My Journey Through CRPS/RSD
by: Nancy Renee Cotterman
If my years of experience with having CRPS (hereby referred to a RSD) can help just one other person who is recently diagnosed with RSD or feels like they are alone; then there is some meaning to this journey.
WHAT THE HECK IS CRPS/RSD?
This disease actually has been traced back to the Civil War when it was caused Causalsia. In recent times it has been referred to as RSD (Reflex Sympathetic Dystrophy) and CRPS (Complex Regional Pain Syndrome). Whatever you want to call it, it is a chronic neurological syndrome with such symptoms as:
- Severe burning pain
- Changes in skin and bone
- Excessive sweating
- Selling of the tissue
- Extreme sensitivity to being touched
It is considered a chronic pain condition but involves so much more. Function is often lost in affected areas of the body in addition to excruciating pain that measure on the pain scale higher than that of childbirth and cancer.
The best way that I can describe the process of RSD is that it is an injury to soft tissue, bone or a nerve that doesn’t follow the normal pathway of healing. It is assumed that the sympathetic nervous system assumes an abnormal function after the injury that causes changes within the affected area and often beyond.
Rather than to quote other sites on the technical properties of RSD, diagnosis, I will refer you to two excellent web sites that can give you the technical information:
As long as I can remember, I’ve wanted to be a nurse, a midwife, a wife and a mom. I have accomplished all four. On March 4, 1996 I was driving home from opening a pediatric home care case in Philadelphia just before 7:00 p.m. I had stopped at the Wawa to pick up a gallon of milk and was heading down Bryn Mawr Avenue. As I approached the upcoming traffic light, it was green. I proceeded up a slight incline and in a split second my car was struck in the left front, head on, by another vehicle making a left turn right into the front of my car. I barely had a second to react as my foot hit the brake. My foot absorbed all of the energy from the impact as I hit the brake and as the dash board crumpled downward onto my feet. Immediately I knew that my right foot was broken. What would transpire thereafter was worse that I could have ever imagined in my worst nightmare.
While I was on my way home to my two daughters (then ages 12 and 14), my husband of then almost 18 years and my mother-in-law, a 19 year old teen was on her way to meet a guy on a date. Our paths crossed and our lives as well as our cars collided. She wasn’t paying attention to the on coming traffic and I’m sure to this day has no idea what affect that one momentary lapse has had on my life; on my family’s life. How could she?
I was assisted out of the car by two by-passers as smoke was pouring out of the hood. I told them that I couldn’t walk and they assisted me to the side of the road where I was assisted to sit on the curb on a rather cool March evening. As the Director of Nursing of a small pediatric homecare agency; I was on call after hours. My first thought was that I needed to get myself off of call. I called a co-worker and told her that I was signing off to her for the evening. My next call was to home. Well, no one was answering the call waiting. My older daughter had her own line so I called her line and asked her to get my husband. I told him that 911 had been called and that I would be transported by ambulance to Bryn Mawr Hospital (a hospital that I had worked in for five years before starting in home care).
I was in fact transported to Bryn Mawr Hospital where I received excellent care. I was joined by my husband and by the police who needed to get my statement. An x-ray showed multiple metatarsal (mid-foot) fractures of my right foot. I was given a shot of Demerol, put into a splint and told to contact an orthopedist the next day. I was briefly shown how to use crutches and told not to put any weight onto my right foot at all. Home I went. My car had been towed away. Little did I know that this was the beginning of a long and very difficult journey into the land of RSD. It would be nearly 2 years before I would know exactly what had happened to me that evening.
Once home, I crawled up the stairs to our bedroom, surrounded by my husband, daughters and mother-in-law. I didn’t sleep my foot hurt too much. I had never felt pain like that before. I’ve given birth twice naturally, had a couple of surgeries at that point but nothing had ever felt like this before.
After seeing the orthopedist; I was sent for a CT of the foot and it was determined that there were 8 fractures in my foot but that they were non-displaced (not out of alignment). Eventually I was casted for 8 weeks (6 of which I wasn’t permitted to put any weight on my foot at all), transitioned into an Equalizer Boot and physical therapy. The problem was that my foot wasn’t getting any better. Within the first weeks I began having a burning pain. My foot felt like it was on fire. It was as though someone had spilled lighter fluid on it and set it ablaze. During cast changes my foot was bluish purple (not from bruising) in color and shinny. It remained swollen. The cast felt like a vise around my foot. I mentioned these symptoms to my orthopedist but they didn’t seem to be significant to him. Over the months, instead of the pain getting better, it was getting worse. I couldn’t tolerate wearing a shoe after the cast and removable boot. I couldn’t walk 3 minutes on the treadmill in PT. Even taking a shower hurt. The water beating on my foot was intolerable. I had to take a bath with my foot completely out of the water at all times. People were starting to question me “you broke your foot months ago” then it was “a year ago it’s healed by now, right?”. They were questioning the fact that I was telling them that it still hurt because in their experience a broken bone should have healed by that time and therefore I must be exaggerating or inventing the pain.
