Hey sheri sorry to scare you but that is what mt doctor said triggered it because all symptoms showed up and got progressivly worse right after his birth.I do not like to hear however that the neurosurgeon did nothing for you. That leaves me in complete fear that mine will do the same and leave me to deal with this pain.I did however give birth to three children previously without any problems so i am not quiet sure if my doctor is correct,All i know is i am declining quickly and i do have good days without pain but most are bad with pain.I am on neurontin now and it seems to help some and an antidepressant because i did not want to get out of bed and care for my baby and that is not me at all.Were you diagnosed with syringomyelia?? Do you have to go back and get MRI's done to see if it has grown?? Please let me know and i am sorry to have scared you.

No, you didn't scare me. I'd rather be prepared for what can happen and openly discuss it with the doctors. I can only imagine what you're going through right now. Your situation sounds far worse than I was when I was first diagnosed. My syrinx is small and monitored. If it was expanding then I think they'd be more concerned. Due to the location, they don't like to operate unless it is causing serious problems because it involves cutting into the spinal cord (not good but if it provides some symptom relief then it's worth the effort). This is why I wouldn't let just any neurosurgeon touch me if this was causing serious problems. I think your situation is different than mine and needs to be addressed now. If you don't like the answer you receive from the 1st neurosurgeon, get a 2nd or even a 3rd opinion. This isn't something to mess around with.

Since I've had this problem since at least 2003, I've grown "accustom" to it. I know it could get worse and when it does, I will be seeking out the experts - not a local neurosurgeon but one who deals specifically with this (the Chairi Institute in New York or elsewhere) quite frequently.

I also have a problem in the brain so I get brain MRIs every couple of years to check for growth of that cyst, too. The brain cyst isn't Arnold Chari Malformation as it isn't located at the base of the skull. This cyst is also something that they prefer not to do anything about unless it becomes too symptomatic. Given both cysts along with my other problems, I'm a frequent visitor to MRI facilities.

Vicky i also placed a copy of your first post on the -
Arnold Chiari Malformation & Syringomyelia forum -
http://neurotalk.psychcentral.com/forum71.html


so check there for replies too.