[mikegiar1]

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.

[pjdk2012]

Originally Posted by mikegiar1

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.

[mikegiar1]

Originally Posted by pjdk2012

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.

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

[pjdk2012]

I am fine with that. My time zone is est

[pjdk2012]

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

[Miss Holly]

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