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Tony’s Acoustic Neuroma

It’s now over a year since I had FSR with the CyberKnife, and I’m very pleased with the results. My last MRI showed that the AN is dying, and has shrunk a little bit. My last hearing test shows that my hearing is basically unchanged from the level it was at before I was treated with the CyberKnife.

I’m not eager to have any reason to need Radiosurgery again, but if I ever do, I will make sure I am treated with the CyberKnife. No fuss, no pain, major gain!

I was diagnosed in April of 2000 with a 2.7 cm x 2.2 cm x 1.6 cm Acoustic Neuroma (AN) on my right side, but I had already suspected that I had an AN before that, so it wasn’t as big a shock as it could have been.

In 1991 I complained to my doctor that I was having problems hearing in noisy environments, along with tinnitus. I belong to a large HMO, so it’s sometimes difficult to get appointments for special tests in a short time. It took several months to get scheduled for a hearing test. The Audiologist told me that my hearing was within normal range. She couldn’t tell me why I had trouble hearing in noisy environments. She said a hearing aid wouldn’t be of any use to me so I simply found ways to cope, and ignored the problem.

Over the years I had more and more trouble hearing when I was in noisy environments and I was really uncomfortable in crowded and visually confusing places (like shopping malls), so I stayed away from them. I also had a few episodes of loss of balance and getting dizzy, which I just chalked up to getting old problems.

My first real indication that something was very wrong came in May of 1999 during one of my business trips to Japan. I woke up one morning and felt like my right ear was plugged, and my hearing in that ear had pretty much disappeared. Since I was in a very remote part of Japan, and I was going home in a week, I decided to wait until I got home to have my ear checked. By the time I got home and recovered from jetlag, my hearing had recovered somewhat, but the plugged feeling was still there. I called for an appointment with my doctor, and got one arranged three weeks later. That’s actually pretty fast for my HMO.

My doctor agreed that my hearing was not normal, and scheduled me for a hearing test. My HMO moves slowly, and so the appointment to have my hearing checked was not made immediately. In fact, I didn’t see the Audiologist until March of 2000. I should have raised hell about the delay in getting the appointment, but I’m really busy (I work full time as a software engineer in Silicon Valley, and I also run my own consulting business) so I just lived with it. I noticed that when I was tired the tinnitus was worse. Sometimes I thought I could hear people whispering behind me. In some ways, finding out about the AN was a relief, because it meant that I wasn’t going crazy.

This hearing test was much more through than the first one. After the audiologist was done with all the tests, she came in and told me that I had a loss of hearing in the high frequencies in my right ear, and some loss of speech discrimination. I asked if that meant that I would need a hearing aid, and she said that the test showed that my ear was physically fine, so she was going to recommend that I be scheduled for an MRI exam to check for nerve damage.

I’m intelligent. I’m very analytical. I’m an intuitive problem solver. As I was walking out of the audiologists office, my thought process was something like this: no physical damage to the ear, I’ve got proven hearing loss, there’s possible nerve damage, an MRI is needed. Oh my God, I’ve got a tumor in my brain!

So, my next move was to do some research. When I got home I started to search the web for hearing loss, tinnitus, and nerve damage. By the end of the evening, I was pretty sure that I had an Acoustic Neuroma. I was leaving for another trip to Japan the next week, so I shared my suspicion with my wife. Telling my wife I thought I had a brain tumor just before leaving for two weeks in Japan was not a particularly smart thing to do.

I returned from Japan in early April, and was scheduled to see an ENT to confirm the results of the hearing test, and possibly schedule an MRI (can’t schedule an MRI just on the audiologists say so). He checked my ears, asked a few questions, and checked my balance. He said the MRI appointment would be scheduled in the next two to three weeks. I had been hoping that I could have the test sooner, but he didn’t control the scheduling.

I’d never had an MRI before, so naturally I was curious about the equipment, and how it worked. The techs were nice, but firm. They wouldn’t let me play with their equipment, so I grumpily acquiesced to their request to go into the MRI room and lay down on the table. They said it would be a 3 minute scan, followed by a 6 minute scan, and explained the rules (don’t move your head, don’t talk, don’t yawn, etc.). I don’t suffer from claustrophobia, but it was somewhat uncomfortable in the tube. There isn’t much room to spare for me. My arms brushed the sides as I went in, and I had about an inch and a half clearance between my chest and the top of the tube. After the second scan, they told me to wait while they checked something, then said they needed to do another 5 minute scan. I knew they had found the tumor. After that scan, they just left me in the tube for about 3 minutes while the radiologist came in and looked at it. Then they pulled me out of the tube, injected me with the contrast dye, and ran another series of scans. The radiologist said that he thought he saw two Acoustic Neuromas, and needed the dye to confirm it.

After the scans were done, I asked the tech if they had found two tumors. She said there was only one (great relief). I asked if I could see the scan, so she showed me. I was surprised at the size of the tumor. It looked huge to me.

I was called by the ENT and given an appointment about a week after the MRI. When I got to his office, he showed me the MRI and told me I had an Acoustic Neuroma. Since I already knew that, I just asked him what he knew about treatment options. He said he had very little experience with AN’s, and would send me to the HMO s Neurosurgery group. I was given my MRI to carry, and told an appointment would be made for me. I immediately arranged for copies to be made of my MRI, so I could get outside opinions. My appointment with the Neurosurgeon was 6 weeks away, so that gave me time to decide on the treatment I wanted.

I had already decided that I did not want surgery, for a lot of reasons. I’ve had three major surgeries in my life, and each one has been followed by a life threatening infection. I didn’t want another one. I still have usable hearing in my right ear, and I didn’t want to lose it. I already suffer from cluster migraine headaches, and I didn’t want to chance making them worse. I didn’t want to risk the facial nerve damage that can happen with surgery. Etc., etc., etc. That left me with a fairly simple choice: which of the Radiosurgery options is the best for me?

After doing a lot of research on the Web, I decided that I wanted to have FSR (Fractionated Stereotactic Radiosurgery). I learned that Stanford had switched to using the CyberKnife, which was developed at Stanford by Dr. Adler and had just been FDA approved. I did a lot of looking for information about the CyberKnife, and was impressed by its capabilities. Besides, I’m a techie, and new toys fascinate me. My prime choice was the CyberKnife at Stanford.

I got a good lead for a contact at Stanford by asking one of the contributors on the AN Archive that had had FSR at Stanford. Through the contact, I learned that my HMO would send patients to Stanford, but of course the Neurosurgeon would have to make the recommendation

Now I was faced with the problem of convincing the HMO neurosurgeon to send me to Stanford. It turned out that it wasn’t too bad. He understood my reluctance to have invasive surgery, and agreed that Radiosurgery would be just as effective in treating the tumor, with much less risk to me. So it was settled. I was off to Stanford.

I met with Dr. Steven Chang at Stanford on June 30, 2000. We had about a 1.5 hour appointment during which he talked about radiosurgery, and I asked lots of questions. After our appointment, I told Dr. Chang I was satisfied and would like to have him treat me.

My FSR was scheduled for Wednesday, Thursday, and Friday (7/26 7/28). From the patients perspective there’ s not much to radiosurgery with the CyberKnife. You have to get a mask fitted and a setup CAT scan done about a week before, then just show up on time each day, get on the CyberKnife table, and lie very still for about an hour.

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