My orthopedist decided that the fractures must have caused traumatic arthritis and that if he did surgery to fuse my mid-foot it would solve the issues. I had the surgery March 27, 1997. Once again I was in a cast for 8 weeks without putting weight on my right foot, followed by the Equalizer Boot and yet the burning intensified. It was no longer just in my right foot but was traveling up my right leg. I still wasn’t able to tolerate normal shoes. And as for my orthopedist, he looked at the x-rays after the surgery and told me that my foot was fine. Ok, if my foot is fine then why does it hurt? I became depressed. It seemed that no one believed the amount of pain that I was in. Now I am a stoic person. I had two totally natural childbirths and never took as much as an aspirin prior to my accident so I wasn’t used to complaining about pain and people weren’t used to hearing me talk about it either. It wasn’t that I hadn’t felt pain before. Anyone who has had a child knows what pain is. It was that I never had pain like this pain. The orthopedist basically told me that the pain was in my head and not in my foot. When people asked how I was, it was such a long and convoluted answer to tell them about how much pain I was experiencing and then having to deal with how they took that news, that I told most people that I was “fine” or “hanging in there” except for those who were the closest to me. The people who did know didn’t know what to do or say to me. It is difficult to watch someone that you care about in pain. They didn’t know what to do for me and I didn’t know what to do for myself. I was used to being a very independent person and now I had to have others do things for me that I should be doing for myself and others. After all, I’m the mom. I’m supposed to be taking care of my family and not having to have my family take care of me.
I fell into depression. Was I really crazy and imagining this pain? Well I was fortunate enough to meet a psychiatrist who worked at Bryn Mawr Rehabilitation Hospital working with patients with disabilities. He referred me to the hospital’s Outpatient Chronic Pain Program. Although he personally didn’t know what was wrong with me, he knew that it was a medical problem not a psychological one. He referred me to the director of the program; who is a physiatrist (a doctor of rehabilitation medicine). I started the program in December of 1997. This chronic pain program was wonderful. It involved PT, OT, group therapy with other chronic pain patients, individual psychological therapy and water therapy. Not only did I learn that I was not alone – that other people have pain and aren’t crazy – but someone listened to my symptoms and was working to find out what the problem actually was.
It was in this program that I first heard the letters R.S.D. As I mentioned, I’m a nurse. I’d never heard of RSD. I went onto the Internet and put RSD into the browser. Up came a list of symptoms that described mine perfectly. There was a personal side to my research as well. A specific doctor’s name kept coming up. This name sounded familiar to me but I couldn’t place why. Finally I realized that a dear friend of mine had mentioned his name. This friend and I arrived in the Philadelphia area in the early 1980’s, met through a mothers’ group and gave birth to you youngest daughters three months apart. Our daughters were very close. I called my friend and asked her if this doctor was her husband’s boss that I had heard them talk about. Sure enough he was. My friend’s husband arranged for me to see the associate of this doctor as he wasn’t taking on new RSD patients at that time. I first saw Dr. A. B. in April of 1998. She confirmed my diagnosis just over two years after my accident and set a plan of treatment. She told me that this was a devastating diagnosis, that there was no cure for RSD and that it was debilitating. I was still working at the time. She told me that few of her patients were able to continue to work.
I had changed my work from doing patient visits, supervisory visits and patient care to that of a strictly supervisory office position. I was not able to be on my feet. At that point, I couldn’t even conceive of not working, not taking care of my family; and yet these things were so very difficult to do on a daily basis when you are overwhelmed with pain. I kept pushing and pushing myself to be what I was before this happened. In hind sight I know that we all go through a grieving process with a chronic illness. I was most definitely in the denial phase. Intellectually I now knew that I had RSD but I had not yet grieved for the losses that were occurring. I knew that the pain was real but had no idea at that point how it was impacting my quality of life or how it would impact my future quality of life.
