How to Diagnose and Treat Chiari Malformation?

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2 Answers

These messages are for mutual support and information sharing only. Always consult your doctor before trying anything you read here.
I would like more information on chiari 1 malformation please.
You won't find too much information. All sites repeat the same limited information. WHY u ask? Because no one famous has taken an interest in this disease nor funded any research!!! What u will learn here are accounts, trials, errors, and commonality amongst the MANY people suffering. U might learn without making the mistakes others have already done. Mostly, you MUST learn, know and LISTEN TO YOUR BODY. U have to be ur own doctor! God bless you and good luck!
This is true!I had surgery first one in 1999 Dr.Milhorat an Dr.Bolynes it was his first year as a intern.They removed the base of skull and put in a netting which held tilli was in wreck 2004 then again this time I was told the second surgery would be as bad it was it took me 1 mth just to walk with walker,an surgery lasted 8 hours longer then was suppose to.I got better thru the years but it's been 10 years an I've started having problems the older I get.Old symptoms and new ones too.But mainly my swallowing,not breathing in sleep,and as of today my right fingers of gone numb, tingling, and burning and it's hurting so bad but I'll I can think is maybe the numbness will be better tomorrow I hope so?!Good luck finding anything on this illness bc their right everything is old stuff I've been reading.
Is the surgery you had posterior fossa decompression?
I had my surgery in 2014 and in 2019 my headaches and neck pain came back they want me to do surgery again but I've been debating on it I'm on pain management that doesn't work I also got to have back surgery again on top of that I'm so tired of being in pain pain Drs don't seem to care how much pain I'm in I hope things get better for you
I would like more information on chiari 1 malformation please.
You won't find too much information. All sites repeat the same limited information. WHY u ask? Because no one famous has taken an interest in this disease nor funded any research!!! What u will learn here are accounts, trials, errors, and commonality amongst the MANY people suffering. U might learn without making the mistakes others have already done. Mostly, you MUST learn, know and LISTEN TO YOUR BODY. U have to be ur own doctor! God bless you and good luck!
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