Thread: New and scared
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Old 01-30-2010, 05:28 PM
Sheri_TOS Sheri_TOS is offline
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Join Date: May 2008
Posts: 236
15 yr Member
Sheri_TOS Sheri_TOS is offline
Member
 
Join Date: May 2008
Posts: 236
15 yr Member
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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.
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