ohio seem to have the monopoly on Chiari know-how?
While surgery does not necessary resolve balance and dizziness issues, it does relieve the extra stress on the brain. Post-surgery, it is much easier to integrate and relearn vestibular processing. It does not “magically” happen with surgery but needs to be addressed through appropriate vestibular process therapies. The neurosurgeon will not help you with this. Will need to find other healthcare professionals skilled in this area.
Immediately post-surgery my dizziness worsened and it took awhile to find the right people to help. Lots of quacks out there with a “vestibular therapy” shingle on their website!
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This is very helpful info. Thank you!