Adhesive arachnoiditis

[MrGRT]

So, after many years of back issues, 3 surgeries, multiple nerve root blocks, multiple MRIs, LOTS of prescription drugs, a radiologist has written adhesive arachnoiditis in my mri report. Meaning some of my nerves are clumped together and stuck to the layer that surrounds them. That causes serious amounts of pain, worst than childbirth and phantom limb, not my words.

I am very depressed, have cried already, I am man enough to admit it. I am in stage 3 of 4 by my checking, stage 4 could mean paralysis, loss control of bladder and bowel, electrical shocks, dementia and some others.

It matches all of my symptoms and if true which I am very confident it is then I am fked as you have read so far. Is a progressive illness, requires lots of medication and it has to be treated aggressively to try to reverse some of it. Somehow as it happens, my neurosurgeon didn't read the report but did his own analysis and said everything looked OK on it but another exam, a ct spect scan showed a non-solid fusion which he believes is the cause. The mri report says the fusion is solid. I got the report after said appointment. The ct spect report I can't comprehend.

Now, I have found some information online supported by fellow sufferers and in the USA the most successful treatment includes neuro-antinflamatories (not your diclofenac or ibuprofen), hormones to try to make the nerves regrow and opiods. The treatment suggest many different drugs.
And very recently there has been some success with stem cells.

Having a 4th surgery is a No from me specially because it will accelerate the AA, having a TENS is also a No because it accelerates AA.

I know at this moment this is a self-diagnostic.

So aside from venting here, feeling cheated and in pain, without mentioning that I had my man maths worked for a Cayman, I don't know how to deal with my GP and my current pain doctor (I had a lidocaine infusion a couple if weeks ago and did nothing for me).

My GP is very difficult to talk to and get through, telling me to get used to the pain and deal with it via pain management and now is evident this is not working.
What I would like is to have this diagnosis verified by an expert in AA and if positive start the same treatment that has been successful to the few sufferers of this in USA here but I fear it will be very difficult to get through.

So, anyone has some wise words for me please? What to do and how?

Anyone dealing with it?