What is Reflex Sympathetic Dystrophy or RSD?
RSD is a chronic neurological syndrome characterized by severe burning pain, pathological changes in bone and skin, tissue swelling, and extreme sensitivity to touch. RSD is a malfunction of part of the nervous system. Nerves misfire, sending constant pain signals to the brain. It develops in response to an event the body regards as traumatic, such as an accident or a medical procedure. Reflex Sympathetic Dystrophy is also known as Complex Regional Pain Syndrome (CRPS).
It all started in August 2004 during band camp where I got a stress fracture in my left heel. I didn't do anything about it because I assumed my foot was just sore from all the marching, and sure enough, it started to feel better. It wasn't until the end of September that the pain returned when I started running in gym class. The first weekend of October brought a trip to the emergency room and a walking cast. I was recovering nicely for the first 3 weeks, and then things took a turn for the worse. My foot became so sensitive that I couldn't have anything touch it, not even a sheet, without being in total agony and screaming out in extreme pain. Even a car driving down the street caused extreme discomfort because I had become so sensitive to vibrations. I was diagnosed with RSD in November and started physical therapy right away. I went from a busy high school student, taking part in color guard, school musicals, and social activities, to just barely making it through the school day.
I continued to go to physical therapy for several months, but the RSD started spreading in February 2005. Over the course of a few months it spread to my entire left side. As a result, I began an intense physical rehabilitation program at A.I. duPont Hospital for Children for 7 hours a day instead of going to school at the end of April. This seemed to greatly reduce my pain, and I was off crutches for the first time since the previous October. Things were going really well for a few months, but at the beginning of my senior year of high school, the RSD started spreading again to my right side. At the end of September 2005, I got a flu shot, and at the end of the month, my right arm was completely paralyzed. This forced me to leave my part-time job at the farmer’s market that I had just recently begun. A month after that, I was rushed to the emergency room completely paralyzed. I was placed back in the intensive rehabilitation program and stayed there for the next few months.
For the next 4 months, I continued to recover from the paralysis even though the pain spread relentlessly to every part of my body, including internally. At the end of February 2006, when my school was testing the fire alarms, I became completely paralyzed again. I was able to finish out my high school career, despite all of this, and made my biggest accomplishment yet: I walked across the stage to receive my diploma! I continued to recover and live with the pain throughout my first year of college in handicapped accessible housing with a few complications and flare-ups.
In August 2007, I saw Dr. Robert Schwartzman at Hahnemann Hospital in Philadelphia. He recommended me for out-patient low dose Ketamine Infusion Therapy as well as an in-patient high dose Ketamine Infusion. My dates for the out-patient treatments were set for January 2008, and I was put on the waiting list for the in-patient Ketamine Infusion. Before I could even get the out-patient treatments, I hit rock bottom. My joints started deteriorating causing a subluxed knee cap; I was having trouble breathing with my limited lung capacity; and I was fainting almost every day, sometimes multiple times a day, because my body couldn't adjust my blood pressure. My memory was also affected when I would faint: I couldn't remember where I was, what I was doing, and even things from a few hours before I fainted.
Finally, my Ketamine Treatments started, but because of the fainting, they were put on hold for a few weeks. I saw a cardiologist, and he put me on a blood pressure medication that completely changed my life! I didn't have to worry anymore about making a short trip out to the grocery store that could potentially set me back for the rest of the day. I was able to resume my treatments, and I was no longer on crutches or in a wheelchair. I started my second semester of my sophomore year of college a few weeks late, but I made it through the rest of the school year with continuing booster treatments.
It was during one of these booster treatments in early 2008 that Dr. Schwartzman recommended me for the Ketamine Coma Treatment. He told me that he no longer thought that the in-patient treatment here in the United States would be enough. I started getting migraines and received a cervical nerve block. This only seemed to make the situation worse.
I underwent the Ketamine Coma Procedure in Monterrey, Mexico in March of 2010. While I did not get a full remission, I had amazing results. After months of pool physical therapy, I was able to walk again without any assistive devices, return to school to complete my degree, and I was off all of my pain medications. The RSD symptoms continued to persist and flare-up, and this was because my wisdom teeth were pressing on nerves. In July 2011, I travelled back to Monterrey, Mexico to have my wisdom teeth removed and receive high dose ketamine boosters to control the pain after surgery. I returned from Mexico a new person and feeling better than I ever had! I was in the least amount of pain I had ever been in; I was able to get the puppy I had wanted for so long; and I was even able to attend a Taylor Swift concert with my mom!
Unfortunately, I suffered complications shortly after my return from Mexico. As part of my treatment, I needed to continue with low dose infusions in Philadelphia to control the pain and keep me stable. When I went for the first infusion, it took 5 tries to gain IV access because my veins are almost impossible to access anymore, and this sent me into a full flare-up of my RSD symptoms. Since then, my RSD has been progressing to the point where I am back on pain medications, in the wheelchair full-time, and eating and drinking are very painful activities because my GI tract is so sensitive. I need to have a port placed in my chest to be able to get the ketamine treatments again. I also need a series of 5 days of high doses of ketamine to calm my symptoms down. In the United States, this would cost over $30,000, and it is not covered by insurance. The cost of having the same thing done in Mexico is estimated to be $15,000. I have chosen to return to Mexico, not only because of the price difference, but because of the amazing care and miracles I have experienced there in the past.