AN Journey and Lessons Learned
Like so many others with an Acoustic Neuroma, my journey started years before I knew it. In 1991 I remember sitting in my living room listening to music through headphones and thinking how the right channel didn’t sound OK. I assumed that the stereo was broken and I’d just have to replace it someday. Several months later I woke up one morning to the chirping of some birds. When my head rolled over on the left side, I noticed the chirping went away, but came back when the left ear was uncovered. This was the first moment that I realized that it was me, not the stereo.
I spent some time thinking about it that day and came up with what I thought was the answer. About a year earlier I had taken a plane on a business trip when I had a head cold and when I arrived at my destination the pressure in my ears was tremendous and I couldn’t hear well for several hours. Well, my conclusion was that I must have damaged my hearing then. Other than being mad at myself for having done something dumb in retrospect, I had my answer and there was nothing to do but move on.
Lesson 1 - Always have a significant change checked out by a physician instead of self diagnosing.
Three years later in 1994, the hearing didn’t seem any different but there was always a “plugged up” feeling. I complained about this during a physical exam and the doctor at my HMO scheduled me for my first audiogram since grade school. This confirmed that I had some unilateral high frequency hearing loss in the right ear. The ear looked fine and there was no apparent damage.
Looking for reasons I got a variety of answers ranging from too much rock music, maybe a firecracker when I was young, to “just one of those things”. What about the “plugged” feeling? Could something be in my head causing it? I was told that it was probably just a sensation relative to the loss of hearing. I wasn’t comfortable with the answers, but I still assumed it must have been the bad plane flight.
Lesson 2 – Always take charge of your own health care. I believe this is particularly true of HMO’s such as Kaiser where the focus is on finding the highest percentage answer, not the one that fits you best. If you don’t feel good about the diagnosis, get a second opinion.
The next seven years were fairly uneventful with regular physical exams and occasional comments about my right side hearing, but with no real heightened urgency on my part. In 2001, during my check up I mentioned it felt like my hearing had dropped again and the doctor scheduled another audiogram. It confirmed that the right ear had deteriorated in the high frequency range. This time, however, the audiologist was more proactive and scheduled an appointment with an ENT who took several tests and scheduled an MRI. Two weeks after my MRI, I met with the ENT and had the bomb dropped on me that I had an Acoustic Neuroma.
I’m sure my reaction was no different than anyone else . Fear, panic, “why me” thoughts raced through my head all at once. My wife, Nancy, was a great support as she immediately helped me search the internet in an effort to better understand this new problem in my life. We found a lot of tremendously helpful web sites and slowly began to get a handle on what an AN involved and what the options were in treating it. While you have to be careful about the validity of information that is on the internet, at a minimum it helps formulate questions to ask doctors.
Lesson 3: Take advantage of all the resources available to understand what an Acoustic Neuroma is and what your options are. One of the best web sites I found was the AN Archive ( www.ANarchive.org).
My next steps were to see neurosurgeons at Kaiser who immediately suggested surgery and dismissed any discussion of radiosurgery. They immediately proposed the Translab approach which would involve destroying all of my hearing in the right ear. After further discussion they decided that the sub occipital approach would be OK to give me some chance at retaining hearing. I also inquired at to how many AN surgeries they had done and was told around 400 in 10 years. They were also unconcerned if I waited another 6 months before deciding. On the way home I had reached a decision that I wasn’t comfortable with their approach or experience level and decided that I wanted to seek out real experts to deal with my situation. Fortunately, my employer’s health care coverage gave me an option to move into a PPO.
Lesson 4 : Acoustic neuromas are very slow growing. In all probability, they have been there for several years before they are diagnosed. Take the time to really understand what your treatment options are and who the best physician is. Whether you choose radiosurgery or surgery , look for the best of class and most experienced doctor you can find.
Living in the SF Bay Area, I am very fortunate to have to two world class medical centers in UCSF and Stanford. I was convinced that I would find a more suitable neurosurgeon in one of those places. My next stop was to see Dr. Jackler at UCSF [Ed: now at Stanford] who had published many articles on AN’s and had performed somewhere around a 1000 AN surgeries. He also dismissed the option of radiosurgery for the common reasons and recommended surgery via the sub occipital approach. He indicated that while I only had a 10% chance of retaining any hearing , there was an 85% chance of no facial nerve damage and a 95% chance of total tumor removal. I was much more comfortable being in Dr. Jackler’s hands than the neurosurgeons at Kaiser , but was still depressed over the risk levels associated with the 3 primary objectives of the surgery.
I then moved on to Stanford where I had an appointment with Dr. Schuer who was the chief of neurosurgery for a final consult and intended to make a final surgical decision. This is where my AN journey made a big curve. Dr. Schuer listened to my overview of previous consults and intended direction and then asked why I was not considering radiosurgery. This stopped me in my tracks and I proceeded to outline what I had been told about the risks:
1) Long term results were not available
2) The need to take MRI’s the rest of your life since the AN was still there
3) Concern over radiation induced malignancy
4) More difficult surgery if the radiosurgery didn’t work
Dr. Schuer suggested that I had not received very good information on these issues and proceeded to bring in Dr. Chang who was both a neurosurgeon and a primary radiosurgeon with the Cyberknife program. They responded to the issues very effectively by pointing out the following:
1) Radiosurgery with the Gamma Knife (GK) had been used for over 30 years with extremely high rates of tumor control. In my subsequent research it appeared that radiosurgery was more effective given the amount of tumor re-growth following surgery which mostly reflected the number of times only a partial removal is done.
