thank you! - Reflex Sympathetic Dystrophy Association of America

More documents

Recommendations

Info

Mailbag Dear Jim, Thanks for the story from John. He obviously made an impressive recovery and this is a story of hope. From the medical science point of view there are many pieces of info missing so this is at best an anecdotal case. But in reality, the experience of one person just confirms what we knew all along: that the best treatment for any chronic pain patient, including RSD sufferers, is a multidisciplinary comprehensive approach which is clearly outlined in John’s story. Another fact that is apparent here is that even though the physicians in China did not understand RSD, they treated the patient based on their best judgments and upon generally accepted principles. They key here is “intense therapy,” which is too often the missing link here in the US. How many times have we seen our enthusiastic approach to treating the condition frustrated by insurance and other third party restrictions? Notwithstanding the above, I think the program at the Tianjing Regional Medical Center deserves a second look, to see if they have other similar cases of success. There is definitely something we can learn from in this case. Best, Jeffrey Ngeow, MD Clinical Associate Professor of Anesthesiology, Weill Medical College of Cornell University Dear Jim: I hope this letter finds you well. Your commitment to this organization is astounding. There was no RSDSA when I was first diagnosed in May 1988. There were, but a few minuscule gripe groups. We were a haphazard bunch back in those days, who were just lucky to find each other and an ear to chew. You have diligently pulled us together, and instead of allowing us to weep and wallow in our despair, you have formed a loud, progressive and reverberating organization. You have put us on the medical and political maps. Thank you. A few days ago I received the latest edition of the RSDSA Review (Volume 20, Issue 2). The Clinical Q and A with Dr. Prager hit an emotional button, and I felt I needed to share my own experience with pregnancy and RSD. In February 1992, after years of surgeries, oral and intravenous medications, psychologists, psychiatrists, occupational and physical therapies, experimental treatments… and on the advice of Dr. Robert Schwartzman (2 years earlier) I went ahead and had a morphine pump implanted. Needless to say, the morphine pump was in its infancy for RSD back then, but I also knew that my various oral medications, including a patch, were not allowing me to lead a life and be a participant of any sort in my communities. The pump, which has not always been a smooth and reliable partner in life, later allowed me to marry and in 1994 become pregnant. Today I have a beautiful, sometimes arrogant and sassy preteen daughter, who would not be here without my morphine pump. I think Dr. Prager offers some terrific advice, but did not discuss the possibility of the morphine pump. Do not think the pump let us imagine we were out of trouble. We spent tremendous time discussing our venture with Dr. Schwartzman, Dr. Howard Rosner, and various neonatal specialists as well as psychologists and high-risk OB-GYNs. We knew this would be considered a high risk pregnancy (I was 36 at the time, you do the math now), and had a birth plan in place as a cesarean would be necessary if I could not deliver naturally. I couldn’t take the chance of an epidural with my catheter. There was far greater concern for me than the baby, though he/she would be medically scrutinized. You should know, there was no information available at the time concerning RSD and pregnancy/delivery. I always did like the idea of being a leader. I have to assume that almost 13 years later we have more knowledge and experience to offer women and couples who are considering pregnancy. The bigger concern is not only the effects of opiates on the fetus, but the effect of fertility in general. And as Dr. Prager points out, when deliberating parenthood, you must take into consideration your health and pain management support system. No plan is perfect and life throws us sour cherries, but ultimately only the person can sort out the questions; the answers are never clear. Again, wishing you the best and hope to see you in the near future. n Regards, Laurie 8 RSDSA Review: Vol. 20, Issue 3
My relationship with RSD has changed over time. Before I was diagnosed and was going from doctor to doctor, I was terribly frightened. I was experiencing intense pain and symptoms that made no sense either to me or to the doctors I was seeing. Finally after several years, I was given a diagnosis. I had a disease that some doctors knew about, that others were suffering from, and for which there were treatments available. Despite my suffering, I was hopeful. Just when I thought things couldn’t get any worse, I developed an autoimmune disease. The first obvious symptom was the pain from my RSD was the worst pain I could feel, but this was much worse. I have had many operations to clear away the gangrene, but unfortunately, the affected areas covering the initial site of RSD will not heal, and I will need skin grafts. To my many RSD medications, I have now added prednisone and methotrexate; the methotrexate is an immunosuppressant drug used for cancer. It supresses the immune system and leaves you open to all kinds of infections. Armed with a diagnosis, I visited the web and found RSDSA. I went to a symposium in Atlantic City—it seems like eons ago—where I met others like myself, heard doctors speak about RSD, and connected to some very special people. My life was really beginning to look up, and for the first time I felt that I would find a doctor with a treatment plan to help me. When I finally found a doctor knowledgeable in RSD, I was amazed at how many treatment options were available. I read as much as I could. The RSDSA newsletter and website were invaluable. There were so many stories of others with RSD who, while not cured, were able to resume their former activities with much lower pain levels. If they could beat this thing, then so could I. As the years went by, I tried every treatment I could find, short of ketamine. Some would help for a day or so, and some not at all. Instead of getting better, things got worse. One day I woke up and realized that I was no longer 45, but somehow was now in my 60s. I was battling arthritis, severe osteoporosis and breaking bones. I spent long stretches in a wheel chair, although most of the time I used a walker. The RSD had spread to both legs and with the added years, having the energy to wheel myself around was getting harder. There were no longer new treatments to try, so maintaining an optimistic outlook became more and more difficult. When RSD Hits a New Phase By Linda Lang “My life was really beginning to look up, and for the first time I felt that I would find a doctor with a treatment plan to help me.” when I developed vasculitis on my legs. My body was attacking my own skin, becoming gangrenous and exposing the nerves in large areas where there was no longer skin to protect them. I had thought I now spend a lot of time in bed because walking is so difficult. My lungs have also become involved and dealing with both diseases can be overwhelming. I have only spoken to one other person who is dealing with the same issues I am. Not much data has been collected about what is happening to those who have long-standing RSD, and who are now into our 60s or older. I’m sure that there are others out there like me and I would sure love to hear from you. RSDSA has done a wonderful job supporting those who are newly diagnosed or have suffered for a few years. We can now gather information from those who have had RSD for over 10 years and have not found relief, and are experiencing the normal problems of aging, or developed other serious diseases. We can begin to have the same support for this segment of RSDer’s as well. We can share information on how each of us manages to cope (or not) with this new phase of RSD, which might go a long way to ease our suffering. It also can give doctors new information about the directions RSD takes to help us better. Please help us to help you. E-mail your stories. Remember how you felt when you were first diagnosed and got to meet or hear about others who were experiencing the same things as you. I know for me it eased the feeling of being alone in this battle, and gave me so much comfort and hope. With your help, we could do the same thing again for those who are finding it so much harder to be hopeful! n 9
Page 1 and 2: Volume 20, Issue 3 R e f l e x S y
Page 3 and 4: (Continued from page 1) The Puerto
Page 5 and 6: RSDSANEWSRSDSANEWSRSDSANEWS Rock Ou
Page 7: fere with any further treatments. N
Page 11 and 12: less distress. A patient may habitu
Page 13 and 14: Conclusions These data suggest that
Page 15 and 16: Since hyperalgesia is an important
Page 17 and 18: call them “after thinkers.” Aft
Page 19 and 20: $1,500 and Above Ronald P. Goldfade

thank you! - Reflex Sympathetic Dystrophy Association of America

You also want an ePaper? Increase the reach of your titles

Delete template?

Save as template?