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The surgeons do not have to live with the results
Robin Moyer's story

My story is a long one, so I hope you all can bear with me. I wanted to put down in words every thought, feeling and experience that I have dealt with over the last few months. This will help me in my recovery.

My first AN symptom was mild hearing loss, starting over 2 years ago. It was so minor, that I gave it no real thought. When I answered the telephone with my right affected ear, voices were distorted. So I just shifted the phone to my left ear. End of story.  My second symptom was increased tinnitus in the affected ear. It was so slight, that again I gave it no thought. I have had low level tinnitus in both ears anyway since my 20's, due to rock concerts, bars and loud steros. Again, end of story. 

My third AN symptom was the ONE. My husband, daughter, and I planned and traveled to Walt Disney World in October of 1998. This trip was a big one, the one we always dreamed of taking. We were excited, thrilled and a little scared, because this was my daughter's first plane ride. She handled it like a pro. I, on the other hand, had a problem. It didn't show up for 2 days, but when it did, it was a doosie. After spending one whole day in the Magic Kingdom, and one whole day in Epcot, we were becoming exhaused. The night after Epcot, we went to bed very early, as we were getting up the next  morning at 6 am. After turning on my side to fall asleep, I realized the bed was moving. Not just moving, but pitching!  Left, right, back and forth, I felt like I was on a ship in a storm!!  After about an hour of this, I had to stretch my arms and legs out to the sides, and trick my body into thinking it would not fall out of bed. When I told my husband the next morning, we both laughed at what a light weight I am on rides, and how they affect me. The next night it happened again, not as bad but bad enough that I could not ride many rides at MGM the next day. And I started to get dizzy when I walked the parks. The bed pitching subsided as the week progressed, but as soon as I returned home, it started again.

My first visit with my GP was 2 weeks after the trip, and I was told it was probably an inner ear imbalance from the plane. They gave me Antivert, and told me it would go away in about 2 weeks. It didn't. I was getting dizzy spells at work, to the point that I had to leave early on some days. I wasn't walking straight, and was bumping into things. So back to my GP I went, and that's when they ordered an MRI. This was taken 2 days before Thanksgiving, and the results were back the day after. My GP called around 5 pm that Friday night, right as I was leaving the house. I remember him telling me I had a benign tumor in my auditory canal, that it wasn't cancer, and would never be cancer. It was called an Acoustic Neuroma, or a Vestibular Shwannoma, as he liked to say. It was just like a "wart". A nuisance, so to speak. He said it was about 1cm, small enough that treatment should be easy. (YEAH, right) He said he would let me know in a few days whether I should see a Neurosurgeon, or an ENT.

While I was waiting for this referral, I needed to see my GP for another test. As I was sitting on the table in my beautiful paper gown, I started to study the picture of the ear in the office. When my GP came in the room, I asked her to show me where my tumor was, and I pointed to the ouside ear canal. (I had no idea up to this point how serious this tumor was). She looked at me with great sympathy, and said, "Robin, It's back here", and pointed to the nerve running to the brain, the eighth cranial nerve, which contols hearing, balance and facial function. My heart dropped to the floor.  Because of where the tumor sat, they referred me to a Nerosurgeon. And so my nightmare began.

The first of many Nerosurgeons looked at my MRI, slouched on his desk, and stated "I'm not touching it". If I do, you'll be deaf, and have more problems than you know. Live with the  dizziness, have another MRI in 6 months, see you later". I was stunned. I walked out of his office in a daze.

My family was happy, because they didn't want me to have surgery. But they did not have to live with the symptoms. So for 2 weeks, I dwelled on this, and it started to get to me.   My dizziness got worse, my tinnitus got worse (real or imagined?), everything bothered me. Christmas was coming, and my mind was not on it. I had to find another answer to this diagnosis. There had to be other options. I could not live like this.

One week after Christmas, I had my second appointment with an ENT. Again, he had no real answers for me. He said I had options, but he couldn't give them to me as he did not treat people with AN's. While in the office, I had a hearing test, and they found what they said was profound hearing loss. So, I was referred once again to another Neuosurgeon. This one was the BIG one, down at Thomas Jefferson University Hospital in Philadelpha. This one saw a lot of people with AN's.

