Teenage Growing Pains?

I have a long history with Central Neurofibromatosis (NF), which began at the age of 17. My first symptoms were loss of touch sensation in my finger tips and some loss of balance. At age 18, (1981), I had a CAT scan of my head which I was told came up negative. So not knowing what was wrong, my doctor put me on tranquilizers. Obviously, they did not help. I then went from one doctor to another, including the ER at the local Hospital, searching for a solution to my problem. I was told a number of times that it was the stresses of being a teenager that were bothering me. As you can imagine, I didn't buy that.

I started to see a Chiropractor three times a week, since he thought he could help; yet my symptoms continued to worsen along with sleep apnea and overall muscle weakness. After close to two years and getting nowhere, I went to a different Chiropractor and after seeing him only five times he suggested I go to a neurologist, which I did.

In 1984, the doctors at Abington Memorial Hospital Neurology Clinic could easily see something was wrong and wanted to admit me right away. I told them that I had had a CAT scan done three years earlier and they wanted to see it. I got copies of the scans and was admitted to the hospital the next day. Upon looking at these three year old scans, the doctors diagnosed me as having two acoustic neuromas, one on each side, a tumor inside my brain stem and in my cervical spinal cord.

Finally, a Correct Diagnosis

Now that I knew there was something big wrong with me, I transferred to the Children's Hospital of Philadelphia (C.H.O.P.). I was then 21 years old, but they accepted me despite my age, probably because of the rare condition I was faced with and they knew I really needed help. There I was told I had Central NF and on March 9, 1984, I had my first brain stem surgery. Things went well and I returned home, but the damage from the tumors was done and permanent.

A few years later, I was living in a small apartment by myself and going to the Community College of Philadelphia to begin studying engineering. My condition started to feel like it was getting worse again. After having another MRI, we found out the brain stem tumor had grown back. After being told this, I dropped out of school and flew to Dallas, Texas where my neurosurgeon was then located.

Then, on June 12, 1987, I had my second brain stem surgery. After this I went back to Phila., to Magee Rehabilitation Hospital. Everything was going good. I was up walking, breathing, eating and had normal hearing, although my muscular strength could be compared to that of a 13 year old, caused by the spinal cord damage.

Then, in July 1987, in an attempt to kill the residual brain stem tumor which still remained, I began taking radiation therapy. Besides my brain stem and cervical spinal cord, the radiation was also applied to my acoustic neuromas in hopes of either killing them or shrinking them down. These radiation treatments were a disaster. Within a couple weeks of finishing, I was struggling to breathe and ended up in Hahnemann Hospital on a large amount of Decadron (a steroid), to reduce the swelling of my brain stem caused by the radiation. While in the Hospital, I began to have seizures. My diaphragm had become paralyzed. I completely lost the hearing in my left ear, with decreased hearing in my right ear, started to develop a cataract in my right eye and could barely stand up. This all happened in less then two months. Before beginning radiation therapy I had to sign a consent form which had over fifty possible harmful side affects of receiving radiation treatment and I recall the doctor saying "don't worry about these things, they only happen to one or two percent of our patients".

Once my condition was stabilized I went back to the Rehab. Hospital for a while. Then I went to Temple University Hospital for the first time and had a meningioma (tumor) removed from on top of my brain. That surgery went very well, no problems. (Back to the Rehab. again). A few months later I went to Temple again, this time to have my left acoustic neuroma removed. I figured, since my hearing on that side had already been lost there was nothing else to lose and I wanted that thing out of my head, but nobody told me that my face could be affected so when I woke up after surgery my facial paralysis was a big surprise.

After that I went home for a few weeks but then went back to Temple.This time the surgeons did a procedure where they disconnected the nerve which controls the left side of my tongue and connected it to my 7th nerve. I was told that although this procedure would cause paralysis on the left side of my tongue, it would regain my facial function. I remember saying to the doctor before hand that I didn't like the idea of having half my tongue not working. He said "that's a small price to pay to get your facial function back". Like a sucker, I fell for it. After recovering from the operation, my face never got any better and I began having trouble swallowing . After this I talked to my other neurosurgeon from Texas about this and he told me that he did not like doing that procedure because developing swallowing problems was a known possible risk.

Eyesight in Jeopardy

Again I was in the Rehab. Hospital and the cataract which started to appear in my right eye after taking radiation therapy was now getting bad. Due to a cataract I already had in my left eye since Birth, I could never see with my left eye so now the one in my right eye was causing me to go blind. I went back to Temple to have the cataract removed from my right eye and received a lens implant. This was very successful saving my eyesight.

Directly after my lens implant, I returned to the Rehab. Hospital. It was now early December 1988 and I was feeling sleepy all the time, so much so that I would even doze off while in physical therapy or when talking to someone. Then one day I was with my counselor and fell asleep. The next thing I knew I woke-up in the Intensive Care Unit at Temple. I was then 25 years old, with double pneumonia, on ventilator life support (that includes a tracheotomy tube), and had a feeding tube. After the pneumonia got better, I found out that because of diaphragmatic paralysis (caused by the radiation) I was using my chest muscles to breath. These muscles were not real strong and were therefore being over worked. This lead to me not being able to exchange Oxygen & Carbon Dioxide properly in my lungs and I was retaining too much CO2. So that is what was making me fall asleep or actually pass out.

For about a year after being put on life support in 1988, I lived with my parents, using the ventilator only at night, but then my condition got worse. My body was gradually getting weaker, leading to overall paralysis. In 1990 I returned to the hospital and had another MRI which showed two tumors back in my brain stem and 12 tumors around my Medulla, also the acoustic neuroma still in the right side.

Serious, but Stable

Ever since, I've been in a nursing facility on the ventilator full time. Although I seem to be relatively stable right now, all of those tumors are still in there and only God knows what will happen next.

Addendum

I would also like to tell you about something that happened a few years ago. On June 28th, 1997, I became unresponsive, in that the nurses were unable to wake me up. I was sent to Quakertown Hospital for evaluation. There the doctors found out that I had severe internal bleeding, caused by a bleeding ulcer in my esophagus and a bleeding, perforated area of my stomach, along with a blood clot which was said to be larger than a softball. With me still unconscious, the doctors told my family that I was already brain dead and I would not survive, yet in a desperate attempt to stop my bleeding, on July 4th they performed emergency surgery to remove both the damaged bleeding area and the blood clot from my stomach, in hopes of stabilizing my blood pressure and level.

After surgery, the doctors continued saying I would not make it and that I was brain dead, but Thanks to the love and many prayers to God from my family, friends and many other loving people God listened and blessed me saving my life (again).

Around the end of July, to the doctors disbelief, I woke up, my bleeding stopped, and I left the hospital a couple weeks later, leaving the doctors something Miraculous to think about.

NOTE: The human body normally contains approximately ten (10) pints of blood. While I was in the hospital, in about a five to six week period I was given a total of thirty-three (33) pints of blood. The blood was coming out of me almost as fast as they were putting it in!

Sincerely,
Richard Copp

Back to MLMUG's "Community Service Page" on Richard Copp.

Update: Regretably Richard passed away on Friday, Oct. 24, 2003.
Read Richard's Obituary, as provided by Jan Feigus, from a local paper.