Dorsal Root Entry Zone Procedure, 1984 and other remedies
By Sofiea Clerico
Update: Because the pain has come back in recent months, I am again searching for help. I’ve made an appointment in October (2009) with Dr. Gregorio Pineda, a Bakersfield neurologist and an exceptional doctor I saw long ago. He also was professionally and personally helpful when my daughter was ill.)
Further update: I found a fascinating paragraph in a book I’ve been reading, “Spinal Cord Injury and the Family” by Michelle J. Alpert, M. D. and Saul Wisnia. “In the 1980s another procedure, the dorsal root entry zone (DREZ) ablation, was recommended for treating severe spinal cord injury pain, since it essentially destroyed the nerve cells that were thought to be the source of painful sensory information within the spinal cord. It, too, eventually fell out of favor when complications such as increased weakness and new sensory loss were noted.”
When first injured, a warm and friendly registered nurse came to my bedside. She told me she had been asked by a mutual friend to see me. She gave me some direct, very helpful advice.
“You are responsible for your own body and for learning how to care for it. While you are in the hospital, check your meds to be sure they are correct before taking them. Always be sure you know what is prescribed by the doctor, then double-check to be sure it is exactly what you are given.”
My nephew, Dr. Norman Bussell, then an Army doctor, also gave me some advice : “If you haven’t found a doctor who can help you, keep looking until you do. Remember, the science of medicine is quite different from the art of becoming famous. You will find some of the most humble doctors are the best diagnosticians or are very good at treating your illness or injury. Don’t give up! Don’t settle for third-rate care when you should have the best.”
Dear nephew …. I try.
The pain had become worse every year since the accident. After a long and profoundly discouraging search, I finally discovered Dr. Blaine Nashold and Duke Hospital in Durham, North Carolina. After a brief phone conversation with Dr. Nashold, I flew alone from California to North Carolina for evaluation.
Hospital records showed I entered on January 29, 1984 and left February 20 to fly home. I made it with a great deal of help from kind and helpful flight attendants and cab drivers who didn’t appear to mind carrying a 140 pound woman to and from the cab. It still astonishes me that I made it alone.
Pain had been a constant companion from the beginning. It was usually a pain in all the areas I was paralyzed, I can’t accurately describe it, but in vague general terms it was a little like an electrical current turned up very high. Many times bed rest and quiet would cause it to go away.
A few months after I ran for city council in 1975, the pain began to worsen. My friends joked about it. The prevailing opinion was that I was disappointed by my loss. I knew better.
I had made one trip back to Rancho Los Amigos Pain Clinic to have an evaluation of my pain. Dr. Pace oversaw my medical care there. They gave me many tests and observed me for a while. Eventually Dr. Pace arrived at my bedside and pronounced me “neurotic.” He told me my pain was caused by my “neurosis.” He and other doctors kept telling me “the medical model” indicated spinal cord paralysis didn’t cause pain.
My disgust ran deep. I don’t think I did more than protest politely. What I wanted to do was gather my things and go home. As soon as possible. Heaven knows I have at least the usual number of neuroses, perhaps even more than the average. I couldn’t see how that could cause me to have so much pain.
As it happened, Dr. Pace was writing a book on the subject of pain. He asked me if I would mind typing it up. Without asking him nearly enough questions, I agreed. The book was called “Pain: A Personal Experience” by J. Blair Pace. His theory was that typing the manuscript would help with my rehabilitation. ??
Instead of mailing his recorded cassettes, he drove to Bakersfield from San Diego or Los Angeles to deliver it, usually on Saturday mornings. The second Saturday he took my out for an expensive dinner. Payment was never forthcoming for the typing, and I didn’t feel I deserved payment. I don’t think I did a first-class job and by the end of the book I could hardly stand to look at the material.
In short, I felt his thesis was wrong He published the book in 1976 and it is still rattling around on internet used book sites.
The pain continued to increase and after a time I checked into Santa Barbara Cottage Hospital at least a couple of times. The last time I was there was. well, interesting. They sent me to a small convalescent facility (which looked similar to a lovely residence) on the side of a hill to give me a complete evaluation.
The facility was in a beautiful setting and had many charming patients. I enjoyed dining in the main hall at the end of a day. They put me on a diet of fresh fruit and vegetables with very little meat. I lost 12 pounds in a hurry.
Each day I had some physical therapy and spent some time with a psychologist who seemed to think I was not a nice person. Sigh, oh well. You can’t please everyone.
One problem was that once in the hospital I experienced much less pain. At home I was constantly trying to do housework and maintain some kind of social schedule while mothering my three very active children. In the hospital I did very little.
Four doctors did rounds together. They were determined to convince me I was neurotic and imagining my pain. Neurosis aside, I still didn’t get how I would go about imagining these bouts of terrible pain?
One evening a young man came into my room to play his guitar. He told me he was worried about me being lonely, so far from home. I was lonely and his beautiful music made me feel much better. Soon I heard someone in the hall giving him a thorough dressing-down. After that I was not allowed anyone but nurses in my room
A few days later a nurse wheeled me into the bathroom and turned on all the faucets. She then advised me to tell the doctors I was going home. Her theory was that my insurance was so good they would keep me there unnecessarily. Whether or not that was true I didn’t know. A quick telephone call brought my kids to come get me. No progress had been made.
