Twenty five months ago my life began to change completely. It was at that time that I began to develop symptoms of RSD. Before RSD, I was very active. I remember when my husband and I first got married and were moving into our apartment. My father-in-law made the comment that I was small but very strong for my size. I am about 5'5", and at that time was about 100 pounds. I never thought of myself as being really strong, but looking back on it I was able to get lots of things done. I could move things around, carry heavy boxes, and rearrange rooms single-handedly without any difficulty (often to my husband’s surprise when he came home!). My husband is 6'5". So, our children have been pretty good sized too. When our 11-year-old child was born I remember ladies in church joking about how big she was compared to me as her mom. I would carry her proudly on one hip while I carried a car seat, grocery bag, or whatever else in the other hand.
We've had three more children since then, the oldest is now 11 and the youngest is two. My fourth pregnancy was very difficult. I was not on bed rest, but I was told to stay off my feet as much as possible. The pregnancy culminated in a C-section. I had our second child via C-section as well, but I recovered well from that delivery. I never seemed to bounce back after the last C-section. I was more tired and had pain longer than before. I had some pain in my shoulder when I used the computer but I did not think much of it at the time. Everything changed one day when I was mopping the kitchen floor. All of a sudden I had a strange sensation radiate upward from the left shoulder, through my neck and into my face. The left side of my face was completely numb.
Knowing that facial numbness was not natural, I made an appointment with our family doctor. He did not think that the shoulder pain and facial numbness to be related. (I've learned since that even very competent physicians are often not able to accurately diagnose neurological problems.) However, my family doctor did prescribe the right follow-up. He ordered an MRI of my brain to rule out MS and a brain tumor. I had neither of those. I tried a chiropractor and a physical therapist -- both made me much worse. (Since I've learned that many people with RSD are actually made worse before they're diagnosed.)
A family friend who is a physician recommended that we see Dr. Schwartzman, Professor of Neurology at Drexel University in Philadelphia. He said that Dr. Schwartzman was one of the best neurologists in the country. We made the appointment with Dr. Schwartzman and were encouraged that it was only going to take us four months to get in to see him. Honestly, we hoped everything would blow over by then. However, the time to see Dr. Schwartzman arrived and I was getting worse.
When I saw Dr. Schwartzman it had been four months since my face went numb mopping. By that time I had pain in my left arm, left leg, left foot. I'd never heard of RSD. He said I had a brachial plexus injury and an injury to a nerve in my back. He recommended a special physical therapist in Philadelphia who works with neurological patients. He also ordered some tests. I began physical therapy and received slight relief from the sessions. The therapist used special therapy techniques which loosened up my neck. Overall the therapy did not help. I had one incident with a tens unit that put me in bed for three days straight of intense pain and swelling. June of 2009 arrived and it was time to see Dr. Schwartzman again.
By this time I was on 900 mg of Gabapentin and taking Celebrex regularly. But, I was experiencing more pain all over my body, swelling in my left eyelid, face, and arm. My left thigh was now numb. Dr. Schwartzman took note of the pain spreading throughout my left side. He also noticed changes in my skin, the way that my left foot positioned itself at rest, and my sensitivity to pain. He diagnosed me with RSD that day, and recommended that I receive 10 day outpatient low-dose ketamine infusions. Dr. Schwartzman said in his office that day that the only known cure for RSD was the ketamine coma. But, he'd seen patients gain significant relief from the outpatient treatments.
My husband had driven me to this appointment and was parked on the street with our four children in the car. Before leaving the office I called him on the cell phone and told him I was diagnosed with RSD. When I left the office I began to cry. He could see me walking down the street crying. He cried too. By this time we had already learned more about what RSD was and knew that it could be horrific. We felt devastated. Our eight-year-old son was diagnosed with cystic fibrosis at birth. But, neither of us ever expected that one of us would be diagnosed with a chronic illness as well. We drove home that day feeling overwhelmed but knowing in our minds that somehow God had a plan to work all of this for our good and his glory. Since then, we have both learned that God uses suffering to take the things that we know in our head and place them in our hearts.
