It's My Tumour and I'll Die if I Want to
I am working on my story. Here is the first part. It may take a while...
In the fall of 1990, I left an abusive and dysfunctional 18-year old marriage. I had just started a government job and had rented a house where I had moved with my three children, then age 13, 10 and 7.
On Christmas eve, 1990, a spot near the back of my tongue felt like I had burned it. After about one month, it was still there but now affected more of the tongue. I went to see the family doctor. Upon an examination he could not find anything wrong, but said it was rather odd and told me to come back in another month if it did not improve. He told me to come earlier if it got worse. I was hoping it would disappear the way it came, but it got gradually worse.
In March, 1991, I managed to get a mortgage, and we were able to move into the house in April. In May, 1991, the numbness extended over the left corner of my mouth and most of the left part of my face, so that it was hard to ignore. The condition did not impair me, but I felt I needed to know what was causing it. I went back to the family doctor. A CT scan was ordered, and he also set up an appointment with an ENT specialist as well as a neurologist.
By that the time all that had happened it was September. The ENT specialist did not find anything wrong and my hearing was fine. After the CT scan was taken I was told to see the neurologist, the same day. I intuitively thought I had tumor.
Upon seeing me, the neurologist, a very nice older gentlemen, told me that he has good and bad news, "OK", I said: "Bad goes first". BAD: You have a tumor and it has to come out and you will lose your hearing in one ear. GOOD: It is benign and very, very slow growing. I have set up an appointment with a neurosurgeon. Although, this was very harsh news, I really appreciated the honesty and forwardness. The relief to know what I had relaxed me enormously.
Now that I had the stark facts, I was faced with the decision of whether or not to tell my children. I decided that I needed to find out a lot more about the condition first and would hear what the neurosurgeon had to say. The confusion started to set in when I got the date to see the neurosurgeon. It was in less than a week. If the tumor was slow growing, what was the hurry? Needless to say, I was eager to find out. The neurosurgeon snapped my CT film up on the light panel and pointed out my problem. He explained to me, (pointing to a white mass that looked like a very sloppy Easter egg in the making), that this was presumed to be an Acoustic Neuroma of medium size. It was about 2.5 cm in diameter, not small by any means. He went on telling me that 3cm and up was considered large.
"It has to come out but there is a price to pay. You will lose your hearing on the left ear." He briefly mentioned the risks, including death and stroke but a much bigger possibility was the facial paralysis. He made an appointment for me to see his "buddy", the ENT specialist and ordered an audiogram at the ear/nose/eye clinic. The audiologist asked me why the audiogram was ordered, since the tests indicated perfectly normal hearing, I told her about the numbness on the left side of my face and the tumor suspect of an Acoustic Neuroma. She said: "If you have an Acoustic Neuroma, there is a support group". Along with that comment, she handed me a booklet and the last issue of 'The Connection' newsletter. This is the Canadian ANA. I am still very grateful to this petite, dark haired lady named Christine who handed me the information.
After I heard the word 'support group', I knew it was serious. After I had read the booklet, there was no way I was going to have my head cut open. I started to feel rather special to have such a rare tumor. Having been in the informatic business for almost twenty years and knowing the rapid progress in technology, I simply could not believe that anyone in the nineties had to have their head cut & drilled open.
The last article in the CANA news letter was an article of a woman who had traveled to Sweden to undergo Gamma Knife treatment. There was a phone number in Toronto and I immediately contacted her. She had collected an impressive amount of data and was kind enough to photo copy it and send it to me. In the meantime I was determined to get all the findings on AN treatments available. All the medical libraries available via Gopher on the Internet those days (1991) required subscription payments and as a single parent I could not afford the fees.
By now it was Halloween and I had seen the ENT type a boyish looking specialist. I figured it was a good idea to ask him about the GK. He said it was only used on elderly patients and people with health conditions who would not survive an anesthetic. It was ineffective and all the older people were likely to die if something else first anyway.
In the meantime I had told the children what I had and by then I was able to tell them that I could have a treatment that would shrink the tumor. I made sure to tell them it was benign and not life threatening which seemed to lessen their worries.
Shortly after that I had my second visit with the neurosurgeon. I was now much more informed and had devoured all the studies I could get my hands on. He told me he had a date for my surgery, December 19, 1991 Merry Christmas! When I asked about Gamma Knife, he said: "You are on your own!" I told him I would rather live 10 more years of 'normal life' than 30 years disabled. His answer: "You won't live 10 more years!" "It's My Tumour and I'll Die if I Want to"... these were my roughly my words to the neurosurgeon. At that, I left his office.
Now I was smack in the chasm of two divided schools of thought on acoustic neuroma treatments.
In May 1992, I traveled to Stockholm/Sweden for my first (I thought only) Gamma Knife treatment. It was a wonderful experience. The day after the treatment I took a cruise around Stockholm. (Description of the GK treatment).
The story will continue soon.
Lisa Probst <Lisa.Probst.lprobst AT nt.com>
Last Edited: Wednesday, October 30, 2002