Valorie's Story

I will consider this an attempt as a synopsis of my medical history, in the hope that maybe someone can tell me if my problem is the progression of "A".

In '80 I was given a myelogram with Omnipaque to determine why I was losing the use of my left leg. The neurologist did a poor job of this, and therefore, in '81 a neurosurgeon did another myelogram with an oil based dye which was never completely aspirated. They found and removed a neurofibroma tumor. The laminectomy was from T12 - L3. I was told to take physical therapy and not work for 2 years.

This was not possible with 3 small boys and financial difficulties. Therefore, I worked from '82 - '83 (about 1 1/2 years).    Due to continual hospitalizations caused by lower back pain, my physician would no longer let me work. I returned back to work in '85, convincing my physician I was fine. I worked full time as a legal secretary (in Washington D.C.) and as a Realtor part-time.

By '90 I wound up being rolled into the hospital in a wheel chair unable to walk on my own. An MRI was done showing no more tumors but degenerative disc disease. I spent approx. 10 days in the hospital, bed rest, pain meds and before I left was given an epidural steroid of what I don't know. At this time my physician insisted I file for social security. After having been turned down in the '80's I didn't take his advice.     although I knew from the pain and the fact that I could hardly remember making it home through D.C. traffic on pain meds, I had to re-evaluate my circumstance.  My husband and I   made the decision to move to Very Beach, FL.

Due to my inability to work full-time, we lost everything we had. I tried to return to work again, only to last 6 months. At this time I began to develop a large growth on my left heel, this was surgically removed & all that was determined was that it had fibrosis cells.  I had been ambulating with a cane since '87 due to loss of muscle tissue and nerve damage in my left leg (residuals of the tumor, I had been told).

Finally in '92, I filed for soc.sec and was approved in '93, at which time I left my husband and with my youngest son moved here to Tenn. I was able to work a couple of days a week for 5 years at the local airport in exchange for the use of the airplanes and flying lessons. However during this time, every 2 years the lower back pain would get worse. Again I went through MIRE'S, bone scans, etc., and was given epidural steroid injections of what I don't know. I just knew it helped for a while.

In Sept. '99 the lower back pain became worse then it had ever been. (I had stopped my work & flying in May '99). After an MRI & X-rays in Sept '99, the reports again mentioned the degenerative. disc disease, laminectomy defects from T12-L3 (I still do not know what laminectomy defects means?), bulging disc in this entire area, rotoscoliosis, and large bone spurs. After seeing several doctors I was sent to a neurosurgeon who set me up for a series of epidural steroid injections, of what I never thought it necessary to ask. The first injection went well, but after the second injection in Jan '00, within 24 hours I was in screaming, "electric shock" type pain. I could not move at all without excruciating pain. I was then sent for another MRI, X-rays, blood work etc. This MRI stated that in addition to everything on the previous MRI, I had adhesive arachnoiditis. The technician who read this

MRI, also compared it to the one in September, and said there had been no changes from the September. MRI (although it never mentioned anything about "arachnoiditis".

The neurosurgeon admitted and even wrote in his report that I had been injured from this last injection. He explained to my mother and I (and also by drawing us a picture), of how the arachnoid layer had been pierced and the needle, along with it's contents had been injected into the arachnoid layer.  This is when I joined this group and started researching things, only to find out that the steroid was Depo Medrol.

Thanks to this group and my dear friend, Linda Coheley, I now have a wonderful doctor.

All of this is to bring me back to my original question. From what I understand, I 'may" have had arachnoiditis from the myelograms, although it NEVER caused me the sort of pain I now suffer from. Neither, during ALL the years prior to this injection, was I EVER on medication of ANY kind on a regular basis.  I now know that without the medications I take I would probably have at least attempted suicide due to the pain if I did not have them. I thought I knew what pain was prior to the Depo - Medrol injection and I could rate it on a scale of 1 - 10, since this injection I have learned there is NO SCALE that can rate this type of pain.  Therefore, my question may be some what complicated. The MRI report said I have adhesive arachnoiditis above the L3 level.

To the question(s), how far up can the adhesive arachnoiditis go, up your entire spine? Or is it the Depo Medrol or the oil based dye (which was never completely aspirated) which is travelling up my spine and now causing this terrible pain in my arm and hands? The pain in my arms and hands, in addition to the low back pain and hip pain wakes me up through out the night and does not cease until I've had about my third dose of medications, which I take about 3 hours through out my entire day? The pain especially in my arms is as excruciating as that in my lower back, hips & legs.

I thank all of you for taking the time to read the "synopsis" of my medical background and give Denise permission to copy and use any part of it on the new website. (For information purposes, my meds are: 600mg of Neurontin 5 x a day, 1mg of Clonazepam 3 x a day, Lortab 10 3 x a day and 75mg of Elavil at night. These medications still do not stop the pain upon any type of activity.) My doctor recommended the SCS unit upon my last visit, but I turned this down, as I did not feel the risk out weighed the benefits.

If anyone can give me an answer to any of my questions or an explanation of this new, terrible pain in my arms (especially) and hands, I would be extremely appreciative of it!!!

As all of this (along with personal family concerns), is beginning to cause me a great deal of depression.

With my deepest and sincerest thanks and love,

Valorie