While all of this medical stuff was going on, I was involved in an auto lawsuit. Even though the driver was ticketed, my car was totaled and I had obvious injuries, because of the no fault auto insurance law of the time, it was necessary for me to hire a personal injury attorney to get the other driver’s insurance to pay. For anyone who has been involved in a law suit; you know that it is very stressful. You are constantly trying to prove that your injuries are real; well with RSD that is often a difficult task as there are many health care professionals including doctors who don’t believe that it exists, or don’t know anything at all about it. So on top of just trying to deal with my health issues, caring for my family and working full time as a RN, I was dealing with the stresses of a law suit. For many of us this added stress is fighting workman’s compensation for medical benefits and pay. For most of us, it’s trying to figure out how to balance the stresses of everyday life with the stress of chronic pain, the inability to do the things that you love to do, depression and people judging you because you aren’t the person that they used to know.
Over the past 15 years, I have spoken with many other people with RSD. There seems to be a common theme between us in dealing with spouses, family, friends, work, physicians, etc. It is important for someone with RSD to find a psychologist or psychiatrist who has experience working with people with chronic pain. It is important to reach out even though you don’t feel like it. I had to learn all of these things the hard way. After finally getting a diagnosis, I was relieved to have an answer. You want to be back to your old self and sometimes agree to procedures and treatments out of desperation in order to return to your “old self”. Over time, I have learned not to jump at every new treatment; to research each treatment and get multiple opinions before acting. There are several different treatments out there for people with RSD. Our disease manifests differently in each of us and the treatments work differently for each of us. I’m going to continue by giving you an overview of the treatments that I received from 1998 to present. The opinions expressed are mine and mine alone. They represent the experiences that I had with these treatments and it is not a reflection on how these treatments would affect someone else. It is important to make informed decisions. I can honestly say that I didn’t always make informed decisions even though I am a nurse and I know the importance of informed consent. I have learned over the years to pick and choose which treatments I will try and at this point I know what works for me and what doesn’t. With RSD it is a matter of trial and error to find out what works for each individual. For many people with RSD, the original injury was a minor one such as the stubbing of a toe, dropping something on their foot, someone stomping on their foot, a sprain, an IV stick or a surgery. In my case, the fractures and fusion are maintaining the RSD portion of my pain. Even if I had never developed RSD, chances are that I would have had some long term affects from the fractures such as arthritis. In many cases, the original injury is no longer a source of pain but rather the changes in the messaging of pain has been altered so that the body is tricked into believing that there is still an acute injury. Even in my case, although even without RSD I would have had some residual pain, the messaging centers within my nervous system have created a pain memory and trick my body into sensing pain that is disproportionate.
Here is the rest of my story after my diagnosis of RSD. Obviously I can’t go into every facet of how this diagnosis has changed my life but hopefully this will give you an over view.
McGILL PAIN SCALE
0 = no pain, 1, 2, 3, 4, 5, 6, 7, 8, 9, 10 = the worst pain that you can imagine
When you read about me talking about my pain levels; I am using the McGill Pain Scale above. It is a commonly used tool in pain management.
On Apriln11th, 1998 I had a Bier Block and a Laser Doppler Study. By this point the pain had spread out of my foot and ankle area up the right let into the knee and thigh. A Bier Block involves putting a tourniquet onto the upper leg after starting an IV in the affected foot and infusing medication into the vein with the leg elevated. In my case, they had difficulty finding a vein to start the IV in my foot. Once they did, the worst part was the pressure from the BP cuff that was being used as a tourniquet to keep the medication in the leg. The Bier Block offered some relief for the pain below the knee. A Lumbar Sympathetic Block was recommended since in the time between the Bier Block was scheduled and performed the pain had spread outside of the area that the Bier Block would be able to help.
Following the Bier Block, I began notice that I was getting edema (swelling) in the left foot and ankle not just the right root and ankle; however my pain went from a 7 to a 3 on the McGill Pain Scale, below the knee following the Bier Block.
Many people with RSD experience a spread of their disease into areas that weren’t originally affected. Whether or not it spreads and how it spreads if it does spread varies. Again, there are some medical professionals that don’t believe that RSD spreads. The abundance of evidence proves otherwise. In some people, it mirrors (the affected area on the other side is affected in the spread). In others it moves up the same side of the body as the original injury. Mine started to spread up my right side and then jumped over to my left side.
