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Arachnoiditis: Looking to talk with others
Spine Health | Last Active: 3 hours ago | Replies (404)Comment receiving replies
I have severe adhesive arachnoiditis. Am fused from C3 thru my sacrum ( post MRSA meningitis) retired RN, was doing ok, bur now severe intractable pain. I am on Medicare & Medicaid (secondary) Have looked for a treating physician, for years....no luck. Severe shortage of specialists, especially neurology. Most won't treat it, won't read Dr Tennant's information Been on lot's steroids with flare ups. Since DEA controls what can be prescribes, i'm considering pain pump (i am desperate) I spend 20 hours a day, laying on special mattress that i get thru insurance co. I cannot do 95 % of What DR Tennant recommends. i am now quite depressed, as I've had to give up most of my life. I do work out with 5 lb weights & can do squats, to strengthen my quads & glutes. I have a tethered cord at C6 & lumbo sacral... area, so no balance, no coordination. With all the hardware in me, so limited. I also have NO money, anymore to buy supplements etc... I do not know what else to do? I also have a permanent supra pubic catheter (post paralysis) & get multi drug resistant infections needing IV therapy for UTI Don't mean to be a downer, but think the pain pump might be only option
Replies to "I have severe adhesive arachnoiditis. Am fused from C3 thru my sacrum ( post MRSA meningitis)..."
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I recently after yrs of testing finally found by my primary care after asking of a diagnosis for a form , needless to say , she found a MRI done in April 2024 , flagged to Dr who never responded to me of this finding . I have went from cancerous tumor in 1986 which was followed by 29 radiation treatments then learning to walk again . I was 16 , when I was 27 I had a son , had good health but dealt with daily pain until 5-8 years ago after seeing numerous Dr's and finding nothing I traveled to Roanoake VA to carilion Clinic neurologist specialist who found I was going to find slow paralysis .
Also had team respond personally to me before a 3-4 hour trip not to come bc I wasn't a candidate for a spinal stimulator due to my naturally fused spine and Dr said it could not be possible .
I know as of 2 weeks I have every symptoms of Arachnoiditis and now have had 2 Dr's today say there is nothing I can do . I just want to have a quality of life I can tolerate only to hear you are just going to suffer. I just need help w bladder leakage pressure and also pain and not being able to set for long periods of time nor sleep more than a few hours.
Why are Dr's saying this knowing I know they could cath me , also they make higher dose of medication I recieve and say they can't help s person whom is asking to be able to have a social life again after years and I am not a suicide risk or risk to others.
Why if it was their self or a family member ( which I'd never wish on anyone) how they would feel.
They could help me up until paralysis happens and then hospice but I'm wanting to live.
Thank you. And I pray and bless you all. 🙏