Amputation: one smart move!
by Sheila Forthman, CO, U.S.A.

From the time I was very young, I remember suffering with the pain associated with CMT. I would count the steps from one place to another just to make sure that I always travelled the shortest route. We had been told that at some time I had polio and the deformity was a result of the polio. I now know that the greater majority of those suffering with CMT are misdiagnosed. I could never wear dressy shoes like all the other girls because they would not stay on my feet. When we had our eighth grade graduation picture taken of the class, I wore a pair of moderately high heel shoes, which I immediately had to take off and walk home barefoot. I had begged my mother for the shoes, so the pain of walking barefoot was worth it.

When I was 16 years old, my parents took me to see an orthopedic doctor for the first time. This physician was a lot sharper than the family doctor and he made the diagnosis of CMT. It was at this time that the triple arthrodesis were done, also surgery on the toes to straighten them. Now my feet were straight and I was still in pain. My parents thought this was going to be the magic solution to my difficulty walking.

I have decided that pain and fatigue walk hand in hand. Pain just makes fatigue more pronounced. When I was working at a full-time job in my 20s, I would come home from work at 5 p.m. and go directly to bed for a couple hours. Sometimes I was even in bed for the night at this time.

I married a man in the Air Force in 1970. Military doctors are a whole different breed than civilian doctors I quickly learned. A military doctor has more freedom to be creative and does not have to worry about the insurance aspects of medical care. The orthopedic doctor was intrigued with me because he said he rarely saw anyone with CMT. All the literature on CMT will tell you that it is so common, but all the doctors I have ever seen are amazed to finally see someone with something they have only studied in medical school. I was fortunate to have such a knowledgeable and compassionate physician. Dr. Goldberg suggested I consider an amputation on the left side. The surgery is called a Symes and the amputation is done just slightly above the ankle. The prosthesis goes all the way up to the knee.

The pain of an amputation is horrific. I really questioned my judgment those first couple of weeks. After about six weeks the cast was changed to a walking cast, so at this time I began to bear weight. Walking on crutches when your balance isn't real good is difficult at best. Unfortunately, all the extra stress placed on the right foot while unable to bear weight on the left, makes the right break down worse than it had been.So now, after one year from time of first amputation, the second one was done. It took a couple of years to get both prostheses perfected, but the end result was definitely worth it. I can go to the mall and walk for hours, shopping with my daughters and granddaughters. I can take my two-year-old grandson for long walks.

I can walk without counting steps or having to take a nap to suffer the fatigue. Another plus to the surgery is that I can actually walk on the stumps without prostheses if I need to make the short walk to the bathroom in the middle of the night. It truly changes your life when you no longer have to arrange your walking schedule according to distance from one place to another.

I hate to think what my life would have been like had I not had the amputations done. After the amputations, I was able to work full time for many years. Certainly amputation is not the solution for everyone with pain and deformity, but it is something to think about. My amputations have been 25 years ago now, and I still have no regrets.

I began suffering with CMT when I was perhaps five or six years old. And like so many of your readers, I, too had a triple arthrodesis. The pain continued, the burning became unbearable, until in 1974 my orthopedic surgeon suggested bilateral amputation of the feet. Sounds pretty drastic, huh, but what a smart move on his part. I didn't hesitate too long before I said yes.

The recovery years were not exactly a piece of cake. I had a husband who moved out, and two young daughters to care for. All of my extended family lived 1,000 miles away. But you know the old saying...you do what you gotta do. And I did.
Twenty-seven years later, and I am still coping well. Some things are downright hard to do and others are as easy for me as they are for the ‘normal' population. I have noticed as I approach 60 that I am quite a bit stiffer. I still have pain, but sometimes I can actually block it out, and if I can't, I don't let it stop me from doing what I want to do. I had to quit working full-time four years ago because of osteoporosis. I had fractured my pelvis and the extra pain was just too much. So now I do volunteer work at the school one day a week. I take a quilting class and sew in my free time.
My greatest enjoyment, though, is the three grandchildren. We love having them here at the house overnight. I drive five miles about three times a week to take my two-year-old grandson for a walk down the street. He seems to know that I can't chase him so he never lets go of my hand.

So much of the information in the newsletter is pertinent to my situation, but then there is always the feeling that "I am better off than you are."