My name is Matthew Thacker. I am sixteen years old, five foot eleven and one-hundred and seventy pounds. I am a three sport athlete, and I have RSD. I first experienced symptoms of RSD/CRPS in 2008, while I was on a family vacation to New Orleans. As the pain worsened and spread, (moving from my right shoulder to my neck, back, and eventually left shoulder) I was shunted from doctor to doctor. Each more dumbfounded or convinced I was faking then the last. Eventually one flustered orthopedist diagnosed me with a “muscle strain” and sent me to physical therapy in what I am sure he conceived to be a placebo treatment for my non-existent injury. It was there, in OrthosportsMed Physical Therapy at the hands of a man named Kipp Dye that my story turned for the brighter.
Succeeding where all those doctors had failed, Kipp correctly diagnosed me after just two sessions, and together we began a serious treatment regime. I had PT at Orthosports five days a week for the next three months, and due to his quick diagnosis (within two months of onset of symptoms) we were able to make significant progress. So much progress, in fact, that I decided to go away to camp that summer, a mistake that would push my pain to the worst point it has ever been. Three weeks into my eight-week session of camp my pain, which in the absence of regular PT had redoubled its efforts to cripple me, became so intense that I had to return home. I resumed daily sessions with Kipp and after a few weeks entered the Mayo Family Pediatric Pain Rehabilitation center, or PPRC. The PPRC is an intensive treatment program housed in the Waltham branch of Children’s Hospital Boston that combines physical, occupational, and cognitive behavioral therapy in a multifaceted approach designed to ‘shock and awe’ the RSD into normality. This approach has had mixed results; I know just as many PPRC graduates for whom the program had little or negative lasting impact on their RSD as I do those for whom it brought significant relief. For me, however, the program was nothing but good. I went in with no mobility in either of my arms and allodynia so bad standing in the wind was nigh unbearable, and after four weeks under the guidance of Dr. David Leslie (an incredible physician who is without a doubt the most competent RSD related doctor I have ever met) left with full mobility and drastically reduced sensitivity. The PPRC was so effective for me that two weeks after I graduated I entered full contact football practice.
Here we arrive at what I believe keeps my RSD in check to this day. In seventh grade I played football (although the season was cut short by an early injury), in eighth football and lacrosse, and my freshman year added wrestling to round out the lineup. I play contact sports six, sometimes seven days a week (although I will miss football season this fall due to an injury sustained during summer wrestling) and I believe that there is no better desensitization in the world. Thanks to these sports and regular doses of Gabapentin my pain is manageable. It is still a constant presence, but it no longer dictates my life. It is at a level where I am able to push through it and finish the match, lay the big hit, or win that last sprint. All things that were, for all intents and purposes inconceivable to me the summer of ’08.
While this approach has certainly produced results for me, I am not saying that all of you out there suffering from this terrible disease should show up at football tryouts next August. Everyone’s pain is in a different place, and what worked so well for me to get me to the place where I could play these sports, the PPRC, may not work at all for you. I was incredibly blessed, not only to have found Kipp and been diagnosed so early on, but also to have had such dynamic success at the PPRC. All I can say to those of you still kept down by your pain is that it can and will get better, and that once it does, you need to do all you can to keep it that way.
I would like to close with one last recommendation and quite a few thank yous. In terms of recommendations I have found Epsom salt baths to be both an incredible tool for managing pain, and hardly ever mentioned by anyone else. I buy the six pound bags at CVS, and when the pain starts to climb simply pour some into a hot bath and let them do their wonders. They are by far the most effective tool I have come across for providing short term relief of RSD pain, and something I would recommend to any and all RSD patients. In terms of thank yous, I would like to begin by thanking Kipp Dye and David Leslie for their invaluable care; without either of them I do not believe I would be even close to where I am today. I want to thank the PPRC staff: Gloria, Emily, Katie, Melinda, Kristen, Laura, and Judy for giving my treatment everything they had and then some. I want to thank those who shared my suffering in those brightly colored hallways: Olivia, Rebecca, Alex, Karen and Lizzie. You guys made those long painful weeks so much more bearable. I want to thank the other PPRC graduates whose time there either predated or came after my own but whose support since then has been invaluable: Jodi, Sarah, Annie, Jennessa, Emily, and Alyssa. Each and every one of these women are some of the most amazing and inspiring people I have the privilege of knowing. I want to thank Sue and Chuck Pinkham, Carol and Don Seaman, Aurora and Steve Richards, Deb Jose, and all their assorted families whose tireless work ethic has made many a yard sale and now TCAPP possible. I know of no bigger crusaders in the name of RSD than these people. Last but not least, I would like to thank my family. I want to thank my loving siblings Caroline and Willie for all their support during the darkest times in my life. I want to thank my wonderful father Strom for all those late night PPRC prescribed laps around Cabot field as well as all the love and care over the years. Finally I want to thank my incredible mother Isabelle for all those hours spent on the phone with Blue Cross “convincing” them to pay for my care, and for love and support she has shown me time and time again over the years. When the going got tough, my family got going. Thank you all so much.
Posted on Thu, March 28, 2013
by Tracy Butenhoff