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Tired of the fight for treatment/DIC & chronic pain

Chronic Pain | Last Active: Nov 25, 2020 | Replies (52)

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@jelizabeth

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.

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Replies to "I developed adhesive arachnoiditis in 2012 as a result of L5-S1 laminectomy, which is inflammation of..."

@jelizabeth
First just let me say that I am sorry for your terrible condition and the never ending ordeal that this is in your life. Your attitude toward suicide is indicative of believing in God and an afterlife. Hopefully you can derive some solace from faith in a better life after this one.

Due to government control there is a whole sense of mistrust built up between the patient and the practitioner. First, the arachnoiditis is, as you say, iatrogenic, meaning caused by your surgery itself (I had to look that one up), so the fear that they might be questioned or sued for their mistake leads them to put you in a bad light in their notes about you as a cover for later if they need it so they can use it against you if needed as you say. Any mistrust which develops between doctor and patient, as in any relationship, is very destructive.

The bottom line as I see it is that issues such as yours are as mysterious to them as to you. They are shooting in the dark and hoping to hit something, but what they end up hitting might just as easily make things worse as better. We of course all want help for our medical problems, but it's a total crap shoot as to whether you are going to be helped or made worse. God forbid a person develops an issue that is as cryptic and mysterious as nerve disease. When it comes to nerves, the medical establishment is bordering on complete ignorance. You may as well put yourself in the hands of someone who prescribes putting leaches on your body to bleed you (a practice commonly done hundreds of years ago). In modern times the equivalent to blood letting is drugs. Something to do to say they are doing something in many cases.

I'm sorry you have had such a rough go of it. Hank