Through an amazing series of events I was able to be evaluated and approved for the 10 day outpatient ketamine infusion therapy after only a couple of months. I received the treatment in September. By the time I receive these outpatient infusions in September, everything seemed to hurt all the time. I could not pull out drawers, hold my children, lift anything at all, or remove the childproof tops from my son’s and my medication bottles without pain. At times I needed help with these tasks. I was fearful of going places in public because if I was touched I would not only hurt immediately but for days after. People heard that I had some sort of new and devastating chronic illness. Of course they wanted to reach out and touch me to comfort me. It was especially difficult as the wife of a pastor to convey to the church that we wanted their love and support but not their touch. I later learned that the psychosocial dimension of RSD is hard for everybody. You cannot go into crowds without being afraid of being injured, hurt, or misunderstood by others because of your fear. It was also heartbreaking, and still is, not to be able to have my small children sit in my lap and give them a big hug. Or, have them give me a big hug. (When we first mentioned the possibility of the ketamine coma to our four-year-old she said, “Yea! If you get better than you can give me a hug and hold me.”)
The ten-day ketamine infusions did have an initial positive impact. Those with a careful eye noticed that my appearance changed. My swelling went down especially. Sadly, the treatments only helped marginally with my pain. And, my overall function continued to decline. Over the months that followed new problems emerged. The pain began to spread to my right side. I began to have problems swallowing. The swallowing problems have continued. Today if I have any significant activity (which is now limited to walking) I have trouble swallowing. I have a Master’s degree in speech pathology and have worked with patients with swallowing problems before. I could not believe that this was happening to me, nor could my family. There have been many meals which my husband has asked if I did not like what we were eating, because I wasn't eating. My response would be that I wasn't eating because I couldn't swallow.
The RSD continued to spread, even with the follow-up infusion treatments (“ketamine boosters”). I received Botox injections in my neck in January 2010. These injections made me worse. By March 2010 it was time for another appointment with Dr. Schwartzman. By the time of the visit I was walking very, very slowly. I could still dress myself and basically take care of myself. But any significant activity would increase my pain and decrease my function. I would have to take many rest breaks with the slightest activity. At this visit Dr. Schwartzman said the time had come to consider the ketamine coma. He said the RSD was all throughout my body. He said that if nothing else was done it was going to continue to get worse. He said the sooner we did something the better chance I would have of reversing the condition. He too seemed concerned that I was having pronounced problems swallowing, and noted that RSD can move into the GI tract. He recommended that I see Dr. Kirkpatrick in Tampa, Florida and to do everything I could to gain weight in the event that I qualified for the coma study.
We made an appointment to see Dr. Kirkpatrick on May 24th and 25th. He gave me a very thorough examination. He took many objective measurements of my pain (which of course meant that I hurt more for a couple of days after the visit). After a two-hour examination, Dr. Kirkpatrick concurred with Dr. Schwartzman that (a) I had RSD, and (b) I qualified for the ketamine coma study. He also said that he agreed with Dr. Schwartzman that acting now was in my best interest: I have a better chance of knocking out the RSD and of having fewer complications from being in a coma. Fewer complications is not only good for me physically, but is also good financially because it means a shorter hospital stay in Monterrey. Dr. Kirkpatrick said that we could try another series of outpatient infusions at the RSD Institute in Tampa. These infusions would be at a higher dose than the ones I received in Philadelphia. The results of these treatments seemed highly variable (and they too are expensive). So, after weighing all the options I decided to move ahead with the coma study.
Making the decision to participate in the coma study was difficult. Dr. Kirkpatrick explained to us all of the risks in vivid detail: death, pneumonia, the super-bug infections. These complications are not likely, but they are real. But the risks of prolonging treatment, having RSD progress further, getting older and possibly having something else happen to me that would preclude me from participating in the study-- all these risks in the end seem much greater to me.
In between appointments in Tampa, my husband and I were driving in the car. He asked me what I would do if fear were not a consideration. Without hesitation I responded, “I would do the coma.” It was the most promising. I was ready to do something with my life, even if the outcome was not what I expected. I want to know for myself, and to tell my children and my devoted husband, that I tried everything to the best of my ability to get better. I also knew that my days on this earth were already numbered by the Lord, and that in the end I had nothing to fear. So I'm pressing ahead. I hope to make a full recovery from RSD. I desperately want to be better. But, if I get better I hope that I never forget the things that I've learned over the past 25 months of myself, the love of God in Christ, and what is most important in life. Regardless of what happens in Monterrey my life will never be the same.
