Eric: 40 Years Living with CRPS — Choosing Life Over Limb (Part 2)
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 2): Treatments + Surgeries
Treatments + Surgeries
The road to dealing with CRPS leads you to many forms of treatments and surgeries (in some cases). In my case, I started to develop a deformity in my left foot, ankle, and toes. This deformity baffled many doctors during my quest to get a proper diagnosis. I remember one Neurologist telling me that I had dystonia and not RSD. Little did this doctor know that some cases of RSD
CRPS can develop a dystonic posture or deformity. This issue was my case. I guess that I am lucky to have a deformity (in some ways). It was a visual thing that someone could look at it and say that must be painful. Most CRPS patients do not develop any type of deformity, which should not discount their pain.
In the beginning, after my diagnosis, I had many sympathetic nerve blocks, bier blocks (which are one of the most painful types of block anyone could ever go through). You count every millisecond; it is unbearable pain. I did two of these to prove a point that they do not work. I must have been crazy at that time, Lol!
Going into my third year of suffering from CRPS, the deformity in my left foot was getting worse. It got so bad that the joints in my great toe (big toe) froze. On December 14, 1988, I had my first surgery. I had a fusion of the left great toe. This surgery was done at the MGH by my Orthopedic, Doctor J.J.. Two months after the surgery my CRPS started to spread up my left leg above my knee. The pain got so bad I was no longer able to put pressure or weight on my left leg (I lost the use of my leg). So, for the next 20 plus years, I went around on crutches and used a wheelchair for long-distance.
Since then, after my first foot surgery, I went for more nerve blocks to help control the pain. These nerve blocks did not help too much, until I met Doctor Hooshang Hooshmand of Vero Beach, Florida. His nerve blocks gave me the best relief. Read more about Doctor Hooshmand further on in this story.
Over the past 40 years of dealing with CRPS, I have had hundreds of epidural nerve blocks, trigger point injections, SI joint injections and so on… Sometimes, I had some relief from the blocks and sometimes not. Most patients have been through the same thing over time. It is a part of dealing with this disease and dealing with doctors who do not understand the disease or know how to
treat it. Sometimes, these treatments work, and unfortunately there are times when nothing helps with the pain.
The other part of my injury from the car accident was my back. I herniated a few discs at the L 5/S-1 level of my lower spine. It took me three years after my accident to find a doctor who knew about back issues and CRPS. I was fortunate to meet an Orthopedic spine specialist Doctor P.B. from the Dartmouth Hitchcock Medical Center in Lebanon NH.
I found Doctor P.B. through an article he wrote on RSD associated with low lumbar disc herniation. He performed two back surgeries on me. On July 10, 1991, I had my first of three back surgeries. The first back surgery helped my back for a short time.
I had my second back surgery on October 27, 2004, which was the same day the Boston Red Sox won their first World Series in 86-years. I will never forget that day! Once again, this second back surgery did not help for too long either.
Now jumping to October 23rd and 24th, 2017, I had my third and final back surgery done by Doctor P.G. from Boston. This time, I had to have spinal fusion surgery at the L-4, L-5, S-1 levels. This surgery was brutal. They cut me in my abdomen, and my lower back to install the cages, rods, and screws that are now a part of my spine.
This surgery helped with some of my back pain, but it has left me with some other issues, including SI joint pain. After having this type of surgery, I said to myself, no more back surgery for this kid!
To understand how CRPS can change a person’s life, one must see the physical changes that my foot and leg went through over 23-years. The deformities which I developed affected my toes,foot, and ankle. These deformities caused me many issues to properly walk on my foot and leg. The skin changes that took place over the years, and the infections I had in my foot and toes for over a year, and a half caused more additional pain on top of the constant burning pain of the CRPS which was unbearable.