@cb772
Carol, one question I don't know if you have spoken of before, but have you already tried any of the alternative pain aids such as cannabis and kratom? Just wondering if they might bring some relief to you, at least cut your hideously high pain level a few points.

I developed adhesive arachnoiditis in 2012 as a result of L5-S1 laminectomy, which is inflammation of the spinal meninges that progresses to nerve clumping and scarring. (Usually caused by surgery or injections). Very severe pain and disability. Next surgeon did bogus tethered cord surgery and stabilization. My pelvis tilted, had to have hip replacement, which was done wrong and resulted in hip instability. Took two years to find honest ortho who would diagnose and do revision. I fell many times, which caused AA to be worse. Developed severe spinal stenosis during the period which also made AA worse. Medical field tries to pretend arachnoiditis isn't real since it is iatrogenic in most cases, therefore, I wasn't given diagnosis until 2018 after having surgery for stenosis. Losing more muscles in lower extremities day by day, getting more and more difficult to walk. Bladder, bowel issues, chronic fatigue, immune system dysfunction, headaches due to spinal fluid flow obstruction, 75% reduced kidney function, very severe anal pain that is exacerbated by movement. Opioids no longer help, I think bc spinal stenosis made scarring and clumping worse. Pain pump doesn't help either. One neurosurgeon said to take drug holiday. Pain doctor wouldn't do a trial of ziconotide or prescribe ketorolac and dexamethasone to reduce inflammation. I explained time and again that the high dose opioids weren't helping, but clinic kept giving me same meds. I finally tapered off pills and patches and asked doctor to put saline in pump. He would only reduce pump meds from 8 mg to 1 mg. Said he didn't believe in tolerance and hyperalgesia, which I definitely had. Three days after this appt I received letter stating they had decided on dismissal. Guess AA was too much of a problem for this lazy doctor. Looking into umbilical stem cells out of country, but there is no guarantee. Had to drive three hours one way to find neurosurgeon who manages Flowonix pumps. Flowonix pumps are relatively uncommon but my doctor didn't give me a choice between Medtronics bc he is friends with the Flowonix rep. Neurosurgeon is reducing meds VERY VERY slowly. He originally talked like he would put saline in pump very soon, but it's been four months now. Money thing, maybe, but I want opioids out of my system bc they provide ZERO relief. Most nights I can't sleep until 3-4 AM because of anal burning/throbbing. I think about suicide a lot, which is another reason I need to be opioid free. It is always in the back of my mind though that I will end up in hell if I kill myself, and it bothers me that so many people kill themselves for stupid unnecessary reasons. Early on when pain meds still worked I took 1 mg benzos. This helped as much as pain meds and I don't know why they make such a big deal about them if the patient is alert and breathing normally. Maybe they are afraid of being sued by family is something happened. I have noticed a pattern in my pain management records, with the exception of the first one where I went for the first five years. They seem to begin early on fabricating documentation to make me sound like a problem patient in case they need something to use against me later on. Every word is twisted and things are put in quotation marks that I did not say. It is terrible to be dependent upon these evil people for anything, let alone pain relief.

Hope you find some treatment that helps.