This article tells how I have dealt with disability and terrible pain. Also, I think it serves as a condemnation of the medical treatment I have received, or, more properly, did not receive. As a result of my experiences, people experiencing pain or disability can be forewarned about what to expect. And, medical doctors can learn that more needs to be done for the patient.

In Louisiana: Exercise Always Hurts
About the time I turned 54 years old, in 1994, I was living in Louisiana, and a strange thing happened. Exercise always hurt. At that time I was undiagnosed with any disability, but in retrospect, I can see that the effects were starting to show. But, I had no understanding of what was occurring. I only knew that every time I did any exercise, no matter how gradually I did it, I experienced pain. As a youth, I had been on the baseball team in high school and on the tennis team in college. I love sports, although with age I was becoming more of an observer than a participant. But, I still did some exercise on occasion: sit-ups, push-ups, bending down to touch toes, walking, and my beloved tennis. I went to my doctor, who gave me a paper with different back exercises. Most of my physical pain was in my back and legs. I did some of the exercises, but not most of them. For some reason, I was not motivated to perform the exercises.

One day was the last day I ever played tennis. When I got home after playing, my back hurt incredibly, and I could not move enough to get out of my car. I wondered, "How am I going to be able to get out of my car and get into my house?" Eventually, I was able to move enough to get to my house. I went to a doctor, who put a heat pad on my back. That reduced the symptoms. But, I never played tennis again.

Shortly before leaving Louisiana to move to a new college job in Kentucky, I started a program of walking. I did it incredibly gradually, walking 5 minutes the first day, then 7 minutes the next day, then 10, etc. I finally got up to walking for an hour. But, then my legs started hurting so bad I had to give up walking. I got to the point that I gave up all exercise. There seemed no point to cause myself pain, which exercise was always doing. Already overweight, I probably have gained about 20 more pounds since I stopped all exercise.

I Am Diagnosed in Kentucky
In Kentucky, my back and leg pain increased. I called a doctor’s office for an appointment. They asked about insurance. I checked and saw that my insurance from my new job would not kick in until two weeks later, when the semester began. My dilemma was to wait two weeks, enduring the pain, and be covered, or go right away and have to pay from my own money, but perhaps get relief from the pain. I decided that because of the pain, it was not worth waiting, so I went right away. They x-rayed my back in various places, but found nothing. So, I had to pay, but got no diagnosis or relief.

Months later, as the pain increased, my regular doctor arranged for two diagnostic procedures to be performed on me. One was an ultrasound, to see if the very structure of some things in my body were off. They were, I was later to find out, but the ultrasound was negative. Nothing was discovered. Next, I was sent to a specialist to see if I had problems with nerve conduction. He tested this by inserting needles into the bottom of my feet, into my legs, and into my buttocks. Then, he sent electricity into my body, and got recordings of the nerve conduction. I read that it was not a painful procedure, and the nurse told me, in response to my question, that it was not painful. Wrong! It was incredibly painful. The needles were only inserted a little and did not hurt, but the electrical stimulation was either painful or extremely painful. When it was extremely painful I felt as if I was being burned, for several seconds at a time. The doctor concluded that I did have nerve conduction problems, especially in my left leg. I felt that I was better prepared to endure torture, should it ever occur. At this point, despite the positive findings of nerve conduction deficits, there was no recommendation for treatment or for medication. Instead, I got referred to a neurosurgeon.

I went to the neurosurgeon’s office only once, where I had to wait for what I think was two hours before I was seen. He asked me questions about my condition, had me bend over and try to touch my toes (which I could no longer do), and came up with a diagnosis: lumbar spinal stenosis. He said the protective covering for my spinal canal was eroded or eroding. The only proper treatment, he said, was a back operation. I was resistant to a back operation. I had heard bad things from people about back operations. When I lived in Louisiana, there was a national television news program on people in the city in which I lived, who had undergone back operations, using a new procedure, and were now suing. Instead of the operation making them better, it was alleged that they now had horrible, daily pain. The neurosurgeon said my condition was progressive, that it would only get worse. I remained adamant about not wanting a back operation. He said of my position "It is like being tortured with thumb screws. At first, you refuse to talk. But, as they make the thumb screws tighter and tighter, eventually you give in and talk." He was telling me that as my condition got worse and worse, I would eventually agree to an operation. Only recently have I seen evidence that he is incorrect. A recent newsletter report from the Mayo Clinic says that research shows that 70% of people with spinal stenosis (as they refer to it) remained the same after five years, not getting better or worse. Fifteen percent got better, and fifteen percent got worse.

So, I believe I may have been misled by my neurosurgeon about the need for an operation. I once read that if you give a child a hammer, the child discovers that everything needs hammering. Perhaps it is the case that if you give someone neurosurgeon training, they believe everything requires an operation. Also, advocating an operation does two things for the surgeon: 1. It protects him from legal consequences if a person get worse and sues, saying that an operation should have been recommended; and 2. As a medical doctor friend pointed out to me, doing surgery provides big surgical bucks. This medical doctor advised me not to have an operation on my knee years ago, when I injured it, but told me that if I went to a surgeon, I would be told to have an operation. I followed his advice and did not have an operation and, years later, the knee seems fine.

