I was born in Arlington, Virginia but grew up primarily in Fairfield, Adams County, Pennsylvania; a rural town just west of Gettysburg, near the Maryland border. During elementary school and the first part of high school, I was active in Girl Scouts, Chorus, and 4-H.

I was a daredevil when I was young, and as a result ended up with lots of sprains, strains, and broken bones. Maybe that’s not too unusual, but then I started having pain episodes when I was 6 or 7 – first with chest pains and difficulty breathing (like a heart attack), then with migraines that would last weeks or months. The doctors ran lots of tests, but couldn’t find anything. My pediatrician, Dr. Bradley Hoch, called me his “medical mystery.” I missed a lot of school and spent a lot of time in various hospitals. Things got better around 8th grade, and I was back in school. As a freshman in High School, I was in Chorus, joined the cross-country team, and became a Junior Firefighter with Fairfield Fire & EMS.

One day in 1999, when I was 13, my older brother and I got in an argument in the car and he squeezed my fingers together. The next day, my forearm and hand were dark blue and was in a lot of pain. My doctor sent me to the local emergency room, and they sent me to Hershey Medical Center. None of the doctors could figure out what was wrong, until Dr. Brandt Groh, a rheumatologist, happened to be walking by and overheard them talking about my symptoms. He asked if he could take a look, and once he saw my arm he said it looked like a classic case of Reflex Sympathetic Dystrophy (RSD).

Dr. Groh started treating me for the RSD. After six months of hard physical therapy, my arm was back to normal. Finally, I was able to do everything that any other kid my age could do.

I was very active with the fire company. I helped quite a bit with fire prevention activities, especially at the local elementary school. I received an award for the amount of training I received as a junior member. In the summer of 2001, I took a job with a company that was training the Urban Search and Rescue teams (the same teams that later that year responded to the World Trade Center and the Pentagon). I was basically a “go-fer”, but I also got to be a “victim” in tunnels and makeshift piles of rubble during training exercises for the rescuers.

Then, on September 6, 2001, something happened that changed my life. I hit my right ankle on a metal bar that holds up the school bus seats. It was no big deal at the time. Over the next few days, however, my ankle became swollen and turned a dark purple; when you touched it, it felt ice cold. I could not walk on it because of the pain. We went to a specialist at Hershey Medical Center and he decided to put me in the hospital there. I was in the hospital there for 5 days. During that time my ankle and foot became even more swollen, and I would not let anyone touch my lower leg because it just made the pain worse. That was also when my foot started to turn inward.

After I left the hospital my foot continued to turn in. I went to physical therapy, but they “gave up” because they could not do anything to help me. In January 2002, I was admitted to Children’s Hospital of Philadelphia for two weeks. We left when a doctor and nurse said that there was nothing wrong with me and that “It’s all in your head.” I went to another physical therapist, but my foot started getting worse again. That therapist finally gave up, too, and said that he could not do anything else.

Life went on, and my foot just got worse. I missed almost all of my junior year of high school, but I did my schoolwork at home and still somehow managed to get A’s and B’s despite the massive pain I was in. I had a goal – to walk across the stage to receive my diploma at my high school graduation. Over the summer, I was admitted to Kennedy-Krieger Children’s Rehab Hospital (a part of Johns Hopkins Hospital) for a month. That hospital stay ended up helping me a lot. The swelling in my foot went down to an almost normal size, and the color returned nearly to normal. I also built up a higher tolerance to the pain. They said that I would have to have surgery to straighten my foot, and there was no guarantee that the pain would go away. That surgery was done in December 2002, and after two more adjustments to straighten it, my foot was almost straight. I was fitted with a brace to help keep it from turning in again.

I worked hard during physical therapy, and was learning how to walk again with crutches. Then, in March, I hit my left knee on a desk at home. Before long the muscles had locked up – I could not bend or straighten it. It was the RSD again. Walking on crutches became almost impossible. I did manage to reach my goal – I was able to get out of my wheelchair when they called my name at graduation and used my crutches to “hop” across the stage, but it wasn’t the kind of “walking” I had hoped for.

As time went on, things stabilized. The RSD wasn’t getting worse, but it wasn’t getting better, either. I was learning to adapt to the excruciating pain in my right lower leg/ankle/foot and to my left knee, which wouldn’t straighten. After special training I was able to get my driver’s license, though it had a restriction – I have to use a left foot accelerator.

During the summer after graduation, I had what the doctors thought was appendicitis. I had surgery, and the anesthesiologist used ketamine as the medication to put me under general anesthesia. After the surgery, the doctors told my parents that when I went “under”, my knee straightened out and my foot returned to normal, but went back to their pre-surgery state when I was coming out of anesthesia. They said that there was no way it could have been voluntary – that was the first time we realized that ketamine had an effect on my RSD.

I made it through four years of college at Millersville University of Pennsylvania – again one of the only students in a wheelchair. It was uncomfortable and made life difficult for me and for others. Thanks to the Pennsylvania Office of Vocational Rehabilitation, I was able to get a motorized scooter. I graduated in 2007 with a double major – English and Philosophy, and a minor in Criminology. Millersville was only about 1-1/2 hours from home, and I came home almost every other weekend. I had very little social interaction at college, because it took all I could do to focus on my studies.