Again, I had to wait for answers for this problem. My husband and I did not have the Net, so I had to check in book stores and librarys for literature on AN's. And there wasn't much. I started having panic attacks, and depression. I couldn't eat, sleep, or function normally. I could not think of anything but my problem.

My family was worried sick, and could not help it. I needed some answers. I asked my sister, who had access to the Net at her work, to find me anything she could on AN's. She pulled hundreds of pages off the net on AN's for me, and I read them all in one night. And they scared me. It seemed the most common treatment for AN's was surgery. And some of the surgical stories were horrifying. I did not want to live like some of these people, with little to no quality of life. So I started focusing on the articles written about radiation treatments. And I liked what I read. It seemed the side affects of radiation were lower than surgery, that in a lot of cases, hearing and facial function was preserved. This was the way I wanted to go. But would I find a doctor willing to treat me with this procedure?

Well, on January 13, 1999, I saw the BIG AN doctor at Jeff. He was a great guy, but would only do surgery on me. And pretty much quaranteed I would lose all hearing in my affected ear. But he would save my facial nerve. Kinda like trading one for the other, you know? Well, I did NOT want to lose my hearing, and demanded they do another hearing test. When the result of that test came in, the Doc was shocked. I had much better hearing than he thought. So, he gave me some real good, solid (finally!) options. I could wait and watch, and get another MRI in 6 months, I could have surgery, or I could have radiation treatments.

Hurray, the magic word!! Radiation. And as my luck would have it, he gave me the name of the BIG doctor who ran the Sterotatic Radiation Units at Jeff. I was on my way!!! But then I started to worry again. What type of radiation would they use? The other doctor thought Gamma Knife, but I did not like the statistics of Gamma Knife vs. FSR. Everything I read about radiation pointed to FSR being the better of the two. So, more worry, more anxiety, more depression. Would this ever end?

The one thing that kept me from going completely crazy was my faith in God. I prayed for answers, and prayed for strength, and guidance. I felt whatever happened from then on in was in His hands. And I was right. On January 16th, 1999, I consulted with the Doctor who would do the radiation treatments on me. And was elated to learn that Thomas Jefferson did indeed do FSR, and that I was a great candidate for this treatment. I would be receiving 5 treatments a week for 5 weeks.  That seemed like alot, but this way, the dosage of radiation to the tumor is high, but the surrounding tissues receive low to no doses, and have a chance to heal.

I was scheduled for my headframe fitting, with another MRI and CT scan, a week later. The headframe is non-evasive, with no pins screwed into your head. They make a mold of your mouth, then fit the "halo" headframe on your head with velcro, then make a back piece, which is all attached together. Then an MRI and a CT scan is taken with your hardware on, so that a treatment plan just for you can be made. This treatment planning takes about a week.

On February 17th, 1999, I received my first FSR treatment. I was a little nervous, as radiation does come with its own risks. But the radiation therapists, and everyone at Jeff made me feel so relaxed and calm, that the worry did not last long. I was put into my headpiece, layed on the "couch", the headpiece was screwed into the table, so my head could absolutely NOT move, then I was measured. These measurements were taken in the original treatment planning, and they had to match up EVERY time within the mm. After the measuring was complete, the therapist left the room, and I was "shot". The LINAC arched around my head for 30 seconds, the stopped. The therapists came back in the room, measured again, left, the LINAC arched again, stopped, and this was repeated 3 more times. The couch was moved each time for different angle attacks on the tumor, and this all only took about 2 minutes.

When I was finished the treatment, I got up from the table, left the hospital, went shopping, had lunch, cleaned my house, cooked dinner for my family; in other words, lived a normal life.  I did this for 5 weeks, and in those 5 weeks I suffered no headaches, no fatigue, no nausea, no hair loss, and no facial weakness. I had a hearing test 2 days before my last treatment, and it was just about as good as before I started treatments. I pray my luck holds out. I did have some swelling in my ear, and some increased tinnitus, which was addressed with steriods.