May 10th 1998 a Lumbar Sympathetic Nerve Block was performed under sedation. An IV was started in my hand and sedation was administered to keep me comfortable during the procedure. Local anesthetic was administered and a needle was placed in my lumbar spine and medication was injected designed to calm the nerve pain. I had wonderful results….for 36 hours. The pain had gone from a 7 to a 2 during those 36 hours. After that point the pain began moving up the right side all the way to my face. Previously it had only been in my right lower extremity. At this point, the pain was so intense that I wasn’t able to function at all. By May 15th the pain was a 10+ and I was admitted to the hospital.
Now showering wasn’t an option at all. The beating down of the water on my extremely sensitive skin was unbearable. I took quick baths (still unable to put my foot into the water at all) or washed up quickly. Wearing clothing became difficult. The touch of the cloth against my skin was torturous. It felt like sandpaper scraping against me. I began to wear only sun dresses or shorts and tank tops year round (in Philly that poses a problem). I couldn’t stand the sheets touching me at night. I was always burning hot with the slightest exertion or freezing cold if I wasn’t moving. There was no moderation; it was always extremes. I had stopped doing the grocery shopping, had difficulty putting a meal on the table for my family, difficulty sleeping, the simplest tasks were difficult. My youngest daughter is blind from birth. In this pre-technology era, she depended on me to help her with her homework by reading her assignments and writing down her answers. I had made the decision when she was very little to mainstream her as the world is a sighted place. In making this decision, I knew that she would need my help to navigate the educational system. I was no longer able to go to back to school night. My communication with her teachers had to be by phone. She would have to do her homework in my bedroom after I got home from work so that I could have my foot elevated. After we finished homework, she would put me to bed. This was not how I had envisioned parenting my daughters. I should be the one tucking them into bed not the other way around! I was fortunate enough to have my mother-in-law living with us. She took over duties such as laundry, driving the girls to activities and other things that I had always been able to do. Without this assistance, I don’t know how I would have survived. I felt angry that I had to depend on others for these things and at the same time was grateful that my girls and husband were being taken care of when I couldn’t
May 15th – 23rd, I was hospitalized, given a continuous epidural infusion and a stellar block to treat the pain in my face, neck and arm.
The stellar block is administered in a similar fashion as the previous blocks but in a different location. A Bier Block refers to a block of the lower extremity. A Lumbar Block refers to a block given in the lumbar section of the back. A stellar block is given into a series of nerves in the neck reason. I was discharged on new medications consisting of Prozac, Mexilitine, Zanaflex, Vistoril, MSIR (morphine) and Oxycontin. May 25th 1998, I was rushed to the ER of a local hospital with a fever of 104.2 and diagnosed with Ecoli UTI and sepsis. During the hospitalization I had a Foley Urinary Catheter in place since the epidural’s purpose was to keep me numb from the waist down. The UTI/Sepsis was a complication of the treatment. During this hospitalization, while my husband was out of town on business and my children were at home, my mother in law had a heart attack. A neighbor spent the night with my children as my mother in law was rushed to the hospital. She recovered and lived with us until her death 10 years later.
June 19th, 1998; After medication adjustments earlier in the month the pain was totally out of control and Dr. A.L. wanted to admit me for IV Lidocaine but there were no beds available. July 25 – July 5th I was hospitalized for IV Lidocaine with cardiac monitoring. I got good relief for a few weeks. In September, I was rehospitalized for IV Lidocaine. This time they couldn’t get an IV established. After sticking me for 24 hours (nurses on each shift as well as different doctors), I was taken to the OR to have a Hickman catheter placed (a central line that is always accessed and lasts about 6 months; I could not convince the surgeon in the hospital to put in a medi port). By the time we started the Lidocaine, the pain was totally out of hand and I didn’t respond to the Lidocaine like I had previously. I was then given intercostal (between the ribs into the thoracic region) blocks and an epidural with moderate success. I was hospitalized for a total of 2 weeks during this hospitalization. After the 6 month period that the Hickman Catheter was usable, I had my own surgeon replace it with a port.
In November of 1998, I was hospitalized for pain management again without any success. At this time a neurosurgical consultation was made to see if I would be a candidate for an Interthecal Medication Pump. This is a pump that is placed in the abdomen and delivers a continuous medication into the Interthecal space of the spine. It is filled externally via a needle into the reservoir that is in the abdomen. In December, I was hospitalized for 7 days for a trial of the pump using two different medications: morphine and bibuvicaine.
In February of 1999, I did in fact get the Medtronic Medication Pump. The surgery portion of it went fine. I had a home care nurse who came out and flushed my port when she refilled my pump. By this time Dr. A.L. had left the practice and I was seeing another physician in the practice (my friend’s husband’s boss Dr. S). Over time it became necessary to increase the dosages of the medications in the pump much in the same way that the oral medications had in the past. I was sleepy all of the time and definitely felt the systemic effects of the medications. At first the medications helped a great deal but over time my pain would get worse. In hind sight, the narcotics were helpful for the “bone pain” that I had residually but not as effective on the “nerve pain – the RSD”.
