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Story Board
personal stories and notes from our correspondents |
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Vickie HolcombI have been diagnosed with RSD after having a total knee replacement. My knee will just not stop hurting. Right now I am taking shots in my back for this. I have been in theraphy since I hurt my knee in May of 2002, but nothing helps. I had arthoscopic surgery in July of2002 and then a total knee replacement in October of 2002. Just wondering if anyone else has been diagnosed with RSD after knee surgery. After reading some of the letters I can really relate to how they feel. Mike - Laurel, GeorgiaI was pitching fast pitch softball when my coach took me out in the last inning and sent me to first base. All of a sudden I was getting this real sharp pain in my left wrist. It kept getting worse. I told my parents and the next day we went and saw our family doctor. He thought it wasn't really anything except for maybe a sprain, but he sent me to an orthopaedic surgeon just to make sure. I went and he looked at my hand and he ordered an x-ray and diagnosed me with tendonitis and he put me in a cast. I was screaming and crying in pain while I was in the cast. When it was time for me to get the cast off we told him about how much pain I was in when I was in the cast, so he ordered a MRI. He also had me in Occupational Therapy. He didn't see anything. He finally gave up and sent me to another orthopaedic surgeon who said the MRI wasn't done good, so he ordered another one plus a bone scan and put my in a brace. He didn't see anything in either one of them so he told my dad over the phone that it was all in my head. We got my MRI's and went back to our family doctor. He looked at them and said he thought I looked like I might have nerve damage and he sent me to a neurologist. We went and saw him and he had a muscle test and a nerve test done on me when he diagnosed me with RSDS and a pinch nerve in my elbow on my funny bone. He had me on a lot of drugs. He had me on drugs that a person under the age of 18 shouldn't have and he knew it. My dad wondered about it and he called him and the doctor told the nurse that it was nothing. I'm only 14. I was doing worse on the drugs and the doctor wouldn't listen to us. He sent me back to OT and he had 3 nerve blocks done on me. The blocks didn't help. Then I developed tremors in my left hand. He said it was psychological and sent me to a neuro-psychologist. I saw him twice and said I was never seeing him again and I decided to get off all the drugs cause I kept falling down or hitting my bad arm. So then a friend of my dads referred us to a neurologist at a hospital. We went and he looked at me, squeezed my wrist as hard as he could and asked if that hurt. He said nothing was wrong with me. So we went back to our family doctor and then sent me to Emory Paediatrics and I saw the head paediatrics neurologist there. He had an EMG and muscle test done. Said I had a pinched nerve in my neck and 25 to 30% of the ulna nerve damaged in my left arm and also with RSDS. He put me on 3 Advil 3 times a day and Neurontin. I took 3 Advil 3 times a day for a year and I only saw the doctor about 4 or 5 times. I saw another doctor there who was filling in for him when he was gone. She didn't help either. They had me in Physical Therapy for about 7 months. That didn't help. We were getting upset with my school because they weren't understanding my problem. So we made the mistake of telling my doctor that we were going to apply for hospital homebound and he called the social worker at where I used to have my PT at and she called the school telling them I should be in school. My doctor also said that he didn't believe in RSDS. So after a while we went to another pain clinic. It's the same one my grandmother goes too. So we went and he ordered a Stellate Ganglion Block and he took me off the Advil and put me on bextra. My family doctor put me on Welbutrin. I am now taking 3 600mg. of Neurontin a day, 2 bextras, and 1 Welbutrin. I have had 5 SGB. This all has been going on since February of 2001. The blocks only work temporarily. If the one I just had and the next 1 don't last longer or work better we might do a SCS (Spinal Chord Stimulator). Penny - New JerseyPenny's story has been updated and expanded. Read her heartfelt plea for more action to increase RSD awareness - click here |
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