I am very happy that I chose this method of treatment for my AN. I guess the only downside to this type of treatment is the waiting. I will not know if the radiation worked for about 6 months.  But I can live with that. I urge anyone newly diagnosed with an AN to research all the options available to them. The doctors who operate on them do not have to live with the results. They do. I hope to update this story with good news at the end of the year.

Note: I have left out all the names of the doctors that treated me;  I will supply them upon request.  Please feel free to e-mail me anytime.

Robin Moyer <robin.moyer AT verizon.net> 
April 1999


Updates

(July 1999). I had my first hearing test 4 months after treatments, and it's the same as before treatments, thank God!!! Of course, my ENT had to burst my bubble when he stated "Come back in 6 months for another test, because that's usually when radiation takes away more hearing" I did not need to hear that.

Also, had my first MRI since my last treatment (March 23rd), and my radiation doctor looked at them.Well, It looks like the tumor got a little larger since my MRI in November. My doctor is not concerned, however, as he feels there may still be some swelling left. He is very happy with the results of my hearing test, and feels that the radiation will kill this tumor. I am also confident that it will work, and am very happy that I chose radation as a treatment.

I want to thank Dina Goldin for her wonderful work on the AN archive, I found the information there invaluable!! I am also grateful to the ANA for thier newsletter, and AN Guestbook. I would be lost without them!!

BTW, I am still having no side affects whatsoever from the radiation, although tinnitus was a real problem for awhile. However, it has returned to its base level, with a few bad days thrown in. I will update this story again in 6 months.

(Jan 2000) 1/4: Had my (almost) 1 year MRI, and dropped the films off at my Radiologist's office, with a promise that he would call ASAP with the results. Then, went on to my ENT's office, where I had another hearing test. What wonderful news the Audiologist gave me! The test showed a slight improvement in my hearing! We were both thrilled, as was my ENT. I now don't have to go for another hearing test for 1 year, unless something happens, which I'm sure will not.

1/7: Got the call from my Radiologist today, and he told me the tumor was the exact same size as before.  It is stable. He was very happy with the results, although I must admit, I was a bit disappointed. I was hoping for a little shrinkage, but, the doctor was very encouraging. He said it is a very good sign that the tumor at least is the same size, and has not grown. He too, was thrilled at the results of the hearing test. I will go for another MRI in 6 months, and will keep everyone informed of the results.

(Jul 2000) I had my 1 1/2 year MRI. Dr. David Andrews, my doctor and "hero", is thrilled with the results. Looks like the tumor is pretty much dead, and I will not be needing another MRI for 1 year. My hearing in my AN ear is 92%, and I have suffered NO side effects at all. Since my tumor is so small (1 cm), it will probably show no necrosis (black) in the center.

I thank God every day that I opted for FSR radiation over surgery. I urge ALL newly diagnosed patients to please get more than one opinion, and don't listen to the doctor who says " Surgery is the only treatment for AN's".  That is total BULL... There are too many myths attached to radiation, and most of them, if not all, are just that -- myths!... I believe that very soon, doctors will tell their patients "Radiation is the BEST treatment for AN's"

(Jul 2001) Had my yearly MRI today, and it was good news again. My 1 cm tumor is exactly the same size as last year; no change at all. In other words, it's dead as a doornail. My hearing is also unchanged; 92% in the AN ear. I now do not have to go back for another MRI for 2 years. Thank God. Remember this, all you newly diagosed patients out there; consider ALL options available to you before deciding on a treatment. It may be the most important decision of your life.

(August 2003) It's now been 4 1/2 years since my FSR treatment. I am still doing great. My hearing, according to my hearing test 2 weeks ago, has gotten better, and my MRI from July shows a dead tumor. Dr. Andrews is thrilled with my results; so much so, that he calls me his "Poster Child" for FSR. I kind of like that title. FSR has been a God send for me, and I thank the Lord every day for guiding me to Dr. Andrews. My next MRI and hearing test will be in 2 years, so I will update the Archive again in 2005. Good luck to all newly diagnosed patients.

Robin Moyer <robin.moyer AT verizon.net> 

     

To Robin's entry in the Patient Directory

Last Edited: Wednesday, November 19, 2003