Hello all looking for anyone, anyone who has any hope left with this terrible disease -
adhesive arachnoiditis and giant pseudomeningocele. I've about had it. In 2013 had a doctor attempt a 3 level fusion L3-S1 (only did 2 level) ripped two holes in dura and I lost most of CSF during operation. So couple extra days laying with head down (protect the brain right?) Wrong! Spinal nerves got clumped instead right? Worst pain in my life in 5 days hospital the burning the burning was crazy. It was my nerves clumping right? yep! Sent home to recover and after 4-6 weeks pain came back with vengeance and spasms galore locking up my whole bottom half of body. Went in to see doctor he sent me off to MRI and guess what? Huge seroma he called it. Its just water left over from surgery he said. Go here and this guy will drain it and you'll feel better right away. Guess what? it was communicating with the brain and I lost all my spinal fluid again within a month or two of surgery. 9 days in ICU with massive pnumocephalus hydrocephalus. they almost cut skull open to relieve pressure.....they should have. Now I am running deficits in multiple cognitive domains. Then the pain management nightmare since 2013 is well, you know the drill getting pain meds right? Were all drug attics. good grief. There is no opioid crisis, there is a fentanyl crisis and its alive and well. and Real Pain patients can't get relief. Ok enough of my rant. My MRI just before surgery showed no clumping and immediately after showed severe clumping. spinal nerves left without CSF will clump together immediately, immediately ok?. Dr. and his million dollar defense team won suit and I was out 200k expenses and a life of chronic pain suffering confusion. Is there any hope left for folks like us? I follow Dr. Tennant best I can and it is not stopping the burn, the twitching, the crawling critters, the fog, the staggering, the itching attacks in the toes, lightning bolts into the feet, the fatigue, the drip drip drip 20 minute trying to empty bladder.. Ok so it is helping somewhat but not what I want it to be, I'm miserable most of the time and it is slowly getting worse. I feel the next few years are gonna be it before its ridiculous. Been to Hopkins and UVA and they said were very sorry we've seen big messes like this before and your only option is to go to pain management. Were very sorry for you, good bye. Talk about feeling hopelessness.