Eric: 40 Years Living with CRPS — Choosing Life Over Limb (Part 3)
Content Note: This story discusses amputation and medical trauma. Please take care while reading.
Eric was diagnosed with Complex Regional Pain Syndrome in 1987 at Massachusetts General Hospital. Over the course of nearly four decades, he endured countless procedures, setbacks, and unimaginable pain. This is his story of survival, strength, and ultimately, choosing life.
Chapter 1 (Part 3): Amputation + Prosthetic Life
my Amputation + Prosthetic Life
The most difficult surgery that I went through in my life was on August 25th and 27th, 2008. I had to have a two-stage amputation. I had to have this surgery because I battled with infections in my left foot and leg for over a year and a half. The infections first started on February 14, 2007(Happy Valentine’s Day!). I was admitted to the hospital monthly to a month and a half to help fight these infections with I.V. Antibiotics which did not do too much for the infections and made me feel like crap. In June of 2008, I was in the hospital again for a week to treat the infections. After being in the hospital for a week, my doctors came into my hospital room to discuss with me that the antibiotics were not working to help control the infections. They discussed with me my options of what to do next. They said I could return monthly for the next five to six months and do more I.V. Antibiotic treatment until the infection kills you or we can do an amputation. Boy, that was a big-time wake-up call to hear the word's AMPUTATION! Wow! I
said to my primary care physician (Doctor P.G. from the MGH) I have to think about that for a minute. He recommended that I should speak with a vascular surgeon from MGH who does amputations.
I told Doctor P.G., that I would agree to speak with this surgeon Doctor M.C., also from the MGH in Boston. He was such a great guy and a great surgeon.
He spent over an hour with me going over my options and discussing the pros and cons of doing this procedure. I had many questions for him regarding my CRPS. I asked the typical questions like do you know what CRPS is? How many patients have you seen with the disease? Have you performed an amputation on CRPS patients before and what were the results? Well, he was honest with me and told me he knew about CRPS, but he never did an amputation on a patient with CRPS. I told him my hopes and fears of doing this surgery. He was open to learning more about CRPS and amputations. This impressed me to know he was willing to learn more about what I was dealing with.
After meeting with Doctor M.C., and going home, I took the month to beat myself up (mentally) by deciding to do the surgery to amputate my left leg above the knee. I spoke with all my family, friends, and other relatives about what I was planning on having done. I also spoke with a wonderful Psychologist Doctor B (as I call her). She helped me so much in dealing with the fact of having an amputation. She put it in the best perspective to me. She had asked me if my foot and leg were my friend or enemy in this time of my life? My answer to her was that it was my enemy; after that conversation, I made my decision to do the surgery. Thank you, Doctor B!
One week before my surgery, I met with Doctor M.C., to discuss what we were going to do for the surgery. At this point and time the infections were at their worst. I was only sleeping between one to two hours a night due to the pain of the CRPS and the infections. Once, Doctor M.C., saw how bad the infections got, he said that he had to rethink what route he was going to take for my surgery. He said since the infections got worse, he had to do a two-stage amputation. As he explained to me on the first day, he would amputate my foot at the ankle to let the rest of the infection drain out of my leg for a day. He then asked me if I wanted to stay awake for this first surgery which would be a guillotine cut of the foot at the ankle. He said it would only take 10 minutes for the procedure. I asked him if he was smoking crack in his pipe? Lol! I told him a big NO! I wanted to be knocked the hell out for the surgery. Well, I must say that the first part of my amputation surgery went well. To be honest, I felt great not having that infected and painful (for over 20 plus years) foot on my body anymore. I was like a different person laughing and telling jokes to the nurses and doctors. So, on the third day of being in the hospital, I had the second stage of the amputation done. The surgery went well, but I felt more pain than I had after the first surgery. I knew that it was not going to be an easy ride without having some type of pain.
