Veteran With Aracnoiditis

WAS DIAGNOISED WITH ARACNOIDITIS IN 1981 OR SO . BY PRIVATE DR'S IN EUREKA CALIF. I HAD BURNING PAIN IN LOWER BACK , LEGS AND NECK AND HEAD. BUT HOW MINE CAME ON WAS WHEN I WAS IN HOUSTON TEXAS THEY WERE DOING A MYODIL INJECTION WITH OIL base DYE AND I WAS ALERGIC TO IT. SO INSTEAD OF THEM TAKING IT OUT OF ME THEY LEFT IT IN FOR YRS AND SOME IS STILL IN ME. I HAD TO GET A PRIVATE NEUROLOGIST TO GET OUT SOME OF IT. WHICH AT THE TIME GAVE ME SOME RELEIF. BUT HE TOLD ME DON'T GET TO EXCITED YOU STILL HAVE DROPLETS OF IT IN YOUR BACK , NECK, BRAIN. AND HE SAID WHEN THIS COMES BACK TOGATHER UP YOU WILL HAVE THE SEVERE PAIN AGAIN. WELL HE WAS RIGHT. NOW ALL OF THE STORY. A VA DR HERE IN GRANTS PASS OR. JUST TOOK ME OFF ALL MY MEDS THAT HELPED ME LIVE A HALF WAY DESCENT LIFE. WHEN I ASKED HER WHY SHE SAID WELL WHILE ON YOUR PAIN AGREEMENT WITH THE VA YOU SAW AN OUTSIDE DR. WHOM KNEW WHAT I WAS ALREADY TAKING AND HE SAID I WILL HELP YOU WITH ENOUGH DEMEROL TO HELP THE MEDS U ARE TAKING TO WORK BETTER. SO SHE SAID I CAN'T REFILL YOUR MEDS FROM THE VA. I HAD MY BACK BROKE IN VIETNAM 1968 WAS PARALIZED FOR A WHILE FROM THE WAIST DOWN. I THINK THIS IS A PRETTY SORRY DR. WHOM WANTS PEOPLE TO ONLY PLAY BY THERE RULES AND NOT FOR ANY PAIN RELEAVING YOU MAY GET FROM SOME OTHER OUTSIDE HELP. WELL ANYWAY I AM BACK WITH THE PAIN AND NOW I HAVE TO DEAL WITH THE WITHDRAWLS FROM THE MEDS TO SO TELLME WHAT WOULD YOU DO. 64 YRS OLD AND STILL HURTING BAD.
An Ep User An EP User
3 Responses Jan 23, 2013

Next month is my 5th anniversary. I cannot it has been this long already. I first got arach from a botched epidural for childbirth. I came home from the hospital with TWO gifts that day. A precious, beautiful, perfect baby girl.. And a lifelong disability and curse of the worst pain possibly imaginable. Shattered dreams. Plans for mine and my husband's future GONE.. Unless they could involve a wheelchair. Then I was given 3 epidural steroid injections. I lost my bladder function, bowel function, bladder and bowel control. I couldn't lift my feet or even walk to the bathroom any longer. I was DESTROYED. From trusting my doctors. These procedures were supposed to give me pain relief. They left me absolutely wrecked, and a shell of a human being. I was never warned of these possibilities. They pass a long sheet of teeny tiny warnings and give you a few seconds to go over it, while they assure you they've never had ANY problems before, and it will never happen to you. Guess what. It does. There are thousands of us out here. It's not reported or tracked, so we don't know how many. Many of the sufferers of Arachnoiditis have no idea! They are told something funky and vague, like "failed back syndrome", or fibromyalgia. That they are getting older, or are overweight. But it NEEDS to end!!

Do NOT.. Let anybody near your back with ANY kind of needle or scalpel. Nothing. Even if they tell you it will "go nowhere near your spine". It goes close enough to wreck your life. Many of us are proof of that. You may be desperate for relief, but if you are given this monstrosity, you will go back to wishing "ONLY" for the pain you had before.

I have a support group on Facebook. And an awareness page. Please, like us, join us, and help us warn everyone you know. I wouldn't wish this on my worst enemy. Please, don't allow your friends to get it!! WARN THEM!

Facebook.com/ArachnoiditisSocietyForAwarenessAndPrevention?ref=hl

facebook.com/groups/EndArachNowASAP/

Hi, I am sorry you are suffering too. Noone can imagine the pain can they ? I fell down 4 times 3 yrs ago and I reckon that accelerated the disease, as within 48hrs I had carers, and a mobility scooter, which I cant use now unfortunately. I have taken df118, I am now taking Tegretol, Diclofenac and Pethidine but they just ar'nt strong enough !!! I know its awful to say this, but it's nice to be in contact with someone else who understands what its like living with this pain. Just wish the Doctors would be more interest in trying to help, it as if they cant cure yiou so they just leave you to it. Because I am bedridden now I have to call them out if I need anything, but don't because I don't like to disturb them. I had good days and bad days until those falls that just buggered everything up..Not much we can do about it my friend, anytime you want to get in touch even to have a good moan PLEASE do so ok? xxx

I am sorry, you are the 3rd person I have come across with arachnoidites now and I too have been diagnosed in January this year. I cant help thinking what the rest of my life holds for me. When people look at you, they dont know what you are going through and nobody knows what it feels like. I cant work as I can sit or stand for long. I am taking vitamin B1 and B12 and Alpha lipoic acid, df118, stillpain, tegratol and it doesnt work. I dont think anything is going to work. Someone needs to invent a nerve pain killer, wouldnt life be much better.