Adhesive Arachnoiditis - Kris

[Guest guest]

--- Kris wrote:

>

> I just wanted to jump in and say I also have DDD in my spine, with

the same disks (L3-S1) affected most, and I also have arachnoiditis.

Hi Kris -

I'm another Adhesive Arachnoiditis sufferer. I also have severe DDD

and arthritic changes in my lower back and neck, multiple herniated

disks in my lumbar and thoracic areas, as well as severe congenital

lumbar stenosis. But it's the AA that is the true hell. I've lived

with stenosis pain my entire life, but I honestly didn't know what

hurt was until a neurosurgeon opened up my spinal cord by accident

during a diskectomy surgery.

The disk material had actually calcified in the spinal cord area

because I had to wait two years after herniating two lumbar disks to

get the necessary surgery, thanks to a terrible insurance that made

me jump through hoops and refused an MRI until almost a year into the

damage. As the surgeon was trying to chip out the calcified

material, he slipped and opened up the dura of the spinal cord,

getting blood into the cord and causing the inflammation that

eventually caused the AA.

I always laugh when someone asks me how my " back " is doing. They

don't have a freakin' clue. My " back " hurts like it has always hurt -

which is pretty bad - but it's my legs and feet, thanks to the AA,

that are the real agony.

I feel like someone is pouring acid down the insides of my legs and

it's pooling in my feet, eating away at them. I feel like I'm

walking on knifeblades, even when I'm lying down with my feet propped

up. The muscle contractures are crippling, including the entire

hamstring sometimes, as well as the calf muscles and muscles in the

feet and toes. Sometimes my feet and toes are so twisted from spasms

I can't get them into my shoes. My sciatic nerves in both legs feels

like someone is strumming them like a guitar. The odd nerve

sensations are so strange - water running down my legs, strings

wrapped around my toes and tightening, burning bamboo shoots under my

toenails.

I have foot drop in both feet, my left toes are paralyzed, and both

feet are completely numb to the touch up to the knees. I have to

check my feet daily for unknown damage to make sure I don't get an

infection. My husband followed me through the house one day by

following the trail of bloody footprints - I'd sliced the side of my

foot wide open and didn't even know it. People can't understand how

I can be completely numb and yet can have so much pain. They don't

understand that all the nerves running from my spine have been choked

off from their blood supply and the lifegiving cerebreal spinal

fluid, so they are almost completely dead, so they're sending out

crazy dying signals even as they're getting no signals in.

The tethered nerves mean that any exercise pays off the next day in

increased pain. But if I don't stretch every day the muscle spasms

will carry me away. It's a catch-22.

Some days I wish I could just cut off my feet and be done with it,

but I know the pain is coming from my back and amputation wouldn't

help - I'd still feel all the same pain even if the feet were gone!

And through all this, despite clear radiologic evidence and multiple

doctors diagnosing it, the neurosurgeon who did the damage denies

that AA even exists and says I don't have anything wrong that should

be causing that kind of nerve pain. Heck, even I can see on my film

that my entire cauda equina is " gone " from the center of the spinal

cord sheath, completely encased in scar tissue in the arachnoid

layer. But still he denies, and calls me a liar and a

hypochondriac. But he wants to do more surgery on me for the

stenosis, even though I've lived with it for 45 years and it's not

the cause of all this pain! I told him exactly where he could make

an incision - and it wasn't anywhere on my body! Ha!

But we keep going, don't we? It's good to know that someone else

understands what AA is all about, even if I wouldn't wish this on my

worst enemy. So many people look at me like I'm nuts when I try to

explain it, even doctors are hesitant to admit it even exists since

it is completely caused by their mistakes.

Cheryl in AZ

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