2) There is no scientific evidence of radiation induced cancer and in fact the rates are statistically the same as with surgery.
3) The protocol for MRI follow up at Stanford is the same for both surgery and Cyberknife treatment.
4) There is very little evidence that a later surgery is more difficult in the hands of a good surgeon. I asked what their experience was and they indicated there hadn’t been a failure yet to create that situation. I liked that answer a lot better anyway!!
This new information gave me a lot more to think about, which was particularly difficult given I had resigned myself to undergoing surgery. I was left in the position that every AN patient eventually finds themselves. The final lessons of my journey reflect how I reached my own final decision.
Lesson 5: Neither treatment option guarantees a perfect outcome or zero risk. Both microsurgery and radiosurgery have improved dramatically in the last 10 years, but AN treatment is still a significant procedure involving cranial nerves and proximity to the brain.
Lesson 6: Given lesson 5, I felt the best course was to choose the procedure with the best odds. The 3 primary goals were tumor control / removal, facial nerve preservation, and hearing preservation. I researched several web sites and felt comfortable that the odds significantly favored FSR over radiosurgery.
Confidence in your physicians is always a critical factor in making a final decision. A difficulty most AN patients have is the mixed messages from surgeons favoring surgery and radiosurgeons biased the other way. My final decision was made easier by the fact that Dr. Schuer, a surgeon, and Dr. Chang, who did both FSR and surgery, both recommended the Cyberknife. In light of their ability to do surgery, I put a lot of weight on the fact that they felt my best option was radiosurgery. Dr. Chang also put me in touch with several patients who had been treated with the Cyberknife previously and the ability to talk with them was invaluable to me.
The decision having been made, I mentally prepared myself for the treatment. Since Stanford was having a new generation Cyberknife installed, I had to wait several months for my treatment. I drove Nancy crazy during that period as I kept second guessing my choice up until the week before I was scheduled. The treatment itself was done on an outpatient basis over 3 consecutive days before Thanksgiving 2001.
Candidly, the procedure was anticlimactic compared to the process of getting there. Each day I laid on the table with my head secured by the custom mask and listened to the Cyberknife moving around me like a big electronic dinosaur. While I took the week off from work and took it easy those three days, the rest of my life was uninterrupted. I went back to work the next week and resumed by workout schedule the day after treatments. It couldn’t have been easier.
However, it was not without some post treatment reactions and problems. About 2 weeks after treatment I started to have 30-60 second “flashes” of vertigo several times a week. They were more of an irritation than a problem, but then at 6 weeks I had a serious reaction with vertigo and double vision lasting 3-4 hours. Undoubtedly, this was due to some nerve irritation from the radiation which was not unusual but was very disconcerting. However, it cleared up and things have been uneventful since.
So what are the results from my choice of FSR to date? This is being written just short of 18 months after treatment and there have been 2 audiograms and MRI’s taken since. The results have been very positive! At six months, the audiogram showed that my hearing was unchanged and the MRI showed that the AN was darkening and was slightly smaller in size. After 1 year, the audiogram actually showed some improvement in speech recognition and in nerve function. The latter was significant as it suggested that the radiation dosage had been tolerated well by the nerve. The MRI showed the AN was essentially the same size, but had turned white again, indicating scarring. Dr. Chang indicated that my AN was following the classic progressions of an AN going through necrosis. I look forward to another positive report in the next month and then the appointments will be set at longer intervals.
I hope that by chronicling some of my Acoustic Neuroma journey, it will be helpful to those newly diagnosed and looking for the right choice. There are many things that are learned during this process and I have tried to highlight some of those that were most significant for me. In my case, I am very thankful for having had the opportunity to have been treated by the wonderful physicians at Stanford and that a non invasive technology like the Cyberknife was available. When I first started down this path I was resigned to having a very risky surgical procedure and certainly a loss of hearing and a possibility of other deficits. Instead, I never saw an Operating room and my quality of life is unchanged. I couldn’t be happier with how things have worked out to date.
<Calpedaler AT mindspring.com>.
(May 2003) I had my 18 month check up. All signs continued to be positive. The MRI showed the AN as all white with some black spotting indicating continued necrosis. The size was essentially unchanged from the 1 year scan, but is about 20% smaller in volume than the size prior to treatment. The hearing test was unchanged from the 1 year exam which was improved slightly from the pre-treatment levels. Dr. Chang was particularly pleased with this result as less than 5% of FSR patients see hearing improvement, the general expectation being that it would stay the same or slightly increase. This is certainly a far better scenario than surgery offered where deafness was virtually assured as an outcome. My balance and facial nerve function continued to be unaffected. I will be checked again in six months but the evidence is very solid now than the AN is dead and that there is no negative reaction to the radiation by healthy tissue. It would be hard to imagine a surgery outcome being anywhere this good.
To Mark's entry in Patient Directory
Last Edited: Thursday, November 20, 2003