Educating our PCPs
Andrea's story

I was diagnosed in March of 97 with a 2.1 x 2.8 cm AN. This was after I had had problems hearing in my left ear for some years. I finally went to the right doctor and he ordered an MRI and there it was!

I was sent to Yale New Haven to a microsurgeon for consultation. He said "operate" - 10 to 12 hours under anesthesia. Well, that didn't interest me in the least, so I took to the internet. Looked up everything I could on AN, found the ANA and the listserve and got a message from someone who had GK about that option. At that time, believe it or not, FSR was not heard of too much -- I mean that no one wrote on the listserve about it (as opposed to now that we hear so much about it). I right away started inquiring about GK and it sounded quite good.

My primary care physician was against radiosurgery, he was a sceptic and wanted me to "get
that thing out".  Luckily, I talked him into getting me a referral to the GK center in Rhode Island.  Dr. Georg Noren in Rhode Island Hospital was trained in Sweden by Dr. Leskill (who invented the machine whose name it bears). I went there and he reviewed my MRI and said that it could be done. (I was worried that mine was too large -- I think about 3 CM is the limit). My treatment took place on April 24, 1997...

We checked into the Coop, which is a hotel-like facility in which you can get medication if needed. We stayed the night before so as to be ready at 6 am for treatment. Then we stayed the night after treatment so that they could check vital signs before discharge.

Well, I started out at 6 am with a vital signs check and a little valium to "calm" me. I was taken to the GK center at the hospital by wheel chair - my husband came along. I was then fitted with a frame which sounds awful, but is not really. They put novocaine into your forehead and back of head and place a metal frame onto your head. They need to do this so that they have a way to fix the tumor's position on the MRI and/or CAT scan. I had both.

Then you go back to your room. You can have a light liquid lunch (no martinis though!). During this time they are plotting the course of the GK invasion. They do this by computer and the experience of the doctors on the team.

When they have figured out how to attack the tumor, you are sent for and brought back for treatment. The treatment each person gets is different as far as time and intensity is concerned. Mine took a long time and I went into the machine 24 times. However, if the tumor is smaller or more rounded, it could be 2 or 3 times.

The machine looks like an MRI machine -- there is a bed with a hair-dryer-like compartment on the one side. This is where your head goes for treatment. The idea is to shoot 201 rays at the tumor, which converge on the tumor, but which do not hurt any other part of the brain that they travel through. You lay on the bed and are electronically connected into the head frame. Each session is from 1 to 5 minutes. Then you are taken out and the holes in the head frame are repositioned and back you go. Each time I went into the machine the angles of the holes were changed so that it would attack from another angle.

This did not feel like anything while it was going on. Between sessions, I got up, could have liquids, go to the bathroom, converse with my husband, etc. I tried not to detain too long as my treatment consisted of 24 times and we were all counting backwards! With the time it takes to readjust the head frame and in some cases change it altogether, I did not want to waste any time. As it was I was finished at 11 p.m. Let me say that this in not normally the case. Patients usually finish before supper and can then have a regular supper.

When they are finished, they take the metal frame off your head. There are four tiny holes which they treat with an antibiotic and wrap - like a turban! When you get back to the coop, they take this off, put bandages on the forehead ones, check your vitals, and give you a Tylenol 3. Actually I was hungry when we went to our room and my husband stopped at the cafeteria and got me something to eat. I was real tired and went right to sleep.

The next day, we were discharged and on the way home stopped for lunch. I took the week off but could have returned to work in two days. At the beginning, the novocaine they use in the forehead causes your eyes to swell a bit - it is uncomfortable and you need to put ice packs on until they go down again. Other than that, there are no complications.

Now at one year after, my MRI shows that the tumor shrunk 3 mm and there is a dark spot in the center of the tumor indicating that it is dying which is the whole idea of the treatment! I  have only a little numbness in my tongue on the left side which Dr. Noren tells me will leave when the tumor shrinks more. I still have tinnitus but it is less than before treatment. I still have a bit of a balance problem, but that comes with any middle ear problem and I'm working on it -- it is getting better. I still have only 20% hearing in my left ear, but surgery would have left me completely deaf in that ear.

GK has a 95% rate of shrinkage of the tumor in 5 years time. It is a treatment in which you have to be patient. But it does not produce all the side effects that I read of with surgery. We all have to choose a way of dealing with this AN for ourselves and I hope my story helps you a little. As I said, if it weren't for someone sharing with me, I would never have known about GK.

On my return visit to my PCP, I told him all about my procedure. He was so excited and wanted all the written info that I could get. He then confessed to me that if he were ever diagnosed with an AN, he would go GK too. You see, I was the first AN patient he ever had...  My only reason for stating this is that sometimes we give our PCP too much control over our health. And let's face it, they do not know everything, nor would they be able to know as much about each individual problem as the one
who has the problem. We are the ones who should do our own homework, then consult with them, and if we are convinced about a way of treatment and go for it, we can contribute to their education and updating also.

To reach me, my email is Pelican94@aol.com . Anyone can contact me at:

1 Old Dodgingtown Rd., Bethel, CT 06801-3213.

Andrea Kennedy
June 1998

Last Edited: Wednesday, October 30, 2002