One, two, three, four – into the closet they went. Four prosthetic legs by four different prosthetists. Each one telling me they could make me a pain-free, above-knee prosthesis. Each leg worn a few months and then placed in the closet. The frustration and pain just wasn't worth my desire to look whole. Having become so functional on crutches, each time I put the leg in the closet the crutches were a welcome relief from the pain of walking on a prosthesis.
Unfortunately, all four prosthetists attempted to imply that I wasn't motivated to wear a prosthesis. After spending many hours with each prosthetist, trying to get a fit that wasn't painful, each time I finally reached a point of frustration, and into the closet the leg would go. Not once in 11 years did any of the prosthetists suggest that I see a physician. Placing my trust in the prosthetists to know what was best at that time, it didn't occur to me to schedule an appointment with my surgeon.
To add insult to injury, as the facilitator of an amputee peer support program, I was constantly reminded that I was the only one in the group not wearing a prosthesis. Again, the implication seemed to be that I wasn't trying hard enough.
A New Direction
Due to increasing problems with my hands from extensive crutch use and my need to conquer the prosthetic challenge presented to me, I decided, before going any further, to meet with an orthopedic surgeon. Belonging to a health maintenance organization (HMO) in Northern California, I was referred to a new staff member who specialized in working with amputees. The results of my examination indicated that reconstruction surgery was needed to eliminate the pain and to reshape my residual limb to make it more conducive for wearing a prosthesis.
According to my doctor, pain in lowerextremity amputees may originate from a number of areas and structures including bone, muscle, nerve, blood vessels and skin. These painful symptoms can often lead to significant disability, difficulty with daily activities and the decreased ability to wear a prosthesis. He recommended that I should consider the Ertl procedure, which attempts to recreate a durable, pain-free and potentially weight-bearing limb within the prosthesis in both above-knee (transfemoral) and below-knee (transtibial) amputations. My HMO agreed to pay for this surgery.
Waking up after the surgery to that old, familiar, intensely burning pain, I realized I had forgotten how painful amputation surgery can be.
I strongly believe in making informed decisions based on as much information as possible, so I asked to speak to some patients who had had this procedure. They told me that they felt very positive about the results of their surgery; however, they also added that they didn't enjoy going through the surgery or the recovery period.
After reading what little literature I could find on the Ertl procedure at the time, I contacted several community surgeons to discuss the procedure with them and to compare their assessments. Unfortunately, they weren't able to give me an opinion because they were not aware of this procedure. However, they also didn't provide much encouragement and suggested that perhaps I should consider simply not wearing a prosthesis. One said that he would consider doing surgery, as I probably had a neuroma (a frayed nerve ending) toward the end of my residual limb, but he didn't offer a lot of hope on the final outcome of the surgery. This was quite different from what had been proposed to me previously: a complete clean-up and reshaping of my residual limb and the ability to bear weight more comfortably on the end, making for a much better-fitting prosthesis.
In an effort to cover all of the bases, I then interviewed and selected a new prosthetist who consulted with my surgeon because there were some significant differences in the way that my prosthesis needed to be designed to accommodate my new, reconstructed residual limb. After talking things over with my support group and family, and weighing all of the pros and cons, I opted for the surgery and flew to Chicago with my parents.
Although I dreaded the surgery, at least I knew pretty much what to expect – or so I thought. Waking up after the surgery to that old, familiar, intensely burning pain, I realized that I had somehow forgotten just how painful amputation surgery can be. In addition to the pain, which I quickly got under control by pushing that wonderful narcotic pump button every five seconds, all of the memories of my original amputation 11 years earlier came rushing back.
During the first few days of my recovery, I also did some painful reliving of why my leg was amputated in the first place. I remembered the struggle I went through in trying to beat the cancer while simultaneously adjusting to living without my leg. On a positive note, I got over the emotional roller coaster much more quickly this time around, compared to the first time. This time my life had not been yanked out from under me, leaving me to start all over from scratch. I already knew how to live with one leg, so recovery from surgery was all I needed to do this time. After shedding a few tears for all that I had been through, in a few days I returned to being the humorous, optimistic person I have always been.
Everything's Different But Nothing Has Changed
After I had fully recovered, I began the prosthetic fitting process and walked out of the prosthetist's office on my new leg after only three visits, pain-free. What a wonderful feeling, after all those years of walking in pain.
Although my reconstruction surgery was successful and I had a wonderful new leg, I gained quite a bit of weight in a relatively short period of time, a negative consequence of my decision to quit smoking before my surgery. And because I had gone so many years without a prosthesis and had never truly felt comfortable or fully functional wearing one, I decided to make that leg the final addition to my collection in the closet about a year later. I have continued using crutches ever since. But this time it was by choice, not because I felt that I had no other option.
As a result of being a peer support group leader and hospital visitor, I have met many amputees who have experienced some of the same symptoms that I went through before my reconstruction surgery. Like me, many have been told by their surgeons that they will just have to learn to live with the pain. They are prescribed medication to alleviate the pain, but this only serves to mask the problem. Some surgeons operate to try to locate and eliminate the pain, but few do a complete reconstruction surgery. Surgeons are educated and trained to save limbs, but very few of them have performed large numbers of reconstruction surgeries and even fewer are trained in the Ertl procedure.
If you are experiencing residual limb pain, with or without a prosthesis, here are a few points to consider if you decide to seek help:
Gather as much information about reconstruction surgery as possible. There are differing professional opinions regarding the Ertl procedure versus other ways of surgically trying to correct the pain problem. Some surgeons do their own version of the Ertl procedure and call their surgery the Ertl procedure.
The Internet is a wealth of information. So are other amputees.
Talk with your original surgeon first. If you are not satisfied, ask for a second opinion.
Talk to your prosthetist as well as other prosthetists in your community. They may be familiar enough with the work of local surgeons to suggest who you might wish to consult based on your individual needs. Remember, they make prosthetic limbs based on the residual limbs created by these surgeons.
Ask to talk with patients who have had reconstruction surgery by the surgeon you have selected.
Have your surgeon talk with your prosthetist prior to surgery so that they are both working together for your best outcome.
Make sure that you understand what type of surgical procedure will be performed.
Be prepared for old emotions to return.
Plan to be without a prosthesis for 2-3 months to allow for healing.
Make sure that you are totally committed to successfully wearing a new prosthesis before you put yourself through the pain and expense of surgery.
As I talk with more and more amputees who have undergone reconstruction surgery, most of them are extremely happy that they decided to have the surgery. My only regret is that I did not go back to my original surgeon when my first prosthesis didn't work because of the pain that I was experiencing. If I had undergone reconstruction surgery sooner and learned to use a prosthesis early on, I am sure I would be wearing one today.
For more information on the Ertl procedure, visit www.ertlreconstruction.com
Editor's Note: The views represented in this article are not necessarily those of the Amputee Coalition.
About the Author
Carol Wallace has a Masters of Science in Counseling and is a Certified Rehabilitation Counselor, motivational speaker, author and publisher. An above-knee amputee due to cancer, she is currently a geriatric care manager in private practice in Roseville, California.