I was in the hospital for six days. I remember the first time I tried to get out of bed without having my leg. It felt strange, but I was used to not using my left leg to walk for the past 20-plus years, so it was no big deal getting used to being an amputee. I was released from the hospital and went
home to finally get some well-deserved rest. As one knows, no one sleeps while they are in the hospital. This fact is because the nurses need to check your blood pressure, draw blood or give you meds rather than let you sleep between the hours of 1 A.M. and 6 A.M. I was also looking forward to getting some good home-cooked food from my mom. You know how hospital food can be.
Well, my first night home sleeping in my bed did not go as well as I planned. The moment I got into my bed, I started to get really bad muscle spasms in my stump (which was nicknamed Stumpy by my dear friend Tracey P.).
These spasms lasted six to seven hours. I could not move an inch in my bed without having severe pain in my stump from the spasms. I called my surgeon's office, and I spoke with a doctor who was covering for him over the weekend. I told him what was going on and asked him to phone in a prescription for a muscle relaxant. He said that I have to drive back to the hospital in Boston to be checked out. I said to him, "Are you crazy?" I knew what was going on, and I needed something for the spasms. So, I hung up the phone since I was not getting anywhere with this idiot doctor. I asked my mom to call 911 to take me to the local ER. They came right away and took me to the local hospital. After being there for six hours, they sent me home with a prescription for a muscle relaxant. It did help with the spasms briefly, so I was able to get some sleep.
The next night, the same thing happened to me again. The spasms started back up again. After a few hours of dealing with this again, I asked my wonderful mother to call 911 again to take me back to the MGH in Boston again to see my surgeon to learn what was going on with all these spasms. Well, the reason for all these spasms was due to another infection that I developed above my incision. After finding this out, I was back on I.V. Antibiotics for another six days. Thank God that the Antibiotics helped with the infection this time. It was well worth staying in the hospital again for another six days.
Finally, I was home and resting in my bed again. Then the fun started with adjusting to my new life of being an amputee with CRPS. For weeks, my days were filled with visiting nurses coming in to change the dressings on my stump (stumpy) and checking for any new infections. Thank God I never had another bad infection again. Knock on wood! After a few weeks of being home, I started in-home physical therapy (PT). It was fun learning new ways to do things as an amputee. I was ahead of the game because I lived the past 20-plus years of not using my left leg due to the pain, so I was used to using crutches and a wheelchair.
After about a month of in-home PT I started out-patient PT at a local place not too far from my home. This is where I started to build up my strength again to get ready to be fitted for my first prosthetic. In October of 2008 I started the process of being fitted for my first prosthetic socket and microprocessor knee (C-Leg) . I gave my new leg a nickname. I call him Lefty. I did not realize how much work goes into making a prosthetic socket. You have to go through a casting process to have a mold of your stump so they can start creating your socket. It is a very amazing process to witness. I was very fortunate to be referred to Nextstep Bionics and Prosthetics in Warwick, RI
(I won’t name names; you know who you are Lol!). All of the great people at Nextstep have given me my life back with my new leg.
On November 12, 2008, I took my first steps walking after 20-plus years of only walking on one leg. It was a scary feeling taking my first steps on my new prosthetic leg. I felt like Forest Gump! Run Forest Run! I had no clue what I was doing, but I did it. I think it was my dad watching over me that day.
At that moment, I truly wished my dad could have been there to witness me walking again. I can still picture my mom's expression when I took my first steps; it was a moment of pure joy. Seeing her happiness filled me with a sense of pride and warmth, making the experience even more special.
Most people do not know that being an amputee, we are constantly going through changes with the anatomy of our stumps. I was told in the first year of being an amputee that I may go through at least three to six different sockets. Well, I was lucky I only went through three sockets in my first year. In total, I have had eleven sockets and five knees. As I tell people, it's not easy being an amputee. It can be very painful at times, and it can be very challenging and frustrating at times too. It’s a lot of work walking on a prosthetic leg for many people, including myself.