As time went on, it became harder and harder to concentrate. Part of the reason it was getting harder to concentrate is because my RSD started getting worse. During the summer of 2006 I fell on my foot when I was rushing (on crutches) to rescue my brother’s new puppy that had gotten stuck under the chain link fence in our yard and was choking. Don’t worry, I saved him; but as a result the pain increased and my foot started turning in again. Dr. Groh wanted to be aggressive with the treatment, so he sent me to the new pain management physician at Hershey Medical Center, Dr. Yakov Vorobeychik. It only took Dr. Vorobeychik a minute to say that I needed to be seen by Dr. Robert Schwartzman at Drexel University College of Medicine. We knew of Dr. Schwartzman and his work with ketamine, and I hoped to have an opportunity to be part of the studies (since ketamine seemed to work temporarily when I had my appendix out).

Dr. Schwartzman evaluated me in July 2006, and he said that I had full-body RSD but that it was primarily affecting my legs. He said that I needed some minor nerve surgery on my scars from my foot-straightening surgery before he could do a lidocaine or ketamine infusion, and that I should have that done by Dr. Richman at the Hospital for Special Surgery in New York City. Dr. Richman evaluated me in the fall and did the surgery in December; again, ketamine was used as the anesthetic and it had the same positive affect as before.

We battled with insurance companies trying to get approval for lidocaine infusion therapy for almost a year, but to no avail. Finally Dr. Schwartzman’s office agreed to go straight to the ketamine infusion therapy (which was covered by insurance). I went through the two-week outpatient process in early July 2007, with 2-day boosters after two weeks, a month, 3 months, and six months. During the infusion therapy, my foot and knee returned almost to normal; when the ketamine was stopped, my foot and knee returned to their RSD state. Dr. Schwartzman said that I was a prime candidate for the ketamine coma treatment, since ketamine obviously works, but it’s a matter of how much ketamine I needed and for how long I would need it. I was happy to be put on the waiting list.

In the mean time, I started graduate school at the University of Pittsburgh. I got an apartment just off campus – expensive, but close enough so I could use my scooter to get to and from classes. I was in the Master of Social Work program, and got a field placement at United Cerebral Palsy (UCP) of Pittsburgh (also within scootering distance from my apartment). School was no longer close enough to go home every other weekend, so I really was on my own. The first semester went okay, but it was difficult trying to keep up an apartment, study, work, and deal with the pain. The second semester was more difficult, and I started missing more and more classes because of the pain. Keeping up with schoolwork was also hard, because I couldn’t concentrate because of the pain and the pain medication. I wasn’t able to drive anymore. I couldn’t quite finish the semester, and have had to take a medical leave of absence from Pitt until I can get the RSD under control.

I have moved in with my parents (now living in Christiansburg, Virginia), because I just can’t make it on my own right now. Hopefully, this is temporary. Dr. Schwartzman’s office said that I should be going to Germany for the ketamine coma treatment this November, and if it works, I should be able to be back on my own early next year.

I hope I will be able to continue working toward earning a Master of Social Work and becoming a social worker so that I can help children who have encountered difficult times in their lives. That is my goal. But that is not my dream. My dream is that I will be able to walk again, pain free. And I want more than anything for this dream to come true!

If there is one thing I have learned from this, it is to never give up hope. I might not ever be completely rid of the pain, but hopefully I will be able to walk again. Any minor injury for the rest of my life could cause another episode of RSD, but I am stronger now because of what I am going through. I did not choose to be afflicted with RSD, but I have chosen to deal with it and make something of my life in spite of it.

Brandy N. Sachs
August 2008

 
Addendum, November 2008:

I received the call from Dr. Schwartzman’s office in mid-September saying that I needed to be in Saarbrucken, Germany for the treatment on October 3.  That wasn’t much time to prepare, considering we thought we’d have another month before we went!  We made all the arrangements and left home on September 29, and returned on November 6.  All the details are in the blog my parents kept, which you can see on this website.  Thanks to everyone for all the thoughts and prayers, and for all the comments on the blog!  And thanks to Ralph, Tina, Dr. Rohr, and the nursing staff at Klinikum Saarbrucken in Germany, and to my coma partner Elizabeth and her mom Lynn for helping out so much before, during, and after the treatment!

So far, almost a month after the coma treatment, I am RSD-pain free.  I have lots of aches and pains – muscle pains, mostly – all of which is normal after the ketamine coma treatment.  My pain tolerance, which was so high before, is now very low.  I also tire out very easily.  With special shoes I got in Germany after the treatment, I can walk a little with a walker.  It wears me out to do it, but over time my stamina and my muscle tone will increase.  Other folks about my age who have gone through the treatment have taken 6 months to a year to get back to full strength.  An added benefit to the treatment is that my brain is clearer -  no longer clouded with all the RSD pain.  My emotions are also returning; I laugh a lot more than I used to.

I have to be very careful, because the RSD could return if I get hurt again.  The risk decreases after a year, but will always be there.  I was the 55th RSD patient to go through the ketamine coma treatment in Germany, and at least 3 patients before me were pain-free before getting hurt again and re-triggering the RSD.  (One has even gone back to Germany for a second ketamine coma treatment.)  But I can’t live in a bubble or be wrapped with bubble-wrap (like my mom wants), so I’ll just have to be careful.  In spite of finishing college and some grad school, I missed most of my teenage years and I have a lot of catching up to do!

Brandy