Hello I have AA Probably for over 20 years. I am currently fused from C3 thru my sacrum. T 1 thru T3, are not fused. I had MRSA meningitis about 17 years ago. Was paralyzed, and on a ventilator for many months. I eventually recovered ( somewhat) Have a permanent supra pubic catheter, from paralysis. Spent 16 months in the hospital, including, extensive rehab. I now can walk, with a walker, have bad bowel issues, and of course, lot's of pain. My spine surgeon, who got me out of my wheelchair after six years, did another CT myleogram and said...you just have Adhesive Arachnoiditis. He DX me with a tethered spinal cord at C6 and sacrum. He was very nice, but kind of blew me off and said go to pain MGT. Pain Mgt is a farce, when it comes to this diagnosis. nothing really helps & the DEA. prevents me from getting any decent drugs. I grew tired of everything & i
, currently on Medicare & Medicaid in AZ. I've lost all my money, get no support & seem to be getting more symptomatic. I still lift 5 lb weights, & do squats to strengthen my legs & glutes. I have th AA in entire spine, including now cervical. Entire spine is very rigid, which u might expect with all my hardware. My ability to sit up and hold my head up is very limited. mostly lay in special bed & mattresses that medicaid provides. I get free medical care., never have to pay a dime. But no one in this valley really treats my condition. get a PT referral (PT has never dealt with my disability& all the hardware) Given up on PT and i can't drive, so my life is very boring, painful & lonely. Can't really socialize much, since i can't sit up for long. I am contemplating a pain pump, since docs can't really help. I really don't have much area to put in pump, with hardware & DRG stimulator. Lately, i'm getting worse, my spine feels like it's stuck together & i can feel the nerve clumping & worsening SX. Since i can't afford Mayo, or much of any thing Do U feel i might get some relief with a pump?? Only drug that works, is Fentanyl. Worried surgery might make me worse? I try to stay positive, but it's so hard & depression takes over. My mobility is getting worse. Anyone recommend the pump? Situation & isolation makes me question living I'm single & very attractive, but no one will go out with me & hard to make friends, with my situation. guess i would like supportive friends? I'm so worried that i might end up back in a wheelchair. Sorry for the long text, i am a retired RN with a master's in healthcare. My education & experience, really don't help. Severe shortage of doctors here, in Maricopa county. Have read DR Tennant's work, but can't do most recommendations, since i'm so fused Only option, go to good ER & beg for Fentnyl. Any advice? I feel totally helpless Thanks