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| Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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10-06-2006, 02:49 PM
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Hi, I got an email with a success story so I'm posting it here. I know lots have not been helped by the SCS, so that is not the main reason I'm posting it, it is the fact that RSD is getting in the Michigan's public
eye!!:D  In case the link doesn't work, I copy/pasted the article: http://www.mlive.com/news/aanews/ind...361.xml&coll=2 http://www.mlive.com/news/aanews/ind...361.xml&coll=2 ANN ARBOR NEWS Teen RSD patient educates others Treatments at Cleveland Clinic have put disease in remission Wednesday, October 04, 2006 BY JO COLLINS MATHIS News Staff Reporter Life is so good right now for 15-year-old Jordan Keen that she's going to throw a party Saturday night to celebrate. On tap for the evening's entertainment? The burning of the crutches she no longer needs. Jordan, of Dexter, was 12 when she twisted her knee while skiing in January 2004. Because the pain never stopped after the accident, her parents took her to one specialist after another, including a surgeon at a children's hospital in Orlando, Fla. They all said the same thing: There was nothing wrong with her leg. It must be in her mind. Even some of the kids at Dexter's Mill Creek school were convinced she was faking it and would purposely bump into her crutches to prove it. "That would send me through the roof!'' said Jordan, now a 10th-grader at Dexter High School. "On a scale of 10, the pain was an 8 or 9.'' "When are you getting rid of your crutches?'' the kids would ask. Her answer was always the same: "ASAP.'' Her parents, Sue and Doug Keen, believed in their daughter, an athletic over-achiever who would never want to be on crutches or in a wheelchair if not for the intense pain she felt whenever she put weight on her knee. So they kept searching for an answer. "Nobody said anything about RSD,'' said Doug Keen, a pilot with Spirit Airlines. "And we went everywhere.'' Finally, about a year after her injury, a retired physician who worked once a week in the orthopedics department at St. Joseph Mercy Hospital suggested that it could be reflex sympathetic dystrophy syndrome, a nervous system malfunction that causes relentless pain, tissue swelling and extreme sensitivity to touch. While researching RSD on the Internet, the family learned about the Cleveland Clinic Pain Clinic, which now refers to RSD as complex regional pain syndrome, or CRPS, according to its Web site. It took months to be admitted to the Cleveland Clinic, but Jordan finally got in nine months ago and was there for six weeks. She underwent physical and drug therapy and psychological counseling to help her deal with the pain. For some patients, that's enough. But what made the difference for Jordan was a spinal stimulator, which sent electrical signals to her spinal column. Those signals blocked the pain signals Jordan's system was receiving. Jordan is in total remission now, but she has to be careful. To prevent another injury that could lead to a flare-up of RSD, she doesn't run. She wanted to try out for the basketball team but realized she should stick to helping manage the team. An active member of the YMCA in Ann Arbor, she enjoys swimming, riding her bike and playing percussion in the Dexter High School marching band. "I feel amazing,'' she said Monday night during a phone conversation on the way home from band practice. "I'm pain-free, going to school like a normal kid.'' Doctors in Cleveland told her she probably had RSD when she was as young as 3. That's when she sprained an ankle and was in so much pain that she resorted to crawling on the ground for several months. Jordan is so grateful to be pain-free again that she's telling everyone who'll listen about RSD in hopes that others won't have to suffer through what she did for so many painful months. She's created a PowerPoint slide presentation about RSD, which she's already shown to one physician. "The doctors were telling me I was psycho, and I knew I wasn't psycho,'' she said. "I want to teach all doctors that if there's nothing wrong with you orthopedically, it doesn't mean you're fine. There could be the hidden things, like RSD. I want to help educate everybody about it.'' Jordan learned about Rachel Schneemann, a 12-year-old Pittsfield Township resident with a severe case of RSD, when a friend of the Keen family happened to talk to Rachel's mother while they were each buying coffee at the hospital. "I loved meeting Rachel,'' Jordan said. "It was so amazing because when I was where she is, I wanted to have someone who knew what was going on. I wanted to hug her and tell her it was going to be OK.'' Jordan did get to tell Rachel it will be OK. But she, more than anyone, knew this: The hug will have to wait. Jo Mathis can be reached at jmathis@annarbornews.com or 734-994-6849 I wonder how many of us could get a local newspaper to print our story. I posted another newspaper article from a Michigan newpaper yesterday: http://www.michronicleonline.com/art...with-pain.html http://www.michronicleonline.com/art...with-pain.html See, this is why there is..........Hope !! Last edited by HopeLivesHere; 10-06-2006 at 02:54 PM. Reason: forgot link |
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RSD in the Newspaper - You Go Michigan!!!
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