Sciatica nightmare

@joy75 I am sorry but it DOES seem like your cauda equina is being compressed! I had the same thing. (exactly the same from your description!) Was ALSO TOLD BY A NEUROSURGEON HE COULDN'T DO A THING. (What a jerk and he ended up being the head of a dept at the biggest teaching university in the U.S.. after 20 years). You need to see an ORTHOPEDIC surgeon, with current MRI in hand. But honestly, they will do a simple xray in their office so don't worry if your MRI is older than one year. I had FOUR different opinions. By the time I walked into my prince charming surgeon, it took a blink of an eye for me to say DO IT (the surgery). My vertebra had actually fused ITSELF together when the disc fell out over 20 years. I had the SAME debilitation in my legs. The nerves were permanently damaged by the time I found prince charming surgeon. Everything you described is your Cauda Equina being SQUISHED to their demise. I am THRILLED with my lumbar surgery every day of every week of every month of every year since 2018. GET ANOTHER OPINION from a good orthopedic school! (did I say I had FOUR?!) Private doctors were terrible, I found. One said I had nothing but a sprained back, the other wanted to completely fuse me from neck to tailbone! DON'T STOP reaching out. It sounds like you are being ran through the hamster wheel. I know. My orthopedic work is done at UCSD.

@joy75
You're more than welcome and you worry about you, not us. You have enough on your plate.

I used to suffer Cluster Headache for 20 years and I'd never even met anyone similar that could understand what I was going through. I still get them but nowhere near as frequent.

I joined a start-up support forum around 2005. It was such a great comfort to speak to other people from around the world and compare experiences, treatments or just even have a laugh together. It's since developed into an full blown international awareness organisation.

* Getting the right doctor IS half the battle.

I live in Scotland and over the years the pressure on the NHS means we no longer have a family doctor at our local clinic. Every time I attend it's somebody different.
I've had the odd good one and some very, very bad ones that won't listen at all even to the point of being rude that just brush you off to an infuriating degree.

Try to see somebody else if you can as it doesn't seem your doc is taking you seriously and is an obstical to you. I've been there and just got lucky.
Don't give up, keep hammering away at them and you may get your way, if anything just for them to shut you up. Better still get somebody else until you find a decent one. Even formally complain.

Why should you live a crappy lifestyle in needless agony because of them? You having paid into a healthcare system your whole life then be fobbed off when you're desperate for help. It's ridiculous.

Hang in there and best wishes.

@heisenberg34 What’s to say you won’t build up a tolerance to the stronger opioids? Therein lies the problem. For many of us.

@jackiet Ah, there's the rub. If only the new, non-opioid drug, Journavyx, worked on my pain. It's like eating a sugar cube. At 78, and in severe pain, I would gladly take the chance if the stronger drug gave me blessed relief.

Joy, so sorry to read of your forever pain. Have you got or borrowed an inversion chair. It takes your weight off your spine.
Then take PLENTY of methylcobalamin (B12,) That regrows missing myelin insulation around that huge nerve leaving your back.

@heisenberg34
I take it that's like an implanted type TENS machine idea. My physio suggested using a regular external one last year but those I looked at on the web would say expensive junk, not fit for purpose etc. in a lot of the reviews. I may yet give one a try anyway but I wouldn't be expecting miracles just some added relief.

I'd be very fearfull of having any kind of permanent operation. There was a scandal here not long ago that reached government level on TV news of botched spinal ops that had made people worse instead of better.
I suppose there's always an element of risk but that's done little for my confidence in going down that road unless absolutely necessary.

Thanks for the suggestion though.

@jason321 I hear you loud and clear. A major surgery like a spinal cord stimulator is not to be taken lightly. One should be at a place where most options have been exhausted. Pain is robbing you of life. The trial involves a neurosurgeon making a small incision in the lumber spine area and inserting a temporary lead into the space surrounding the spinal cord. The other end of the lead is attached to a battery pack that is worn on the lower back. You wear this for a few days to see how it affects your pain. They are looking for at least 50% reduction. If you choose, you can have the permanent implant done.
Obviously, no guarantees. It dropped my pain by about 70%. Hope you can find something to help with your pain.

FIRST, NO CHIROPRACTOR believe me I had debilitating back pain for years and sure opiates did the trick and that's why I'm on Suboxens now going on 8 yrs. I've had 4 lower back surgeries,,both hips replaced,,,lung cancer with lobectomy. So I know alot about PAIN. YOU GET TO A NUROSURGEON. NO if,, ands,,or buts my last back surgery was a Spinal Fusion BAMM! End of back pain. Previous 3 surgeries were Steninosis Ya hammer and chisel to chip away at spurs and arthritic bone ,ya they worked along with opiates but really hard to cut straight line with skillsaw when falling asleep lol ,,Home Remodeling 47 years. U get back to surgeon and demand FUSION.
GOOD LUCK

@heyjoe415 I had L5-S1 fusion back in 2017. The ortho surgeon said I had spondylolisthesis. This surgery was supposed to help reduce the pain that I was experiencing due to a ski fall. It was a very unpleasant experience. In the long run it did not help to reduce my pain. Looking back, I don't believe that I would have the surgery again.

@heisenberg34 Yes, I understand what you’re saying. I don’t need to go into my own story. Just let me say that some people build up tolerance to opioids fast. I was one of them, and over time it also messed up my digestive tract. So I am titrating off.