Hey Dan, You know I have a syrinx also, and I can tell you i experience the pain in my gut and back, and I feel the sensation to noise just as you describe. I havent had an mri since 2004 because I know the doctors in St. Louis wont perform surgery on me unless Im losing function. The positive to your situation is your syrinx is expanding downward which means it will only cause you more pain and not interfere with function. I have heard of some people finding a neurosurgeon that will drain the syrinx, but since we are quads and a surgical mistake can result in lose of arm function most neuros wont touch us. If we were low paras I suspect neoros would be more willing to help. Its not easy living with pain everyday and people not understanding the condition. I know that doctor Scott Falci in Colorado could help both of us, but he wouldnt accept my insurance which is United Heathcare. The cost of a syrinx surgery is at least 50,000 dollars and probally would be more, so private pay isnt an option. If I figure out a solution I will let you know. Ron c7
From: Danny Hearn <[email protected]> Subject: [QUAD-L] pain-syrinx To: [email protected] Date: Saturday, May 14, 2011, 6:50 PM Hi everyone-- do any of you experience increased pain the longer you get up in your chair? I used to be able to be up in my chair for about 14 hours, but now after getting up- nerve type pain and back pain and pressure seems to grow stronger as I'm up in my chair, at times it seems unbearable after just 5 hours or so. It seems any loud sounds such as my wife calling for the dog or yelling upstairs to someone goes right thru my lower gut area ( a painfull echo like pain from loud noise ) I was diagnosed with a syrinx a few years after my injury in 1997--it was in the c-6 injury area--a year and 4 months ago the syrinx had spread a bit from c-6 to T-2. BUT I had not lost any function so they did not want to do anything. Have any of you had any similar problems ? I get worried about it getting worse and not being able to get put in or out of bed. I have a supra-pubic catheter also----------any ideas or suggestions ? thanks, Danny Hearn C-6 august 3rd car wreck.
