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personal stories and notes from our correspondents

Carron - St Louis Missouri, USA

My name is Carron and I would like to share my husband, Bob's, story because it sounds like what a lot of you have been going through.
My husband started in June 2000with signs of carpal tunnel syndrome, with severe pain and numbness in his left hand and shoulder. This is his primary hand because he is left handed. He reported it to his supervisor at Coca Cola and was sent to the company doctor for a nerve conduction test. The doctor said there was nothing wrong with him and sent him back to work. By March of 2001, his hand was completely numb and his arm and shoulder were so painful he could not perform his job. He decided to go on disability and not go through Workers Comp, since he did not want to deal with the company doctor.
We started in March searching for a doctor that could or would help him. The pain and burning in the hand and arm got so intense that he passed out on the kitchen floor and I had to take him to the emergency room at the hospital. After seeing 6 doctors, who were totally stumped by his condition, we were led to a hand specialist who ran some tests, and agreed to do surgery in June of this year.
When the doctor opened up Bob's hand the ulna nerve and the median nerve were so compressed that they were in the shape of an hour glass. The doctor felt confident that the surgery would help. Fortunately, it did relieve the pain in his arm and shoulder, however, the hand is still numb and he has constant pain in his fingertips. It even hurts him to hold the newspaper.
He started physical therapy and continued to see the doctor on a weekly basis. After 3 months with no more progress the doctor said that he had RSD and would not be able to return to work. He recommended that Bob start Stellate Ganglion Block injections at a St. Louis pain center. Bob received the first injection in his neck, but nothing happened. He received the second injection and still nothing happened. The doctor said that that the injections were not working because his condition had gone untreated for so long. After a few weeks the pain started in his right hand so they gave him injections for that side, which did seem to help the pain and inflammation. Now, the pain has spread to his feet and he is being given more injections.
The Stellate Block injections seem to be affective if they are administered with the onset of pain. If the pain has been untreated for an extended amount of time, the problem gets to a point of no return.
We are now fighting Workers' Comp since Bob will never return to work and his disability pay has stopped. I can understand everyone's frustration since I have lived through this horrible illness with my husband for over a year. Doctor after doctor, hospital visit after hospital visit, physical therapy 3 times a week and seeing a therapist/counselor every other week. He finally started on anti-depressants this week; but we don't know where the pain will pop up next.
I have done extensive research on the subject, since very few doctors really understand RSD. Although, I am not the one experiencing the pain, it is very painful to see someone I love so much have to suffer with very little hope of a full recovery. Needless to say, I pray for his recovery. After all, miracles happen every day.

Danny - Hertfordshire, UK

I was first diagnosed with RSD one year after all my problems started . The initial problem was a serious leg condition called Compartment Syndrome in my left leg. I was rushed into hospital and had a Fasciotomy done, which is two huge surgical incisions into the muscle compartments in the lower leg. These wounds were left open to relieve the pressure which had blocked off the blood supply to my foot. At the time I was told how lucky I was not to have lost my leg - but now the leg is useless. Three weeks after surgery I began to get severe burning pain in my leg and, when I stood up, the leg turned blood red and all the tiny veins burst. I am now told this is when treatment of my RSD should have started. My consultant said this was a common side effect of the operation and who was I to argue ( I was eighteen at the time and very frightened). Ten weeks after the operation I was still in hospital with open wounds on my leg and a serious infection . Eventually after nearly twenty weeks I was allowed to go home but with open wounds and in extreme pain That was uncontrollable so they referred me to my current pain specialist who was appalled at the fact that the consultant failed to identify RSD. Now I have been seeing him for two years and I have been on Amytriptilene, Gabapentin and the other painkillers for about two years I also began a trial of Calcitonin injections. I have had 11 Guarnethidene Blocks, 9 Lignocaine Infusions, 12 Sympathetic Blocks and several week-long epidurals - but all of no benefit to me. I also have been to The Royal Free Hospital in London as a Case Study and I have been to the peripheral Neuropathy Unit in Hammersmith. All say I have severe RSD but all failed to treat it effectively. Now the condition has spread to my hips and left arm and I have been on crutches since the original operation. Why is my RSD so resistant to all the treatments I have received? Will I be like this forever? These are questions I ask myself every morning when I try to get myself out of bed, which is a great effort in itself. I am now Twenty and I wish I wasn't alive. My family know this and so do all my friends but none of them understands what RSD is like because they don't know how painful it actually is.