In September of 2001, I was approached by my friend’s husband called to tell me about an experimental treatment that his boss (Dr. S) was involved in in Germany. The treatment involved the use of Ketamine to induce a Ketamine induced coma. Ketamine is an anethesetic. It is used in veterinary medicine and before better medications were available, it was used in general anesthesia. At that time when I looked up Ketamine on the Internet, the only mention of it was Special K (abuse of Ketamine) and it’s use in veterinarian medicine. A lot has changed in 10 years! The thought process behind the Ketamine is as follows: The Ketamine is thought to reboot the nervous system much in the way that we reboot our computer when there are problems. It is thought that by rebooting the system, they can erase the memory that the nerves are carrying of the abnormal pain. When this was suggested to me 10 years ago, four other patients of this doctor had received the treatment. At that time, they hoped that this was a cure for RSD. It had been used in Germany for phantom pain (pain felt by someone after they’ve had a limb amputated where they feel that the body remembers the amputated limb). They felt that the memory pain felt by amputation patients was similar to that of the memory pain felt by RSD sufferers.
Well, what a decision to make. Here is what went into the decision making process. First of all, insurance would not cover this treatment. I would need to pay for the ICU hospitalization, transportation to and from Germany for myself and two support people, hotel expenses, food, and other travel related expenses. Then there was the fact that only 4 other people had done this from my area. It involved being put into a medically induced coma and the risks of immobilization, intubation (artificial airway), side effects of the Ketamine (there’s a reason why people abuse it; it was described to me as being similar to LSD), and of course the fact that I was a mom and had responsibilities.
I had stopped working ironically on 9/11/01 because I could not perform my duties due to my disabilities cause by chronic pain and medication. I had tried working less hours, stopped doing patient care and had tried every thing to continue to be able to work but my health was suffering, my work definitely suffered and my family was suffering. It was a very difficult decision that in hindsight, I should have made years earlier. I managed to work for 5 ½ years after my accident but only the first year was I truly doing the type of work that I loved and still miss.
My court case had settled in my favor after my diagnosis of RSD. My eldest daughter was away in college. My youngest daughter (who is blind) was in high school. I had to look at the potential benefits of the treatment, along with the potential risks involved. I had pressure from my family to have the treatment as they felt that I had to take advantage of the chance to be cured. This was the first treatment that had been offered to me that they felt was a potential cure. There wasn’t enough evidence either way, but it was a chance. If I decided to participate, it would be part of an ongoing study into the effectiveness of Ketamine on RSD. I would be in on the ground floor of this study. It wasn’t an easy decision. The decision that I made was the right one for my situation and my family. It may not be the right decision for someone else with RSD. I decided that I would go ahead and have the treatment in German.
My father was born in Germany and lived there with his parents and twin brother for the first 11 years of his life. My uncle and my mother were prepared to travel to Germany with me for the treatment so that my husband and mother in law could be at home with my daughter. My father was sick with ALS at the time and offered to be placed in a nursing home while my mom and I traveled so that she wouldn’t have to worry about his care. All of these decisions transpired in a short period of time as I had been offered this opportunity and there was no guarantee that this program would continue. I was terrified. What if something happened to me? What if something happened to my father while we were in Germany? With the support of my doctor, my family and the desire to have a chance at being my old self, I decided to take advantage of the opportunity and go to Germany. Plans had to be made quickly, pre-treatment tests completed and arrangements made at home for the time that I was away and my recovery afterwards.
On October 28th, 2001 I was put into a Ketamine induced coma. We arrived two days before and met with the German doctors who were running the program. We met with them for dinner so that they could get to know us and we could get to know them before we began the treatment. I say we. My American doctor sent two patients at a time to Germany for the treatment. He accompanied the first two pairs. The other patient (who herself was a physician) was accompanied by her father (who is a physician) and mother. I agreed to have a family friend who was a physician fly back to the US with me after the treatment in case some medical care was required during the trip home. This was a precaution that I don’t believe was continued after our visit. The protocol for the coma treatment was evolving. The other patient (who I will refer to as “my roommate” since we share a hospital room) and I were the first ones to receive medications such as Versed and Clonopin along with the Ketamine in hopes that these medications would counteract any potential hallucinations that the Ketamine might provoke. It was fear of hallucinations after the treatment that lead the doctors to require each of us to have a physician accompany us home. So this is the background information leading up to the decision to go to a foreign country to get an experimental treatment for a horrific disease. Here’s what the experience was like:
There were two primary physicians involved in our care as well as ancillary physicians and staff. We went through some tests the evening prior to our treatment so that they would have a base line for us. On October 28th, an IV was started peripherally and we were given a sedative. That’s all I remember until I woke up on November 7th . I was discharged on November 9th and retuned home on November 11th. Here is what I’ve been told happened while we were asleep.