The fun part of having my sockets made is that they can take any T-shirt with a design on it and laminate it to the socket. It is a cool process to watch. I have had many cool designs on my sockets over the years. Most people who know me, know that I am a big Todd Rundgren Fan. He is my favorite music artist. I have been following his music since my older brother Michael turned me on to Todd’s music in the 1970s. I have had many of Todd’s concert T-shirt images on my sockets over the years. Todd has been so kind as to autograph a few of my sockets when I have met him at his concerts.
Well, I must tell you that having CRPS and being an amputee can be very difficult to deal with at times. As I tell patients who have called or emailed me; that they are thinking about having their arm or leg amputated. I tell them that it is a long hard process to think about and a difficult decision to make.
First off, there are many factors that you have to take into consideration before you get to the point of amputation. You must exhaust all your options (other treatments) before doing an amputation. Typically having an amputation will not cure your CRPS. Sometimes, it can cause more pain and spread of the disease.
Sometimes, people think that if you cut the affected CRPS limb off you are going to be pain-free. This is not the case for most people who go through this procedure. There is an article written by a group of doctors from the Netherlands who have reported that only 1% of the CRPS population can wear a prosthetic limb after amputation. I am glad that I am a part of the 1% of a group that can wear it.
In my case, I had an above-knee amputation (way above, my left knee). I had a long discussion with my surgeon Doctor M.C. about how far above the knee we were going to amputate? I was grateful that Doctor M.C. trusted me in my decision of where we should amputate. I went a few inches above the line of discoloration from the CRPS, which was past my mid-thigh. I have been told by my doctors and prosthetist that I made the right decision on the level that I had chosen.
The most difficult part of dealing with being an amputee is having phantom limb pain (PLP). Boy, I found out the hard way. To be honest, PLP is more painful than CRPS pain. I have had to deal with PLP since my surgery, and I still have it after 17 years. The pain that I feel when the phantom pain hits is a feeling of being repeatedly stabbed in my stump. It is a painful feeling that I would not wish on anyone. People say to me that your leg is gone, how come you still have a feeling that your foot and leg are still there? When they do an amputation, they do not remove the nerves that were connected from your foot, ankle, and leg to your brain. They do not remove the nerves (it is not like a wiring harness in a car that you can remove. Lol!). The nerves that were connected to my foot and leg are still in my residual limb (my stump). These nerves are still connected to my brain, which is the reason why I can still feel my old limb. To this day I can still feel the screw that was in my great toe, and I still feel the infections that I had on my foot and toes. This is a very strange feeling, to say the least!
There are many nights when the phantom pain comes and it can stay with me for days. The longest that I went without sleep due to the PLP was 38-hours. I can always tell when the “Phantom” (as I call him) is coming to visit me. The change of weather can cause the “Phantom” to rear its ugly head at times.
My honest recommendation to any CRPS patient who is thinking about having an amputation is to think long and hard about doing it. As in my case, I had no choice about doing this surgery.
The infections that were caused by my CRPS were affecting my health and my life. My decision came down to life or limb, so I picked life over my limb.
There has only been one time in the past 17 years that I said, I regretted having the amputation. It was on my first night home after being released from the hospital. This was when I had brutal spasms in my stump for over six to seven hours. Since that night, I have not regretted my decision at all. Once we got everything under control, I started looking forward to walking again and starting my life over.
If you are at that point in your life and at the stage of having CRPS that you have to amputate, please take the time to talk with your doctors, family, friends, and a good Psychologist before you make that final decision. Also, do some soul searching too. It is a big procedure to go through and a long road ahead of you living as an amputee on top of living with CRPS. Please talk with someone who has been through this surgery. It will help you in many ways.
I was lucky to speak with someone with CRPS that went through having an amputation of their left leg. This person helped me in so many ways. Thank you, Lou M., for being such a great friend and for being there for me during my surgery.