6 replies to this topic

[cestlavie]

Does anyone suffer from Adhesive Arachnoiditis? Do you have any suggestions as to relieving the sharp shooting pains that take your breath away, keep you up all night, make you want to scream? I am an Asia A/ T11 paraplegic from a simple laminectomy that had gone bad in the OR. Now I suffer from this awful,incurable disease on top of the paraplegia.

[ajl338]

yes and no. I have simular issues from a lumber puncture that went wrong.
I have found that gabapentin helps. Its not a pain killer in the traditional sence, it was originally for epilipsy but works by subduing some of the signal carries of the pain so they dont get to your brain, therefore you dont feel like you are being electricuted as much

ann

[pinkcloud]

hi

i am sorry i have never heard of this before, have you asked your doctor if these are nerve pains? As they sound like nerve pains
.

Nerve pain...i had lyrica..this did nothing much really except i felt doped up and banged on a lot of weight..at the time it was the first nerve med i tried (after coming off hospital meds..so many i dont know what did what lol)..... so it felt better than nothing at the beginning. But i hear many others like it.

I am on amitriptylin at night then Duloxetine in the morning.

All may knock you around for a while but soon this eases....thing is...side effects start right away, the pain relief does not

i shall say start off at a low dose..then increase steadily, then your in control of the meds a bit more too.

Best wishes

[eddie21]

hi I suffer from Adhesive arachnoiditis I had 6 myodil injection over 8 years because I broke my neck and back but i am still able to walk only just though and I do suffer from shooting pains day and night I find that if it is bad night i stand under a hot shower even though heat effects me with the water just on my back and then go strait to bed but before this i take max dose of amitriptylin (50 mg)and then maybe I might get a hour or two sleep try not to sleep in the day i know it is easy to say that but by not sleeping in the day you may sleep better at night i was told I had AA in 1988 my accident happend in 1974 hope this helps

[kidrock]

I do,

My whole spinal cord has been affected following a spinal anethesetic. I'm paralysed. I also ended up with Hydrocephalus and I have a Syrinx. I have all the usual problems. Bladder is dreadful and I've had a ileostomy. I've had it for 5 years. I have a full diagnosis of Thoracic-Lumbar Arachnoiditis. It's still really inflammed. I'm T5 paralysed.

The only way I have found to relieve the nasty tightness and shootings that hit you at 4am is to have a warm shower. It's living in pure hell, that nobody understands not even the people closest to you. I can be crying in agony, spasming and twitching and being unable to get comfortable.

I take pregablin and baclofen. I've pretty much tried every drug on the market. Also, botox into my legs and it's still has not helped.

Ive learned to live and breath through the pain and I have a very nice life. I try to think about the positives.

[eddie21]

hi just to add you can get Arachnoiditis from anything that is put into the spine even epdurals for birth but you can only get Adhesive arachnoiditis (AA) by having Myodil dye mainly made by Glaxo injected into the spine i had 6 injections from around 1976-1980s can not quite remeber which year i had the final mydil dye but in 1988 it was banned here in the UK yes I am sorry I am from the UK but a friend in NZ told me about this site and wondered if it would help me but as usuall i am afraid it has not help me but if I can help others I will

[harlton]

Hi Cestlavie,
I have this to, sorry you have it, I've not found it easy to deal with. Doctors are not really clued in about it either in general. Gaba and some form of opiate in combination, helped me there's a website dedicated to it now A.S.A.M. society, out of New Zealand & U.K. I believe.
Surgery usually makes it a lot worse or so I was told. So make sure you get a Dr who really knows about it.
I have Hard adhesive arachnoiditis, from having spinal surgery to(no dye), I had already leaned bad things about it, and refused it, luckily.
My second surgery was 4-5 hrs of "carving and scraping it off of my vertebra and my cord". They told me they did a lot of damage in the process, but they had to do something.
They explained the long shot it was before, but it has been better, I think in the long run. Just had to get thru the years of hell, before I found some relief, better these days, and the on-going idiots.
My neuro-surgeon was one of Canada's top Neuro's, if not the guy. Even his understanding of it then was low. also I have found that once Dr's know you have it, their interest in helping you is low, they don't like failure, and we are almost gauranteed to do so.