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Chiari Malformation Community
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Chiari Diagnosis Any help

I have recently been diagnosed with Chiari Malformation. Still trying to let this sink in and understand what this means I am desperate for any help and support. I have been misdiagnosed for years with vertigo and migraines. My symptoms include headaches, dizziness, neck pain, ringing in the ears, and blurred vision. After much research it seems my only options are do nothing or surgery. My Neurologist has had me try topamax in the past but the side effects were horrifying. She now wants me to try Diamox. Any relief with this drug?? I am so afraid of taking any other drugs after the topamax. Side effects or any info would be much appreciated.  I will meet with a NS next week to discuss the surgery. I fear the surgery will be too much for my family as I have 2 young children. Any experience with recovery and success would be great.
3 Responses
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

May I ask what dosage of TOPAMAX are you on, and how long were you on it?...There is a 2 week adjustment time then the side effects subside...

Your DX's that were wrong ...were kinda right as you do have all of those but they are symptoms not the condition....finding the right Dr is  key....I will post names of Drs in your area for you to research...the list is not a referral nor an endorsement for those listed.

NORTH CAROLINA

Dr. Fuchs
Duke University
Pediatrics

Dr. Eric Rhoton
Carolina Spine & Neurosurgery
7 Vanderbuilt Drive
Asheville, NC 28803
828-255-7776

Michael J. Rosner, MD, FACS, FCCM
Neurological Surgery
80 Doctors Drive, Suite 4,
Hendersonville, NC 28792-720
Primary: 828 684-1076
1 Comments
i was on topamax for 3 weeks. I got to 75mg at bedtime once a day. I could not tolerate the pins and needles and brain fog. I am not currently taking any meds. My neurologist has prescribed me diamox. I will start tomorrow. Will these symptoms continue to get worse in time ? They have seemed to rapidly progress in the last 3 years but wonder if they taper off ?
Avatar universal
I was given Diamox and after 3-4 days got a lot worse, but that's me.  I've read that it does help some people though.
620923 tn?1452915648
COMMUNITY LEADER

I was not on that strong a dose...and could not get higher then where I was as I had issues with it too...but on the lowest dose cut in half worked well for me.....and at 3 weeks I really felt it was not helping me....but I was post op....nothing ever worked b4 surgery either.

Chiari symptoms cycle and flare so it is hard to know how long it will continue to worsen or if it will level off...I had times where I felt fine no symptoms and it could go as long as days weeks and months at a time...but once my symptoms began to worsen, they did not level off until after I had surgery.

Only your Dr can tell you if surgery is an option or if you are at the point it will be beneficial for you.
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