After we were sedated, a central line was started in our jugular veins (in the neck) and what is called an ARTline (arterial line) was started in order to monitor our blood pressure, blood gas levels, and other important medical information. I have had severe reflux and gastroperisus (slowing of the motility of the digestive system) as a result of my RSD therefore, the doctors thought that it would be prudent to intubate me prior to putting me into the coma. My roommate, who did not have a diagnosis of reflux and thus she was not intubated at first. A foley cathether was placed to drain urine and monitors were placed on us. The Ketamine, Versed and Clonopin were infused into our central line. Physical therapists moved our arms and legs every day and we were monitored in the ICU during our “coma” time.
The evening of November 8th, my roommate woke up. I woke up about 10 hours later. There was a period of time after the Ketamine drip was decreased and stopped when I was waking up I had some strange dreams. I wouldn’t classify them as hallucinations or night terrors. When I went to sleep, my daughters were on my mind so that is what I dreamed about. I wasn’t frightened when I went to sleep. My roommate did have some hallucinations when she was waking up and after she woke up.
When I woke up I was in NO PAIN what so ever. It was amazing. I was weak and needed assistance just to move but I wasn’t in any pain. It was the first time since that fateful date in March of 1996 that I didn’t feel pain.
Communication with the nursing staff was difficult for us. We didn’t speak German and their English wasn’t that great either. We used jesters and such to get our needs across. I recommended to others that followed us that they bring a German/English, English/German dictionary with them. I also recommended buying bottled water before going into the coma. In Europe, they drink soda water. I’m not a fan. In order to get the IV out, we had to drink a lot of water. I choked down the soda water since I was as my husband put it “in discharge mode”. The program in Germany is no longer available so I won’t go into my recommendations on how to survive coma therapy in Germany.
The trip home was a difficult one. I was weak and exhausted. Traveling from Europe to the US is a daunting task when you are feeling great. We hired a car to drive us from the hotel to the Frankfort Airport. I used a wheel chair in the airport. It was a tense time to travel as it was less than two months after the 9/11 attacks. Recovery took several weeks once we were home.
A life long friendship developed with my roommate during our Ketamine experience. We shared a love for the medical profession and an experience that few have experienced. After our return to the states and recovery, we depended on each other for support as we went through our post-Ketamine treatment. Although we are very different people (she is 14 years younger than I am and single), our common experience bonded us for life.
Since this was early on in the Ketamine program, there wasn’t any follow up plan. We were off all of our RSD medications. The booster treatments weren’t available at that time. By the end of December of 2001, the burning pain returned in my foot. I immediately called my doctor and my medications were restarted. My Germany roommate was a physician. She had contacts at another area hospital that were willing to look at research out of Australia for “booster” infusions of Ketamine and she arranged for the two of us to receive them at the other hospital under the guidance of our doctor. They put is in the OR pre-op unit. This was a level one trauma hospital with a busy OR. Since we were both in the medical profession, they figured that the environment wouldn’t be upsetting for us and it would allow the anesthesiologists administering the Ketamine to keep an eye on us. My room mate had a port put in as repeated IV sticks are not good for someone with RSD (I had one already). We settled into a routine of infusions. It was trial and error as to when and how often we got them. It actually is an individual thing as to how often they are needed, but at that time we were in the beginning stages of developing a protocol.
