Brenda's Story

In 1995 I fell while skiing in New York, at that time they said that I only sprained my neck.

After 4 years of physical therapy and medication they decided to do a MRI (magnetic resonance imagining) which was positive. Next they thought a Myelogram would decide if I needed surgery or not.

On 29th June 1999 my life, as I knew it then dramatically changed.

I was a 43yr old in the prime of her life –in love, travelling, just brought a new home, worked 40 hours a week plus overtime as an x-ray technologist in a busy emergency room in Atlantic City, and thought I knew enough about the medical profession to keep me safe.

Boy was I wrong, on June 29th I went to the Radiologist to have my myelogram. When I got there my neurologist was called away and his partner was there instead, being a technician and assisting in many myelograms I thought how hard could it be? (boy was I wrong again) after the third attempt and my left leg involuntary coming off the table I knew I was in trouble. I asked him to stop as I was crying, cursing, and in pain. He tried two more times; at this point I demanded he stop.

Then the radiologist I knew came in and asked could he try I said yes because I knew he could get in and he did it with one stick, immediately after, they did a CAT scan (CT). After this I kept telling the doctor that I was having a lot of leg pain and he blew me off.

The next day I awoke with a spinal leak and was sent for a blood patch, it gave me great relief for the headache and neck pain but I had severe low back pain. They gave me fentanyl for this. After 3 days I still had a leak so they did another blood patch and my boyfriend (god bless him I could not survive without him or his 3 children)

Made me stay in bed for 2 days.

I continued to have back, leg and foot pain but every time I called the doctor's office they kept telling me that my meninges were inflamed. I finally made an appointment with the Dr and he ordered an MRI, the same day I had injections for my neck

(I didn't need surgery after all).

When I got home the doctor had called, I knew something was terribly wrong as they never call themselves the nurse calls you back.

He said I had some inflammation around my spinal cord and put me on steroids.

When I went to his office 28/8/99 he said he thought there was a pre-existing cyst on my spinal cord and wanted to do an another myelogram. I said "No-way and took my films and left.

I tried to get an appointment in Philadelphia but it was going to take 6 weeks. At last at 5pm on Labour Day weekend I finally got help from the head of neurosurgery at the University of Pennsylvania Hospital.

He told me to send the films federal express and would call me on Tuesday. In the meantime I was still working and looked up my own MRI report. That would be the first time I saw the word Arachnoiditis - now I know why when I asked a doctor friend of mine what it was, his face dropped and said to go to Philadelphia for my care.

When the neurologist from Philadelphia called on Tuesday he said that I had Arachnoiditis and needed to get a good pain management doctor. I went to one in the area and he used words like I guess and maybe, I left his office wondering if it was just me or are these people a bunch of idiots.

I finally went to a neurosurgeon at Thomas Jefferson and he agreed with the diagnosis but also thought maybe I had MS (Multiple Sclerosis) or lupus (no lupus), maybe MS as of right now. He referred me to the neurologist who said to find a new career and then sent me to the pain management Doctor.

Finally I got help, he put me on:

Then sent me to psychiatrist doctor and to pain management, rehabilitation for 8 weeks, that was in October.

In March I found out I have a “neurogenic bladder” and my father passed away-not a very good month. At rehabilitation we determined that even a little bit of exercising was causing too much pain.

I have a problem with short term memory and cognitive thinking, like when I ask the kids to take the clothes out of the dishwasher-thank god they don't think I'm crazy.

By May was house up for sale because Disability just doesn't cut it but thank god I have it I am now totally disabled and waiting for a ruling from SSI.

I now have basal cell cancer on my nose and am scheduled to have surgery on Thursday. They need to do reconstruction after they remove the cancer because of the position and depth, needless to say by June they changed my medications I now take:

I take all this and I still have pain, they want to put a spinal cord stimulator in October, not quite sure if I will have this done as the research I have done doesn't seem very promising.

Well it has been a year now and I am still very angry but trying to cope, seeing a counsellor, stretching, pacing, eating right and finding great pleasure in the small things I took for granted before.

Am also finding out who are my real friends are and the goodness of others.

Thank you all for reading this-if you got this far god bless and may you have all those good days in abundance.

Have a great day!!!

Brenda