Susie - California, USA

Hi my name is Susie. I was misdiagnosed from May 1984 through October 1985. I was getting into my 73 Firebird - the doors weigh a ton or so. Just as I was pulling in my left foot and ankle a passing vehicle slammed the door on them at 80mph. I went everywhere I could find a doctor. who thought he could help. In October my Physical Therapist referred me to a Podiatrist, who said he could help. As I walked into his office he said "you have RSD" and promptly sent me for about ten nerve blocks. Both doctors recommended a sympthectomy, so I had one - and years later had another on the same side. One set of doctors even wanted to remove my leg below the knee. I was then passed between doctors in Santa Fe (New Mexico), California and finally to Lubbuck (Texas). They put in two peripheral nerve stimulators, which didn't help much. I also had two Radio Frequenting Thermo Coagulation sympathectomies, which only caused pain. After being in Lubbuck for almost a year, I came home and was told about a Neurosurgeon who had a wonderful spinal cord stimulator, just like a dorsal column stimulators. I was talked into having it done five times, but none of it worked on me… it just made the RSD move. Last year the SCS became infected and I had the first major surgery and one day later had the second one. The doctor left two electrodes in me, which are at least one and a half inches long. They are now talking about another major surgery, to rake those electrodes out.

I was put on Methadone and fetinal to take some of the pain away. I was on those narcotics from 1990 until March 2001. When I didn't feel right I went to the ER and was admitted straight away. About a week later, the RN heard something wrong in my room and came in to find me in full arrest - my heart and lungs had stopped working. I was on a ventilator for 18 days and got a puffed lung and pneumonia. My doctor stopped all narcotics and I am now taking a very high dose of Neurtonin and a bunch of other pills. My feet still hurt. I have RSD in my whole body (chest, back, arms, legs, waist, feet and ankles). My doctor is very knowledgeable and said nothing else can be tried with out having a pump put in - but I think I have had enough. One thing I didn't say was I was in the hospital the last time for a little over 13 weeks, 3 months one week and a few more days

Susie also added -
Radio Frequenting Thermo Coagulation is a probe through your abdomen that goes to you spine while the doctor watches the probe through an endoscope. When he/she gets to the right point they turn on the probe and it burns out your ganglion or nerve ending. I was told that I was strong enough to take the pain so was not sedated during the procedure. I would not let an experimental rat go through the pain I had!