Patients' Stories

Margie's Story

It was in the late 60's when I had the first surgery and myelogram. I was 15 years old. It totally changed my life. One surgery led to another and then spinal fusion and 2 more myelograms. To total it was about 12 or 13 myelograms and spinal surgeries. I found out that one surgery leads to another. I had to give up being a model in N.Y.C. and then went to the dogs. It was in 1977 that I was diagnosed with Arachnoiditis. Trying to live with constant pain put too much stress on my system. After too many surgeries it led to stomach surgery at which time I lost 3/4 of my stomach. It led to pernicious anemia and on and on. A shunt was out in my back and I was told that would stop the burning and spasms.

That was just a lie. Two weeks later they went back in and I was told this was the cure all. Wrong again. One more week, more myelograms and the final surgery. Well I walked in to the hospital and in 1991,I ended up as a paraplegic with an indwelling catheter. They now anticipate one more surgery. I have 3 herniated discs in my neck, a compressed spine and a curved spine. Who knows what is next.

It is 36 years now and I am getting progressively worse. I have now come down with C.O.P.D. and am on oxygen 24/7. My doctors said that from the stress and pain it has led to all these illness. The arachnoiditis is taking me down real fast. I am on Dilaudid ,MS Contin, Zoloft and about 20 different meds.

This illness has cost me a 20 year relationship. My partner said it was to hard to see me in so much pain that they went back to N.J. leaving me alone just with my cat Pooh. I have a handicapped apartment with no carpet. The spasms have caused me to scuff all of the floor.

The burning seems to be getting unbearable.

I have been in pain management, had blocks plus every thing else there is or was. My life has turned into a living hell from the "A". The pain very seldom disappears and the depression gets worse and worse, yet every day I get into the wheelchair, feed Pooh, get dressed ,and try to get through the day. I have home health 3 times a week so that helps. Well it is 36 years ,and I am still fighting to live. My family cannot understand or don't want to. I feel totally alone and at times no way to turn. I hope that maybe I can help someone with what I have been through and maybe someone is out there that understands and that I can talk to.

Thanks

Margie