okay, here goes. (i think this is where im supposed to put this...if not, let me k ow where to post plz).
let me begin my novella by saying it feels so strange to share my story. i usually try not to share too much as people find it depressing or i just get tired of answering the same questions over and over (by well meaning individuals of course).
k...i was diagnosed with pseudo tumor cereberi (spelling?) in 07ish. i also had meningitis 3 times shortly after the diagnosis. i had several lumbar punctures to relieve the pressure from the pseudo tumor. i kept asking if there wasnt some test to confirm the diagnosis, as i didnt feel this was an accurate diagnosis, i am not the typical candidate. i was told there is no test with the exception of the high intracranial pressures. and no cure except diuretics to manage the fluid and lumbar punctures to drain the fluid when it became excessive and the pain was unbearable.
A shunt was also mentioned, but this was shortly after diagnosis, and was not an option at the time or even an avenue i wanted to go down at this point. i developed meningitis for the second time and lost my job. (i know, i know...it was deemed unlawful termination. but i didnt go back. just got my unemployment, but lost my ins.).
I needed another lp for high pressures and with no insurance i went to the VA. did you guys know the VA is a teaching hospital? i certainly did NOT. i tried to go to the neuro clinic, they told me to meet the doc in the ER and let the ER staff know i was there and what i was there for. i did. made no difference. my son (21) and i sat there all night as though i were just checking in to the ER for an emergency.
I was finally called back. a youngish woman came in with another young man (both students, residents of some sort from the university hospital across the street i later discovered). the woman was to perform the lp. i was nervous about
her doing it and tried to ask her questions.she tossed the little computerized signature pad at my lap\on the bed. she was short with me and said "im on call, sign it or dont. ive got other patients to see".
I signed, what are ya gonna do right? so im curled up on my left side and she starts pokin...and pokin...and pokin...and answering her pager and returing the call with the phone on the wall...and pokin...and im screamin at this point, begging for her to stop and for God almighty to help me. im still not moving because i remember hearing somewhere if you move during an lp you can be paralyzed. so im crying and begging anyone in earshot for help, but not moving. and shes saying "ive almost got it". my son finally spoke up and said " my mom wants you to stop". she did. she pulled the needle\catheter out and said "we'll give it five minutes and try again".
I quickly told her she was never coming anywhere near me agin as i came off of my side and out of the fetal position. i have been in pain non stop every second of every minute of every day since she swirled that needle in my back. (on her last poke when she was looking for the fluid space she actually 'stirred' the needle for lack of a better word, while it was in my back.
The VA tried to say i was okay at first. the woman tried to say she only poked me once. as it happens i ended up going to a local ER for the pain later that day. they noted several puncture wounds. i was diagnosed with nerve damage. no ins meant going through the VA. after many, many ct scans, mris, nerve conduction studies, bone scans, x-rays...shoot, tests i cant remember, pronounce or spell the diagnosis was/is radiculopothy (spelling) and foot drop from the lp.
I apparently also have scoliosis, that comlicates things now but was never an issue before. i now have insurance (ssd), and with all the complications from the back...blood clots in my legs (sedintary life), lung problems (sedintary...i smoke, scoliosis with the nerve and cord damage, i hunch badly...causes bad neck pain), at any rate, my PC sent me to see a neurosurgeon. this great guy dent me to do an eye test, a swallow test (i have problems swallowing), and and mri w/contrast (one of oh so many). turns out i was right after all. i do NOT have pseudo tumor after all.
What i do have is a pretty serious case of arnold chiari maolformation. it kills me. if someone would have listened to me long ago when i said i didnt think i had pseudo tumor, i would never have had the lp that ruined my life.
I do have a wonderful PC now. he takes very good care of me. i was a pm patient, but i wasnt happy there. they were just continuing the same prescript
ions my PC had me on when he referred me. i was a patient there for over 1.5 years. did a pump trial last. also did a scs trial. the electrode was sooo large on the trial it was hard to gauge real relief.
They said my spinal canal is narrower than the average? i also fell at home and the electrode was pulled down about
a cm. was just a really rough test. i will say it took away the pain in my legs. but thats not my big issue. hell, i didnt realize how bad my legs hurt til they stopped hurting!
My pc has had me on hydrocodone with methodone. works better than nothing.i left the pm clinic and went back to my pc to get a referral to a different pm clinic.
At my last visit my pc switched me to fentanyl patches with hydrocodone for bt pain. he was going to give me morphine for bt pain, but ive found morphine gives me an upset stomach and makes me too sleepy.
Ive been on several different pain meds over the years. was really interested in the pump, but my trial didnt go well. only lasted a few hours, and they only adjusted the medicine once. my pain was never under control during the trial. would love to hear someone elses experience.
Hi Hoop, I have made some paragraphs in your post to make it easier to read. Some of our members have tracking problems when reading. Thanks.
Post Edited By Moderator (straydog) : 3/27/2015 10:57:48 AM (GMT-6)