syringomyelia & arnold chiari chat room
 

hello i would like to start a chat room for those of us suffering from SM & ACM and related conditions. if you would like to start one please leave a post and check from time to time to see what happens. i hope all will join in a chat room. remember you are not alone with this. i am in the eastern time zone if anyone needs to know.

I would like to join. I, just yesterday have been given the diagnosis of Syringomyelia. There was a Syrinx that showed on an MRI in '08 and I never knew it. The MRI also showed a pineal cyst of 8mm. I go next week to have an MRI to rule out the Chairi. My gut feelings is that it will come back positive for the Chairi. Thanks for starting the group.

stay in touch
 

as soon as we can we can start a room with 2 ppl but lets try to get a couple more before we start if that is ok with u, include your time zone if possible

Thanks for the quick reply
 

I am fine with that. My time zone is est

Mike thanks for getting this started. Hope you are having a good day.

Hello :)

About 4 weeks ago it was confirmed that i had syringomelia and arnold chiari. I've never felt so scared in my life! I have suffered for so long with various symptoms yet just ignored them due to thinking all symptoms were in my head. Ironically lol I have been told that surgery is my only way forward or i'll end up in a wheelchair. My surgery will include removing the bottom part of my brain and to widen my skull. Even now to type it it doesn't seem real! Please can you advise me on what to expect from surgery? i have never been in hospital or had to have anesthetic and i am honestly so scared. Any help or advice would be really appreciated.

Thanks :) xx

where are you getting it done?? good luck! I am suspecting that I have chiari.. it is very distressing :(

Hi (: I'm having it done at north staffs hospital in Stoke-On-Trent. Apparently they are the spine specialists in this area so i have everything crossed! xx What makes you think you have this? x

in absence of an MRI, I can only go on my symptoms. I'm scared that it's chiari or a vascular malformation most of all, but I guess it could be anything.

Basically it started last march after working on cars, laying on concrete and putting my head in all sorts of awkward positions. Soon after I had panic attack symptoms; trouble breathing and feeling like I was going to spasm out.. no neck feelings like today however..
Anyhow that whole ordeal came and went, although I'd have spells of feeling random body twitches under my skin and feeling on edge, and sometimes even having twitches.
In february I got intense vertigo twice over five days, which followed up with 2 months of intense chronic dizziness. Shortly after, I started feeling very strange feelings in my neck at the skull/neck area - the atlas bone more or less.. It's stayed with me and seems to be worse now.
It's a pressure sensation but not quite; feels like something is getting impinged. I also feel pain pretty much constantly in the area, and it alternates between the left or right side of the neck.
when I lay down i get get high pressure fluid flow sensations when i lay on my side, which last for a few seconds along with intense discomfort. I also get a high pitched sound... it makes my eyes flutter.. also feeling very fatigued when i move my limbs..
I should add that my doc put me on linsinopril however, which might be contributing to that at least.

Anyhow it's driving me insane, and I'm hoping I can get an MRI of my brain soon, although i think I need cervical neck as well.
I'm missing some other symptoms though.. As I said before however, the V maneuver doesn't really induce any pain.. moving my head up and down seems to make me very light headed however.. I'm always scared that 'the event' will come that will take me out:(