I depseratly need this VP shunt I'm trying to finally get what I need to get releif and yet I still have to keep proving over and over this is what is needed. and I am so damn tired. I've been diealing this a pain nobody would imagine for every day all day for more that 12 years. now I finally have an answer, and a practical "cure" and I TILL have to prove over and over agian I ned this so y brain can recover and not conintuing to decline nuerologically, Oh ad not lose little vision I have left.
Hi I've known for a while (about 3 years) I had some sort of incrainal preasure issue. I also have a Chairi 1 malformation that was decompessed in a emegent fashion and was and is pretty severe. Trail by fire I have now had 7 surgeries 3 around my brain and the other 4 were unrelated (well the bladder stimular is somewhat related to the issues)
Anyway for many years I have been taking Dimox at the highest dose my body can allow before I have issues with electrolite embalances,
I have done every single intervental option evaual, seen for 4 years a Migrain specailist and have gotten the Miagrain aspect of my headaches resonable but after three years he had no other ideas and was forced to suggest I see a pain mangment specailist to prosue narcotic mangment (something I spent 9 of the past ten years trying to avoid, Now I'mtighteda nd dependnt on narcotics to getthoug the day.
I've had 11 LP. in which case what's next? having taps every 2 months indefinatly? how si THAT safer than a totally incluseds over the past 5 years but the past 5 have this past year and one before was "High" by formal definitions (meaning opening preasure of 20 or higher) this year with dimox daily I had 26, 23, 19, 21, and 31(the three in the middle were done only 5 weks apart while the other two were months apart. he has pulled a TON of fuild each time as much as 35 cc "just to pull me down from 19 ro16, I have also found my idal preasure is 14 to build my pain doctor pegged my issue the first time he saw me. and aid I have spuedo tumor curbri. which was likely misdiagnosed years ago because I have a prexisting vision diorder I was born with, my vison has gotten much worse over the years but nobody bothered to look at my brain being thesause, however each time they drain me my vison improves drastically (for me anyway) instantly among other neurological dfacits that have devoloped over time improve for a short peroid then begin declining
WHAT more proof you you NEED? frankly I'm tired of being in so much pain I had to take myself inot getting out of be for 30 minutes this morning not because I was not awake but because I knew if I moved my pain would increase. this is a huge quaoity of life issue has ben for a while now. I NEED this 2 doctors agre
BUT due to compexity of my case and insurenc issues I had to go out of they system to get a neurosurgonto do it. but now i'm being told by the neuo surgons that are now telling me 5 taps isn't enough to "ensure a shunt is what I need" and that I need to spend three days in ICU with a ICP monater in my head. my faar is it won't be "high enought for them (likeing black and white cases) to see I need this even though I might be in the grey zone.
they were talking next steps in the office if this wasn't right I turned to him and said WHAT is net step? what have I NOT tried? my pain magment wasn't by choice is just enough to get by. it was to rpevent me from tnot comminting sucide.
I don't give crap about revisions I don't even worry about the surgey to put the damn thing in. I've had enough time under to knift to be cycical so. even I the chunt only lasted a year before needing revision I wouldn't it would still be wroth it. of course I'm hoping for a healthy chunt that lasts 10 years.
its so sad that I'm BEGGING for this.
Am I'm alone?
any advice for me?
just wordd of incuragment? thanks