I know I've been absent alot... Feeling pretty puny atm.
Still manuvering through the BAD_WORD storm that is life atm. We just heard from neurology and he is going to talk to my nsg and possibly try to get me in sooner (I go May 9). We have decided to discontinue the bi weekly lumbar punctures as they aren't helping to lower my pressure (as of friday it's 42... almost 3x the cut off and yet we wonder why I was having sooo many seizures!!) and I feel it's probably contributing to the "aseptic meningitis" and I only get relief post LP for MAYBE 12 hours before I'm back to putting Linda Blair to shame (I'm majorly projectile vomitting... If I'm in bed and don't get the trash bin in time it hits my wall, about 3 feet of nastiness). We are discussing ways to get me more nutrition (I'm going back to GI) as I'm losing 10+ lbs a month... Possibly giving the PICC another go and doing some TPN (my last PICC lasted all of 5 days before being pulled to a 102* fever and high WBC) I'm thinking this is all going to end with my CONTAMINATED bovine pericardium dura patch (MOOOOO! I've only said that it needs to come out since I had bacterial meningitis post decompression, July 2006) being yanked out and getting a VP shunt.... We've also found out that I have MAJOR papilledema (swollen optic nerves) which means that my head pressure has been high for quite some time... My ONs are off the charts swollen and have no clear defination. At least we have an answer for the constant tunnel vision that I've had for 5 years (we kept getting the depression line... Betcha didn't know it can cause BLINDNESS!!).
My mom and I have decided that I'm going to have the shunt placed and then we are going to wait a year after my pressure has stabilized to see someone about my cervical instability... I know that a cranial cervical fusion is in my lifetime but I really want to put it off for as long as possible (when you fuse your spine, because it is a flexible joint, the areas above and below the fusion become more unstable and since I have instability throughout my entire spine that's an issue) because I'm hoping that in 5 years time the surgery will be a bit more evolved. I'm so scared of ending up with a totally fused spinal column by the time I hit my 30s (which would mean no more really cool party tricks). If you are still wanting to sell your jewelry and donate some of it I think it would be neat to donate it to the "Ehlers Danlos National Foundation" (the collegen disorder that I have which is why I have so many health issues).
Hope all are doing well... Or at least better than me!
Edited by Redhead, 22 April 2011 - 10:18 AM.