Hi, been a while, not been doing well under any circumstances, still looking for answers...
I had ACDF in Sept 19th 2014 C-3 through C-6 with a sryinx at C-6 through T-2 complicating things,,,,, and the surgeon guarenteed me he was an "expert in the sryinx " ok found out he isn't just a few weeks ago,, this is getting very complicated,, any input is welcome looking for help.
Pre Op prep, nurse ask's me if am allergic to the prep stuff chlorhexadine, told her most likely look at my chart am highly allergic to everything including tape, so she precedes to show me how to use this pre op stuff, ok use it get to my privates it is burning like acid I am grabbing the nearest towel and trying to wash it off, nurse comes back I am in tears call her a fuking bitch she shoves something into my IV, I am "out"
surgery is over, dr and friend in front of me, dr is saying I don't know why she is so drugged up, it is from nothing I gave her, I am screaming from the catheter, the nurse dipped it in the chlorhexadine also, told the nurse if it was not removed I would do it myself, ok got it out,,, years ago my uncle did a 13 hr surgery on my leg, said I processed meds faster than anyone he ever did surgery on, maybe I saved my own sorry ass??
ok, the rest of the chemical was never washed off, dr leaves for the rest of the 4 days I sit in the hospital and the chemical eats at me like acid, 4th degree burns going on, bad ones, not one dr had them treated, I asked them to please do something anything, I had to get the ice 24/7 to keep on them, then they brought another gal into my room with some antibiotic resistant open huge leg infection whole leg open, for real, I go to nurses station, umm humm, hello,,,, the gal in my room, they all look at me an say oh we can't talk about her because of HIPPA< i said I know HIPPA very well all fine and dandy, but there is a thing in this country that still works called FREEDOM OF SPEECH and you have 30 min to get her out of my room or move me I will be in the observatory thank you! They were wheeling her out before I got half way down the hall.....
ok get better,,,,,,post op pain continues, I get sent home with a shopping bag full of do it yourself crap for the burns, had to go to GP for care...
anyway, develope PHN pain by mid Nov through whole body, then by end of Dec, the PHN pain has made a line through entire left side of body head to toes bad intense extreme pain, on right side to but extreme on left, paralysis issues start to happen,,,,
they continue, meantime dr do nothing I have to tell the idiot what to order, nothing leaves his dam office except what I happen to get into my dam hands
it gets better, this is just a little of the nightmare!
am begging for help from any dr who will listen, litteraly, the pain is so extreme, ER can't do a thing do not know what they are dealing with, no one knows not even idiot dr
he offers to send me to a dam shrink for the pain and paralysis issues the fuker
finally after 4 months of denial afer denial of referral after referral and 1000's of phone calls later I must of called GOD is all I can think of, got approved to get my ass to Stanford finally!
even had gone to theirER in Feb and they said I needed to be seen there ASAP, and had a letter from the HEAD CHAIRMAN FOR THE FEDERAL GOVERMENT OF NEUROSURGEONS FOR NIHS AND NIDS TO GET MY ASS TO STANFORD OR UCLA AND IT WAS DENIED, MY INS IS CRAP!!!
ok, FEB 26th bug bite like on back of neck,,, March 2nd whole left side of body an face have paralysis issues go to ER, ask about bug bite
Dr says shingles, am llike WTF?? shingles, wth are fuking shingle?? never had dam shingles
put on antiviral med, follow up with dam dr evil on the 9th, took a few friends with me, had already shown all my other dr's the dam shingles
asked him what he thought about shingles, he about shit his pants, he said I will call every dr you have an tell them you don't have shingles, I said oh, really, what number would you like first? take a look I believe they are still on my neck and spine BTW, and here is the ER report ya fat bastard, ok left the fat bastard part out lol
then I asked him what he knew about internal shingles, he screamed at me they don't exist! left the room and came back about a half hour later yelling I need a shrink, I said great, ya can pay my friend here she listens to me on the phone every night now for 7 months straight! Then I said and my landlord is a shrink, and was the head shrink for the 3 largest prisons here in the bay area, I talk to her weekly would you like her number you might need it, god I was mad, I said you have let me suffer for 7 long months an not done a dam thing!
ok left there mad as hell and in severe pain end up in ER that night with paralysis on right side now and more shingles
being attacked by shingles all over body crossed side and they have not stopped
the only reason they broke out was I was fighting so hard with my dam insurance case worker as she continually harassed me and abused me daily and she cause me to have 3 bad attacks of them I had to tell the insurance they are no longer allowed to call me period I will call them from now on that was abuse on every level!
ok, get to Stanford, see new NS, he agrees something going on, he also agrees could be internal shingles, wants me to see a neuro there to rule anything else out also, so see her Thursday on April 16th, very nice helpful, get referrals to pain clinic, she offered a pain pump I declined, know the complications, but going for the nerve albations see if it helps first, did have the botox, worked awesome for the headaches and spasms so far, just mild head pain now, but the dam nerve pain an paralysis issues continue
ok sorry for the book addition here, did not plan on it,
now, looking at my MRI pre and post op, the one pre op,,,, my T spine is in OK shape for the most part, but in only 4 months, my whole T spine is in desicration it says, and does not look good and yes I have severe sharp pain in the T 4&5 area, am wondering if there could also be a small CSF leak going on that could cause this??????? I do know CSF fluid is like acid on the bones and will melt them like acid, it happened to my twin years ago from a bad epidural and went un checked for 4 years, her whole mid to lower spine had to be rebuilt completely!
So, my question is, besides being checked for the internal shingles with the disease clinic and all the complications like disiminated shingles an so on,,, should I send a note to the NS about the T spina an ask him if there could be a leak at the C-6 area is where it would be from what I can tell by looking at the films...or is desicration just good old arthritis lol?? someone please educate me so I don't look like a crazy fool thank you! confused:
