Welcome to the new forum! (arachnoiditis)

[Claudine Weber]

Hello to all...

My story is similar to many stories. I have been healthy and active (Working for French National Health System, Juridical team, walking a lot, swimming a lot, ..)

In 1992, I had an epidural anesthesiology for a very minor surgery, not back related. As soon as the effects of the anesthesy stopped, I was overwhelmed with such a horrible burning pain, despite the fact that I am very hard to pain. I had never experienced such a pain, even when giving birth ( no anesthesia) to my 2 sons...I was told that it was nothing. I began to feel always tired, had severe cramps in the abdomen, lost sleep quite completely, frequent lumbagos, terrible headaches, and told by all doctors to be a hysterical woman in premenopause period. t lasted till a fall end of November 2001. I came off paralysed and horrible pain. On my MRI were seen:
- Arachnoiditis calcified from L2 to L5
- Tarlovcysts, bilateral at S1 S2 S3 and one at S4.

I searched for information and found only a few about Tarlovcysts telling of surgery to treat them.
I had surgery on August 8th, 2002 and came off worse.

In 2003, I sent my files to 4 different specialists, without any other comment than the description of my pain and symptoms and medical history. The 4 reports came with similar conclusions: Calcified Arachnoiditis that could only be due to epidural anesthesia, scar tissue where Tcs surgery plus severe spine instability as main ligaments had been cut, there remains only a 3rd of the sacrum bone as they had to force to take off its roof and a large piece of it is now encysted in the middle of a mix of muscle and nerve scar tissue.Of course, there is also now scar tissue at each level of the sacral vertebraes.

I am in severe pain mostly since this last surgery and lost my work for disability to this work, could never find another one and most of all, I have a real allergy to all medications morphine or opiod base...I have close to no pain management, except some technique for deep relaxation as to lack of sleep, but I can't make it when the pain level is at 10.

I began to share my story and to make websites for Europe about those pathologies, so that people could find reliable information. I went back to my studies of anatomy, physiology, neurology with the help of some doctors and specialists. I needed to understand to face the ruin of my life. I am sharing with friends and colleagues from all over the world, with specialists to provide information..

I sincerely want to give my pain some sense, and give others a hand, as I know, as to my own experience, that it can make a real difference...
Sincerely
Claudine