I was diagnosed in April of 2000, 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. It was either a 2 cm or a 2.7 cm Acoustic Neuroma on my right side, depending on who does the measuring. Some doctors measure only the part of the tumor that protrudes into the brain, others include the portion that is in the canal. Take your choice.

Prelude.

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), and 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.)

The Diagnosis.

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. Remember my saying that I’m intelligent? Well, that’s true, but believe me, intelligent people can do some really dumb things; 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. My MRI appointment was scheduled two weeks after I saw the ENT.

I’ve 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 didn’t ask for copies of the MRI at the time, which was a big mistake. Always ask for copies. You can get them later, but it’s harder.

The Decision.

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 ANs, 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. (Background: In addition to AN, I have Reiter's Syndrome (weird and nasty form of arthritis), hiatal hernia, stomach ulcers, sleep apnea, migraine headaches, acid reflux, and a few other minor problems. I had a large growth removed from my throat 34 years ago, and a large growth removed from my lower left sinus 12 years ago. The sinus growth is back, and will have to be removed again.)

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 would be willing to go for FSR at Johns Hopkins, Staten Island, or Stanford. I contacted Dr. Williams at Johns Hopkins and Dr. Lederman at Staten Island University Hospital for information and advice. Dr. Lederman sent me a very informative video. Dr. Williams was kind enough to review my MRI and tell me that I would be able to have FSR.

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. I also 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. Prime choice was now the CyberKnife at Stanford.

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.

CyberKnife at Stanford.

The CyberKnife was developed at Stanford, and is marketed by Accuray. Here is a link to the Accuray website:

http://www.accuray.com/CyberKnife/CyberKnife_Specifications/cyberknife_specifications.html

Dr. Adler took a leave from Stanford to help Accuray market the CyberKnife, so I met with Dr. Steven Chang on June 30. Dr. Chang assisted Dr. Adler during the development and testing of the CyberKnife, so he is very familiar with it. We had about a 1.5 hour appointment during which he talked about radiosurgery, and I asked lots of questions. They divide the total dose into 3 fractions because they have found that it gives them the best results. I will get a total dosage of 21 gray, 7 per fraction. The number of ‘shots’ per fraction will not be known until after the preliminary planning is complete.

After our appointment, I told Dr. Chang I was satisfied and would like to have him treat me. He set up an appointment for me with the Radiation Oncologist on his team (Dr. Heidi Roberts) for the next week. I met with Dr. Roberts on July 6, and once again we discussed the procedure, what I could expect and what not to expect. Basically, she agreed with Dr. Chang and said I might be able to retain the current levels of my hearing and balance, because they were much better than the size of the tumor indicated they ought to be.

The next step was setting up the preliminary CT Scan and mask fitting, followed by the procedure date. Dr. Roberts told me that I might have to wait 6 – 8 weeks for time on the CyberKnife, because it’s in almost continuous use.

The Preparation.

On July 20, I got a big surprise. Stanford called at about 11 AM and asked me to come over immediately for my pre treatment CT Scan and mask fitting. There had been some schedule changes, and they could work me in much sooner than anticipated. I was at Stanford at 11:45. I needed to have my mask fitted, and get a CT Scan. I had an IV needle inserted to give me Iodine during the CT Scan. I’m very allergic to seafood, so they first filled me up with anti-histamine and steroids, just in case. Then I walked over to the building where the CyberKnife is located to get my mask fitted.

The mask is basically just used to keep you from moving too much. The fitting is done in about 10 minutes. You lay on the CyberKnife table while a mold is taken of the back of your head. Then, the mask is fitted. The mask is a blue plastic mesh that is heated to become pliable and then is stretched over your face. It feels like a warm towel. It’s pressed down firmly over all your facial contours, with just your nose sticking out. Unlike some other masks I’ve heard of, there isn’t any requirement for dental positioning.  [Editor: facial masks and dental molds are two leading competing technologies.  Their job is to ensure accurate repositioning of the head for the multiple treatment sessions.]

Following the mask fitting, I had a CT Scan so the surgery could be planned properly. I got to wear the mask during the CT Scan. The mask was not really uncomfortable. In fact, I fell asleep during the CT Scan.

The treatment.

My FSR was scheduled for the following Wednesday, Thursday, and Friday (7/26 – 7/28). My wife took the time off of work, and my son and daughter-in-law came to stay with us. They were much more nervous than I was. I’ve noticed that it’s much easier to have the problem than to be someone supporting the person with the problem. In any case, I was very glad that they were there to support me.

The actual CyberKnife procedure is somewhat anti-climactic. All you have to do is lie very quietly on the table. There are lots of noises all around, but your main function is to be the target, and be still. Having said that, here’s what happened:

On the first day we got a very comprehensive tour of the whole system. I really enjoyed the tour. I found out that my treatment plan would follow 3 different paths each day, with a total of 118 (it may have been 138) ‘shots’ done on each day. Each shot is aimed to make sure it doesn’t cross any other shot, except at the tumor. The CyberKnife can move independently to adjust its position for X, Y, Z, Roll, Pitch, and Yaw, so it can basically adjust for just about any position movements. It has two X-Ray machines mounted in the ceiling, which are used to verify the position of your skull just prior to a shot. If the skull isn’t where it’s supposed to be, the system will compute how the CyberKnife has to move to get the correct angle for the shot and move the CyberKnife head to the correct position. If the adjustment is too great, the system won’t shoot. A techie's dream!

After the tour, I got the treatment. I got up on the table, put my head into the mold (which is fitted into a slot on the table), and put on the mask, which is then secured to the table. You have the ability to move a little, but it’s better if you don’t.

The table is adjusted to get you lined up with the positioning X-Ray machines, you get covered by a warm blanket, and you get to listen to the clicks and whirrs of the system for the next hour or so. I was watching the arm moving while it was in front of me, and could see it adjusting for slight unintentional movements on my part (like swallowing). It’s really fascinating!

The next two days were repeats of the first day, except that we didn’t get a tour. 

After each treatment, I was given Compazine (anti-nausea) and Decadron (steroid to prevent swelling) and was sent home.

Post Treatment.

The biggest problem I had immediately after the treatments was that I was really wired by the Decadron, so I couldn’t sleep. It also upset my stomach. Since I was so wired , I didn’t get much sleep, so I took the week off after the treatment. I was pretty tired for the first few days, but as the week went on, I got my energy back.

The only problem during the week was a really bad headache on Thursday, which I treated with my usual migraine killer (Vicodin and Compazine). I also took some Prednisone as a precaution (I use Prednisone to control arthritic inflammation).

I had some balance problems right after the treatments, but it’s much improved (balance almost back to pre-AN symptom state). I had an increase in tinnitus right after the treatments, but it’s back to the pre treatment level now. I’ve had a few interesting twitches in my left leg and foot, and a few sharp pains in my right ear, but that’s it. I think my hearing is getting better, because I was able to use a phone in my right ear and actually carry on a conversation a few days ago (a very subjective conclusion).

TonyBoxer <tboxer AT pacbell.net>
California
January 2001

Updates

(2/01) This is an update with with my 6 month results. My hearing has not changed since my FSR, and most amazingly, my AN has shrunk over 19% (based on volume). Per Dr. Chang (my neruosurgeon), at initial treatment, it measured 2.7 x 2.2 x 1.6 cm. On my 6 month MRI, it measures 2.4 x 2.0 x 1.6 cm. There are signs of necrosis in the center of the AN.

(12/01) My latest MRI (July 2001) showed additional shrinkage and tumor death, and my hearing test showed my hearing was unchanged.

©

Last Edited: Friday, November 01, 2002