On a more personal note, two weeks after our return from Germany, my father passed away. I still had my medication pump and they had refilled it in Germany. Thanksgiving Day it started alarming. The home nursing service was no longer doing the refills and arrangements were in the works to have a physician take over the weaning process that had begun in Germany. Due to the time constraints involved, we were not able to wean the pump medications completely before I left for Germany; however the process began while I was under the Ketamine. Well on Thanksgiving Weekend, it isn’t easy to make those kinds of arrangements. We had been told that I wouldn’t need a refill until mid-December. The Tuesday after Thanksgiving the pump was refilled. They determined that the reservoir was empty at that time but refilled in anyway. That evening I became very sick. I was vomiting intractably and had massive diarrhea. Wednesday I was supposed to go and help my mom with my father’s care (which I had been doing since my return from Germany) but I sent my husband in my place since I was so sick. My father died that day without me being there. I never got to say good-bye. I ended up in the hospital with dehydration secondary either to withdraw from the morphine that had been in the pump because it had run out or due to an overdose when it was refilled because after it ran out, refilling it over dosed me. We will never know because the symptoms are similar plus I was in a local community hospital and no one made the connection between the pump refill and the illness. My RSD doctor was extremely worried that being hospitalized and my father’s death would set me back to square one with my RSD. Although it was a horrible time, I did remain pain free for another month. Since stress directly relates to the pain that people with RSD have, it is truly amazing that these events didn’t set me back to square one.
Before going to Germany, I couldn’t tolerate the touch of clothing, sheets, etc on my skin. I lived in sun dresses and sandals. I couldn’t tolerate the shower’s water beating on my skin. After I returned home, I was able to wear clothing for the first time in 5 years. I showered again. Even when the pain started to return, the allodia (the intolerance of anything touching the skin) was much better after the Ketamine coma treatment. That fact in and of itself made the trip to Germany worth it; even if it wasn’t a “cure” for me. To be able to look like a normal person, wear clothing without excruciating pain from the touch of the cloth was a huge improvement for me.
So beginning February 7, 2002 my roommate and I began the booster infusions three times a week for several weeks. With each series of treatment there was a marked improvement in the burning pain. Again because I also had an orthopedic injury, I still had pain in my foot but it was a manageable pain. The typical RSD burning pain was responding to the continued Ketamine treatments.
Over the course of two years, I had many series of out patient boosters and a couple of in patient infusions in the ICU. The in patient infusions were not the coma treatment. With the inpatient therapy IV Ketamine is infused starting at a very low dosage and increased in small increments until you feel “drunk” with a maximum of 40 mg/hr dosage. It is administered for 4 – 6 days depending on the protocol. You are encouraged to sleep rest and relax in order to maximize the effects of the medication. There are no phone calls and very limited visitation. This in patient treatment is normally followed up with out patient boosters to maintain the affects.
In the interim, other doctors here in the US began to offer Ketamine as a treatment and began doing studies on the use of Ketamine in RSD. The study of Ketamine Coma Therapy continued. Because inpatient Ketamine was not covered by insurance at the time and the fact that outpatient boosters weren’t readily available either, by 2004 the burning pain was back full force. I could better tolerate my clothing but any other stimulus to the skin was unbearable. Moving around was unbearable. Life was unbearable.
In January of 2004, I returned to Germany for a second Ketamine Coma Treatment. By this time, I was patient #15 in the study, there was a booster program in place, we knew that it was a good treatment for me and hoped that with a new follow up plan, I would have a more lasting result. On a financial note; ICU care in Europe is cheaper than in the US. It actually cost me less to travel to Germany for the coma treatment than it would have at that time to do an inpatient awake treatment. Because I had had so much Ketamine, we all felt that I needed the higher dosage of Ketamine to knock the pain down so that we could manage it with the outpatient infusions. By this time both of my girls were in college. My husband accompanied me to Germany. The requirement to bring a physician was no longer and I knew and trusted the German doctors. I did things a bit differently this time. I took an English/German, German/English dictionary with me. My husband and I went to the local store and bought “flat” bottled water. Once again, a second American was treated at the same time that I was. This time my counterpart was a young man who was the same age as my children. It was so helpful for my husband to have someone to go through the experience with. They shared cabs to and from the hospital. They shared meals and compared notes on our progress. It is so important for caregivers and family members of people with RSD to have a support system. It is just as important for them to have a support system as it is for the person with RSD to have a support system. Along with the increased use of the Internet and social media have come many on line support groups, information sites and chat rooms for RSD patients and their families to get that support. There are also support groups in many locations sponsored by RSDSA and RSDHope whose websites are sited above.
When I was in Germany, the doctors spent a good bit of time restudying my original injury. We knew that it was the pain from the orthopedic injury that was maintaining the RSD pain. They wanted to be sure that everything had been done to stabilize my foot. Their orthopedists, surgeons and pain management doctors all agreed that my foot should be left alone. They felt that I should minimize the use of my foot as much as possible and be treated for the bone pain; which is treated differently from nerve pain. My follow up care took all of this into account. I was put on a protocol of twice a week Ketamine outpatient boosters for 4 weeks. Additionally, I began getting trigger point injections and blocks every three months.
