Hi everyone! I had my decompression surgery in 2009. Last week I had another MR. The syrinx in my spinal cord is bigger than before so the surgeon want to repeat the surgery if the syrinx grows bigger or if I start experiencing symptoms, characteristic to this condition. Are there similar cases amongst any of you? Or did anyone already receive decompression surgery twice?
Sunette, I’m so sorry you are facing this again- I can’t imagine how disappointed you must feel. I have a couple questions… What kind of decompression did you have? Duraplasty? Did they put a plate on the back of your skull? I know you are not alone in facing another decompression, but I am sorry
Thanks for your kind words Jenn. No I only had the posterior fossa decompression surgery where 8mm of my skull was cut away as well as some of one of my discs high up in my neck. I don't know whether they will consider putting a plate in when I get surgery again. I am also concerned about the removal of the cerebellum tonsils. I've never met anyone in my country who has the same condition as I!
Sunette, I asked because there are several people, here, who were in the same boat. With decompressions it’s not always enough to just remove skull- there may still not be enough room for the CFS to flow about freely without cutting the dura. Also, some people who didn’t get the plate have had a build up of scar tissue at the bottom of the skull, causing binding and a congestion at the foramen magnum all over again. A lot of people have had a second decompression. I had my decompression about 9 months ago and I had my tonsils removed. I don’t miss 'em - although I guess I wouldn’t know otherwise! Before surgery the thought them taking a part of my brain bothered me, but know I couldn’t really care less… I just want to feel as good as I can know! Good luck!