http://www.aboutarachnoiditis.org/stories/barbrak.html
My problem started in March 1965. I was in a pretty bad auto accident and messed up my back. It turned out to be a real bad whiplash. Yes, there is such a thing as whiplash, (smile).
While I was hospitalized, I received my first of many myelograms. Naturally it was Pantopaque. At that time, I was told I had a disease of the spine called SPONDYLOLYSIS;. the vertebrae were weak and getting soft. I was also told, that I could go through life and nothing would ever happen. WRONG!
In 1976 I was swimming and felt something pull in my lower back. It hurt a bit. But, I stayed in the pool for awhile longer. When I got out of the pool it started to hurt worse. The next day it was even worse. After about three days, I made an appointment to see the doctor. To make a long story short, (smile) I was then told I had progressed to a disease called
SPONDYLOLISTHESIS; forward slippage of a vertebrae over the one below it.
The doctor tried all the conventional treatments: bed rest, traction, back brace, etc. But, nothing worked and I was still in a lot of pain. Next step surgery. Oh yes, I had more Pantopaque myelograms during this time. I was operated on and they did a fusion from L4 to L5 and from L5 to S1. It took me about a year to fully recover from the surgery. It should have only taken about 6 months. But, I was in a hurry. So I went back to work too soon.(smile)
Everything was fine until 1981. I began having severe back pains and hot needles running down my legs. SOUND FAMILIAR?
More Pantopaque myleograms, CT SCANS, etc. My doctor, an orthopedic, called in a neurosurgeon and he went into my back again and removed lots of adhesions (scar tissue).
Everything was fine until February, 1989. I started having the same symptoms as I had in 1981. I was sure that another operation was in store. And, I would be fine again for the next 10 years. WRONG! I Went back to my neurosurgeon and he did 2 MRI's on me and told me I had ARACHNOIDITIS. Never heard of it! He explained to me what it was and that there was no cure. He said the only thing he could do was to control the pain. He said there was 5 ways to get rid of the pain.
1. Operate on my brain where I could no longer feel pain but I would probably be in a vegetative state.
2. Cut the nerves in my spinal cord but I would probably be paralyzed.
3. Cut the nerves to my legs but I would have a lot of trouble walking.
4. Put in an electric stimulator implanted in my back.
5. Give me the implanted infusion pump.
He then told me he WOULD NOT DO THE FIRST THREE. Maybe another doctor would. But, not him. THANK GOD! He then told me to go home and decide between the implanted stimulator and the morphine pump. All of this was just too much for me to digest at once. I was scared to death.
After a few days, I started doing research on the stimulator and the pump. I found out the stimulator didn't help to much if you had pain in more than one area. And, if it did help, it wouldn't last more than a few years.
I started trying to do research on the pump. But, there was not much out there. At that time, the only ones getting the pump were mostly cancer patients who were terminal. I was flying blind as regards to the pump. The way the doctor described the operation to put in the stimulator scared the hell out of me. So, on that basis and my research, I chose the pump. THANK GOD! He scheduled me for surgery to implant the pump.
The day before surgery the doctor's office called to tell me it was cancelled because MEDICARE refused to pay for it because I wasn't dying. I am on SSD so I had medicare. My doctor appealed 3 times over a period of months to no avail.
In the meantime, I was becoming a drug addict because the pain is so bad. And, I was taking lots of medicine. Heavy duty ones and even they are not enough. Finally, I get this idea to call my Congresswoman. Exactly 6 weeks after I contacted her, I was in the hospital having the surgery. I was the one that broke the MEDICARE barrier thanks to her.
I had my pump put in October 1989. After about a month of having it adjusted, I WAS 99% PAIN FREE. It was a five year pump and it lasted 4 years and 8 months. My second pump lasted 5 years minus 13 days. (The batteries wore out after almost 4 years.) My third pump was implanted a year and a half ago. It is a 7 to 9 year pump. I am doing fine with it.
I have also been through two drug "holidays". That is when they shut down your pump and treat you with oral meds for 2 to 3 weeks. That way the nerve receptors dry out and you can go back down to a lower dose. It was not fun. But, it is worth it. I am still 99% pain free most of the time.
When asked by ASAMS how I am, I told them I have my good days and bad days. More good ones than bad. There is nothing I cannot do other than driving cross country.
Before the pump, I was bedridden only getting out of the house to go to doctors. Now I walk, swim, ride a bicycle, and go to lots of ball games.
Barbra K.