The neurosurgeon did do one wonderful thing for me. He prescribed Celebrex. This had done wonders in reducing my pain. It does not eliminate the pain, and if I have to walk any distance at all the pain is there. Shopping is especially bad, perhaps because I do more walking in a store than I would otherwise do. At times, I am bent over in pain in the checkout line. But, for most parts of everyday life, the Celebrex, which I take only once a day, in the morning when I get up, has reduced the pain. Another thing he did was have me get a lumbar MRI. He was going to use this, I think, as further evidence to get me to consent to an operation. But, after the lumbar MRI was performed and the report written, I got a call from one of the neurosurgeon’s nurses, who told me "The doctor says you do not have to have an operation. Just keep taking the Celebrex." I never knew if this was because he knew I would not consent to an operation, of if the lumbar MRI showed less damage than he expected. Or, some combination of the two.

Life in Texas
This neurosurgeon is very busy, and difficult to contact. After I moved to Texas for a new university job, I needed a report from him to justify my getting a campus handicapped parking sticker, and a state of Texas handicapped license plate. A colleague had recommended to me that I get a campus handicapped-parking sticker, since the regular parking spaces are often full. And, since almost any walking is painful for me, I was unable to go anywhere on the campus, unless I could drive there and park. I tried walking, both for exercise and to see if I could do it. I could only do it if I was willing to experience great pain. So, I almost never went to the library, the school cafeteria, or any of the other places on campus. But, it had not occurred to me to apply for a handicapped sticker, since I do not mainly think of myself as physically disabled. It is just not a main part of my self-concept, except when I stop and think about it, as in writing this article, or when I want to do something but cannot. However, I usually am not thinking "I am physically disabled."

In one case, when I walked to the Student Health Center to show the nurses my lumbar MRI report, in order to get the campus handicapped sticker, I almost passed out from heat stroke. I suspect I do not walk as easily as most people, since walking puts unusual demands on my body. I have not only the stress on a body that is overweight and has not had much recent walking or exercise, but also the stress of a body that is not responding normally to the demands of walking. I once tried to run, but was unable to get my body to respond. So, I left phone messages at the neurosurgeon’s office about needing a statement that I had lumbar spinal stenosis, but never received anything, not even a return phone call from a nurse.

Fortunately, I had a photocopy of the lumbar MRI report that said I had lumbar spinal stenosis and spondylosis. This was good enough for the campus handicapped sticker, but after waiting in line for the state of Texas (which is very difficult for me; I have to lean over onto a lectern when I teach, or sit in a chair), they said I needed an original note from my doctor. Since I have a local doctor, I asked her to write such a statement. But, she said she wanted the original x-rays and documents, before she could write such a statement. So, I was back to speaking to a nurse for the neurosurgeon, who, some days later, told me that the neurosurgeon’s office did not want to send the materials to my doctor. Fortunately for me, my local doctor was, under the circumstances, willing to write a statement based on the lumbar MRI report. I got the Texas handicapped license plate, which was require to extend my campus handicapped-parking permit, which was expiring in couple of days.

Secondary Symptoms
I think a lot of my pain may be secondary symptoms. I have the main problems of lumbar spinal stenosis and spondylosis. But, as a result, my body does things to cope, and ends up with more problems. Most of the leg pain is in my right leg, so, without realizing it, I tend to lean to the left. Perhaps as a result of that, I have had horrible pain in the front of my right thigh. Or, perhaps the right thigh pain is what causes me to lean to the left. In any case, I asked my local doctor if something could be done to help treat the pain in my thigh. At times I have terrible back pain, but the pain that is there everyday is the pain in my right thigh. She said nothing could be done. She also said an operation on my back would not be fruitful. She implied that I have these conditions and will just have to live with them.

I suspect that some of my problems are secondary to the original physiological problems. But, no doctor seems willing even to address such secondary possibilities. For that matter, no medical doctor has addressed any of the psychological problems that are sure to occur with physical disability and pain, such as anxiety and depression. Fortunately, I am a clinical psychologist and have a good understanding of these issues. But, what if I were not? My doctors do not avoid dealing with anxiety and depression because I am a clinical psychologist. They just do not deal with them because they do not see the big picture, or do not see themselves as having a role in the big picture. So, secondary physical problems are not even considered, nor are anxiety or depression.

Getting Better
In the last two months, my pain has been greatly diminished. I even wondered if I could go for a walk, which I never do any more. But, the other day, while shopping, both my legs felt like they were "falling asleep" and I felt that one or both of my legs might not support me. The same old feelings back again. By the time I was in the checkout line, my legs were hurting, and I was hoping the line would move swiftly, so I could get to my car and sit down. However, for the most part, I experience much less daily pain than I used to. Could I be one of the 15% of people in the Mayo Clinic report who actually get better over time? I sure hope so.

I have experienced the anxiety of fearing how much pain I will endure, and the depression of knowing that lots of things I used to do are no longer available to me. But, I have dealt with them as well as could be expected. I am surprised how little I feel sorry for myself. I would think that having such major changes in one’s life, including daily pain, would damage one more than it has. I just cope with what has to be coped with, whether it is getting out of bed slowly in the morning when I feel pain in my back, or not doing things I used to do because they will cause intense pain, or experiencing daily, intense pain. I do not say "Why me?" or feel sorry for myself. What has happened is horrible, but dwelling on that does no good, whatsoever. I have a disability and physical pain. I try to make the best of it. Perhaps writing this article will help others who suffer, and will provide people who do treatment a better understanding of the need to treat the whole person.

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