Guest guest Posted June 14, 2007 Report Share Posted June 14, 2007 prismed2001 wrote: > Hi, > > Just thought I'd say hello. My story is long, like most of yours- but > the pivotal point for me was my open heart surgery last year - (mitrol > valve repair -weak tissue from EDS) Everything went haywire after > that. (I thought I'd get my life back) NOT! The complications are > too many to list. > I now have the 'working dx' of CM1, SM, TC-- and I really don't know > if these or some of them are correct until (hopefully) I get to my > app. at TCI in August. > The Chiari was something I suspected since I have like practically > every symptom, and it's not mild at all- but I had 3 neuro's tell me I > didn't then a fourth tell me rather flippantly that " oh yes, you have > it, a 9mm herniation. But it shouldn't cause you anything more than a > headache. " > His reasoning was that there looked to be enough room still for CSF > flow. I guess I really won't know yet for a while, but I've been > trying to learn as much as I can. Besides, a little moral support > goes a long ways... especially since I've lost my license (seizures) > and can't walk far and live in a forest with no neighbors.... > Happy to have found this group* prism > > > Welcome to the group Prism. Having a group of people who truly understand what you are dealing with is worth so much. I am having a horrible time tonight and can't type much but I wanted to welcome you. Quote Link to comment Share on other sites More sharing options...
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