Guest guest Posted May 23, 2008 Report Share Posted May 23, 2008 Alax, I don't know if this will help you or not. BUT, my very first neurosurgeon (who I think walks on water LOL!) told me back in 1991 that the surgery only stops the progression of the symptoms. It does not cure. There is no cure. I went 20 plus years with severe symptoms because the doctors back then had no idea what I had. Back in the 70's there were no MRI machines. I almost went blind before getting help and finding out what I had. (Chiari, hydrocephalus, PTC) I have had 2 decompressions and a VP shunt and 6 shunt revisions. My second decompression was done by a chiari expert. I am worse now than I was before only because I developed a blood clot on my brain stem and now have permanent double vision. I think that due to there not being alot of information on chiari back then and me not getting treatment sooner is why I am no better than before my surgeries. My opinion is the sooner the surgery the better. BUT that is only MY opinion. I can understand your Mom's worry. Every Mom worries about their children even if they are adults. But you must do what is best for you. Try to explain that to her and let her know that you love her but have to do what is best for you. This is the most I have posted since being here! LOL! Take care, Debi chiari, hydrocephalus, PTC, kinked brain stem, scarring, collapsed R ventricle 2 decompressions, VP shunt, 6 shunt revisions. Posted by: " Alax " viewfromthepenthouse@... alaxld I'm wondering, for those of you who had the decompression, at what point did you decide to have surgery? Was it a year after diagnosis, 10 years? Was it when you lost function or were in intractible pain? Quote Link to comment Share on other sites More sharing options...
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