Hello, im Erika from Florida( kinda). I found this site hoping to connect with other Fibromyalgia, CSF leakers, MTBI survivors.
i have a saga but will try to spare you the long story, we all have long stories :-). in 2011 I had Transsphenoidal surgery to repmove macro adenomas, the tumors had breached the hypothalamus, so simple surgery turned into Brain surgery. i was in ICU for 8 days with uncontrolled Diabetes Insipidus and pain. I did not recover well and developed CSF leak near my lumbar drain site. 2 years latter this was finally reaired by Dr Schivink at Cedar Sinai in California. I still did not improve to normal and another smaller leak was suspected, after several Blood patches i was put on a med that lowered crainial pressure which allowed the leak ( wherever it was ) to heal. leak fixed itself after about four months of diamox.
So at this point i should be good to go and recover fully. But after a few months of PT i developed what i now know was fibromyalgia. Mayo in Jacksonville Dx this last December 2016.
my current symptoms are grouped into two. One i named Weezy and the other set of symptoms i named Bruce. weezy is more fibro and bruce is more brain centered from long term low cranial pressure, and fluctuations in ICP, possible ICH( intracranial hypertension).
anyways, looking forward to connect with folks.
Im going to attend the Jacksonville fibromyalgia 3 week program and hope to find others who may be going also.
thanks
Erika

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