LESLIE THOMPSON: My Story

I herniated a disc (L4/5) 20 years ago while working as a Registered Nurse. I had very little back discomfort at the time, my pain (burning) was primarily running down the back of my right leg. After examination, my doctor, an orthopedic surgeon, stated that I had herniated a disc and instructed me to wear a back brace. When asked to please examine the back brace (as I didn't feel it fit me correctly) he stated that there was likely nothing wrong with me and that I simply wanted some time off work.

Needless to say I consulted another doctor who ordered an epidural venogram, as he felt it it was safer than a myelogram. This procedure confirmed the herniation. By this time I was experiencing bilateral leg pain. A chymopapy was done in attempt to shrink the disc. Nothing was gained from this procedure but additional back pain! I had a laminectomy two months later.

The leg pain continued and a pain specialist recommended an epidural injection of cortisone which did not ease the pain for long. Physical therapy which involved TENS was not successful in reducing my pain. I was booked for a myeloscopy ( I was told that the doctor performing this procedure would be able to visualize my spinal cord and take pictures of any abnormality) . My pain management doctor informed me that he doubted they would find anything--he thought my problems were 'in my head'. I as devastated, but a part of me wondered if he was right--why wasn't I getting better?

The myeloscopy revealed Arachnoiditis. I had no idea what Arachnoiditis was but, frankly, I was happy to have a diagnosis and to learn that my problems were not psychological! I was then given the choice of further surgery to remove the scar tissue (the doctor told me there was a 50-50 chance of success). I refused the surgery as I had lost a great deal of cerebral spinal fluid during the procedure. After recovery, I questioned my doctor further about surgery and he advised me not to do it (I have no idea why he suggested it while I was in hospital following the myeloscopy).

I have always considered myself very fortunate compared to fellow Arachnoiditis sufferers. Although I've had this condition for a long time I was able to return to school, obtain my nursing degree and work for several years (my work involved counseling and teaching, I knew that I could not do the physical work involved in hospital nursing). I had two children, and although the pregnancies were difficult due to back pain and no epidural during labour, it was well worth it!

My symptoms (bilateral burning leg pain, knifelike pain in my feet, back pain and urinary urgency) has escalated these last three years to the point where my physical activities and social life are quite limited. I am currently refusing all invasive procedures and since I am sensitive to a lot of medications, my options are limited. I am currently taking VIOXX, NORFLEX, and AMBIEN.

The constant pain of Arachnoiditis and the ignorance regarding this condition shared by the medical profession and the general public make it a tough road to follow. But the support of fellow sufferers, a loving family, and a positive attitude help immensely.