Chiari Online Support Group

Seeking Advice

Hello! I was diagnosed in September. 7mm Herniation, No Syrnix and CSF flow is fine.
My Chiari specialist told me we are holding off on surgery because she thinks it is only a 50/50 chance that my symptoms would be fixed. I dont get headaches. I just get numbness, twitching and pain all down the left side of my body. Especially in the face/nose area. I am no doctor (not even close), but it seems that a facial nerve is compressed and ‘decompression’ surgery would help! I dont know though.
It seems to flare up more often than ever now. I also get a bad taste in my mouth. Does this sound like Chiari? My MRI’s only showed Chiari so I should be reassured. I just do not see a lot of people talking about numbness, tingling and twitching. Is there any way to alleviate this in the meantime?
Also, do you think I should go back to her? She is a NS who is a co-founder of a Chiari clinic, so I am certain she knows what she is talking about. SHould I just go straight to her and discuss surgery or should I see a Neurologist to see if it is something else. I am struggling on my bad days. It is NOT easy! Thank you all!

I had the surgery last May.
i was experiencing numbness and tingling and severe pain along with some more serious issues affecting breathing.
I was housebound and had been for 1 year.
I can say that so far my surgery was not a sucess and it has made the numbness and tingling worse.
I now have horrendous head and neck pain that i didnt have before surgery.
Pre surgery my symptoms were full time 24/7.
I had no life. i couldnt even handle more than 1 friend visiting at a time as the head movements involved in communicating would cause me agony even though i tried to supress them.
There was no such thing as a “flare up.” as you say.
i imagine that they would not operate on you if you have times when you are symptom free as you can end up ( like me ) worse off.
I know its not what you wanted to hear.
i suggest keeping a diary of your symptoms.
duration and pain levels etc
My surgeon told me that the people who say “sometimes when i do this it hurts” are the ones that surgery doesnt help.
Surgery is a really big deal and no surgeon wants to make you worse.
They wont want to operate untill either you have a syrinx or you are not able to function anymore
ie not able to lool after yoirself, work or socialise.
All the best

Chiari surgery is not something to be taken lightly. There are many risk factors and no guarentee. In my case I went for nerve blockers, rhyzotomy etc. I went onto pills to prevent the terrible headaches, rather than taking a pain medication. We held off surgery untill it was no longer possible due to extreme pressure inside my head - around 25 years after diagnoses. I have had a successful decompression surgery and seldom suffer any pain. You need to hold off surgery as long as possible. Look at alternative treatments, especially as you are not in pain.