I made another major life change. We left the Philly area and moved to FL. When it was less than 50 degrees out, my pain intensified. It was both the bone and nerve pain that intensified. We were at a point in our lives when we wanted to downsize. My husband’s job requires that he travel during the week so as long as he is close to a major airport, has a phone, fax and computer, where we live isn’t essential to his job. We felt that the warmer climate would allow me to do more, to be less isolated in the house for weeks at a time and so when we sold our house to downsize, we moved to FL. It has proven to e true that I’m able to get out more in this climate; however the summer afternoon storms have proved to be challenging. Now when you look at the fact that in PA it can be cool for several months of the year non-stop compared to three months of period afternoon storms; there’s no contest. The cold weather is far worse than the afternoon storms during the summer months. I bad part of the move has been the fact that my family and friends are so far away.
Another therapy that was recommended to me by my doctor here in FL was a spinal cord stimulator. The thought was that if we could use the stimulator to help with the foot pain. In November of 2009, I had a trial of a neurostimulator. The electrical impulse that the stimulator produces is supposed to trick the body much like when you have a bug bite that itches and you slap the bite, the itch goes away. Well the trial went well. The big mistake that I made was not to talk to others who had RSD who had the stimulator because I later learned (after having the permanent one placed, many complications from the surgery, etc.) that for many people with RSD in which the stimulator works at first; over time that stimulation becomes an aggrieving sensation for the RSD. So I no longer use it. I spoke to other patients of my FL doctor who had a stimulator. Unfortunately none of them had RSD. I have since learned that many doctors who hear that you have RSD automatically recommend a neurostimulator (which is exactly what happened on my first visit with my FL doctor). Of all of my treatments, if I could go back in time and change my decision this is the one that I would change. I had a post op infection which caused the incision to open up. The unit had to be removed and I spent months having wound therapy, IV antibiotics at home and skilled nursing care at home. When the wound had healed, I had a new unit placed (it had to be placed in a slightly different location due to scarring caused by the infection). To have gone through all of that and have had less than a year of relief from it is frustrating.
The Ketamine treatments over the past 10 years has improved my quality of life more than any other treatment to date. With the increased numbers of doctors offering it and the increasing knowledge on how to treat with Ketamine, the potential for help for people with RSD is good. Things like this take time. The FDA still has not approved Ketamine Therapy here in the US. There are still a limited number of doctors/hospitals offering the outpatient and inpatient awake therapies and a large number of patients who are interested in the treatment. Additionally there are battles with Workman’s Comp and Medical Insurance Companies to cover the treatment. They deny payment because they consider it experimental or investigational. Much like two decades ago insurance companies wouldn’t cover organ transplantations for the same reasons. I feel strongly that we need to continue to support doctors who are offering the service and pressure the insurance companies to cover the costs.
As with every treatment, there are doctors who are just in it for the money (since if they don’t accept insurance they can set the price) and there are doctors who will offer the service for the good of their patients and charge what they need to cover their costs. So how do you know who is who? My only suggestion would be to talk to other people who are receiving the treatment. Make sure that the doctor that you choose is a good match for you. The doctor that I trust and get along well with may not be the right doctor for you. There are web sites that patients can rate doctors’ services on. They look waiting times, bed side manner and other care related issues. Make sure that you investigate every avenue available to you before you choose a doctor or treatment for your RSD. Talk to as many people as you can prior to making a decision.
As for me, I plot along each day. I have good days and bad ones just like everyone else. I have learned how to pace myself so that I don’t cause as many flares. I have also learned to prioritize. For instance, if there is something that I really want to do and I know that it will cause me to have an increase in pain afterwards; I plan on a day of rest before and after the event. We have to do the things that we love and get out with people. It is important to our emotional health. The difficult thing is to juggle this along with the repercussions that being active can cause with your RSD. I do choose to use a wheelchair when I am out and about because it puts less stress on my foot and allows me to do more. When I am at home, I do walk, ride an exercise bike (without resistance) and do home physical therapy to be sure that my balance remains good and that I don’t lose range of motion or strength. Most of the time, after 15 ½ years, I can strike a balance. Do I still miss the “old” me? Yes of course. But I have come to accept and enjoy the life that I do have and the things/people who ARE in my life.
Here are some articles of interest including the Ketamine Study that I was a participant in. (In the study, I am listed as patient #5/6 or #14/15 depending on the publication)
This blogg be my ongoing daily journey through RSD….