The time I spent at Cottage Hospital did teach me a lesson. When my boss, Mr. L. K. Whittier of Belridge Oil learned I had spinal cord injury, he told me I would have health insurance for the rest of my life. The insurance continued even years after Mr. Whittier’s death. He transferred the cost of the insurance to Aera Energy when he merged the oil company with them. They paid it for many years, but cancelled it roughlyt 12 years ago (while hospitalized with yet another complication.)
The insurance cancellation was a blow from which I am still recovering.
The problem of pain reamins. I was never sure what caused the pain, though I often said, “I must have overdone.” Even after these many years, I’m not sure what brings it on.
Time went by and the pain worsened. At times I’d give in completely and go to bed. The pain would be worse the second day and even worse the third. At time I’d notice a distinct body oder which I associated with the pain.
Later I made an appointment with doctors at the Santa Clara Health and Hospital. They took about 20 minutes to repeat all the stuff from the “medical model” which I had already heard. They were not friendly, nor funny. They just wanted me to take their advice and go away.
Then I went to a Dr. Gregory S. Pineda, a Bakersfield neurologist, for an evaluation. The first time I went I waited quite a while. The second time I went I was in a great deal of pain. After a while I left. I was so discouraged I was afraid of hearing the “same old, same old” from him after waiting for what seemed an interminable period of time — but probably wasn’t.
My biggest mistake! Dr. Pineda had the correct diagnosis to my pain problem. I didn’t go back to him and let him tell me. My discouragement and disagreeable decision led me astray. Next time I will wait patiently.
On my last trip was to Rancho Los Amigos. I saw a young doctor who thought I might benefit from Harrington Rods. Without telling Dr. Pace I checked in for the surgery. Somehow Dr. Pace found out I was at the hospital. He burst into my room and told me he would never allow me to have Herrington Rods implanted. Then I heard him out in the hallway yelling at the young doctor.
At the moment it was a moot point. I had come down with measles while waiting for surgery. I called Kevin again and asked him to come get me. If I remember correctly I had the hard measles when I was 13 and then again at Rancho, ( in my mid-thirties). Everyone told me it wasn’t possible to have the measles twice. But I did, or I had something very like measles.
Whatever was wrong with me “wasn’t possible” according to the medical model, I was told so many times. Grin and bear it was all I could do. Practice made my grin better, at least.
I went home without Herrington Rods. Dr. Pace may have been right about them, considering what is now known. However, I chose not to see Pace again.
One day I had a huge, extremely painful muscle spasm over my entire body. I felt sick from the pain. My regular doctor put me in the hospital and ordered a large amount of pain killer for me. The hospital stay only lasted a few days, then I went home and mostly stayed in bed.
At least while in bed, I had no more of the horrible spasms.
Reading the Los Angeles Times one morning I stumbled across an article about Larry Flynt, owner of Hustler magazine. It dealt with his battle with pain and a surgery he had had recently which helped him. I read to the very end of the article, then telephoned the writer and asked for the telephone number of the doctor or the name of his hospital.
The writer couldn’t find either in his notes, so he offered Flynt’s private phone number. I really couldn’t imagine myself calling him, but I did after the writer assured me his secretary would answer. She did and gave me the number. The next thing you know I had Dr Blaine. Nashold himself on the line.
He asked me if I felt pain when I was in a car going over bumps. I told him yes, and that I always screamed involuntarily. Nashold assured me he could help. I made an appointment with the hospital and flew back to Raleigh-Durham, a place I knew little about.
Dr. Nashold was impressive. Tall, handsome and eloquent, he looked like a doctor from central casting. Best of all, he was thorough in his questions and kind enough to listen to your answers. How you come to appreciate the word “kind” in medicine.
He quickly ordered an x-ray requiring a shot of dye into my spinal cord. The radiologist told me to “hold still.” So what was I going to do, “wriggle?” If you are paralyzed and cannot move, what are you going to do when told to “hold still?” Move around? You can’t. Any movement is involuntary. So, confused, you do your best.
The x-ray told us quite a bit. I couldn’t help but wonder why the many neurosurgeons who had heard my complaints over and over had never thought to order that x-ray? Apparently I wasn’t convincing.
Then I was sent for some really curious tests called “Evoke Potential.” These tests helped unravel the mystery of my pain.
The answer clearly was to cut the cord. Somehow, even though I was, for all practical purposes, a complete injury, a little bit of sensation was getting through. Dr. Nashold and 11 other doctors performed a surgery which lasted 12 hours. The tethered tissue which caused the agonizing pain when I went over bumps or transferred in or out of bed was also taken care of.
There was more, but I didn’t ask many questions after it was over. i just waited to see if it would help. After about a year, I had mostly sorted out. I still had pain, but it was mild. Mild, that is, compared to what was experienced before the surgery. I could make it worse by allowing myself to get tired or to sit up too long, but it was easy to see what I had done wrong. I could easily live with this kind of pain.
In short, the pain was manageable. The flight to North Carolina was expensive. It was terrifying in my condition to fly alone. The unknown tests and procedures were frightening, but I never allowed myself to be afraid. Fear wasn’t an option. I still had my children to rear.
As the years have passed, though, the pain has come back.