New to board old to chiari

hi all. mamie here. 50ish female decomped in march 03. still pain, most symptoms worse, but i manage.

i had been having more pain in my neck lately, headaches worse (is that
possible) and went to primary and requested a new MRI.
it shows i Now
have a sryinx…

i won’t see my neuro until nov 18th but have a few questions.

anyone else here develop a syrinx AFTER the brain surgery? how long?

does this have to be fixed? drained removed? procedures you have had?

my nystagmus came on 2 to 3 times a year before surgery, since… all
the time. and increased these last 10 months. my eyes are so bad now i’d
cry but it makes it harder to see.

so, any takers?

appreciation for all my chiari family goes thru on a daily basis just to be here for each other~ {{hugs}}


Hi Jamie and Welcome:

Sorry about your problems…good question about syrinx developing after decompression…I was decompressed 2 yrs ago…my eyes are actually worse now than before…but the opthamologist thinks it is not the eyes that is the problem…the H/A’s are causing the visual problems…I was recently put on a new med…zonisamide…75mg at night…I had tried topimax, neurontin…
I am not sure if they will want to treat syrinx with a surgical shunt or not do anything…other than treat your symptoms…I think it depends on where the syrinx is, the size ect…

Are you currently on any meds?? some meds have weird side effects…just wondering in case the meds could possibly be making your nystagum worse…I found out the hard way …that many docs don’t know a thing about meds!!! Sure they know what the drug rep tells them…but this chemical make up of the drug, the precautions ect…One of my best friends is a drug rep and she tells me these docs are clueless…scary!!!

Keep us posted…Good question about the syrinx after PFD…anyone elso know anything about this???

Glad you found us!!!

God Bless,

me again!!

Sorry Abby…just read what you wrote about syrinx…thanks!!! Somedays I am just not all here!!!

hi mamie

im sorry you are having these problems, it not the fun thing to go though,

you can devolop syrinx at anytime, even without chiari, they could remove it, but the best effective way, is maybe its time for a second surgery,

have a look at this site
see if it helps explain things

im here to talk when ever you need it

thanks gals, all the info is helpful!
lori, my eye doctor is the greatest! he was the one that pushed for a more thorough mri because of the nystagmus. and mine got worse after surgery.
i’ve tried zonegram. no better. i’ve tried about 12 different meds for depression/migraine/headache/i’m just sick of being sick - fix me…lol
noting really good yet. maxalt helps the pain behind my eyes the best, but like relpax, you can’t take much.
since i cant get in to my neuro till the 18th, he’s only be seeing me since a yr after surgery, i’, just looking for as much info as i can to walk in with.
thanks again!!!
i’ll check out that site jolene!~
abby, i appreciate all your support!