It is my responsibility to share my story as others shared with me in my time of need. It is my hope that readers will add something of value to their knowledge base and that they will also share their AN experiences with future generations of AN patients.
I. My diagnosis and research
I just turned 60 and work at Colorado State University as a department director responsible for campus information technology. I am very active, own and ride horses and have no physical problems. I plan to work several more years and it is important that I retain and continue to enjoy a high quality of life.
I became aware of a slight balance problem in the spring of 1999 - I would list to the left when walking. I also had enough hearing loss in my left ear that I thought my work phone had gone bad. But replacing the phone didn't improve my ability to hear out of my left ear. When the problems persisted, I saw my doctor who performed the usual neurological exam and found no obvious problem. He referred me to an ENT who initially diagnosed me with a dead vestibular (balance) nerve and said it was probably caused by a virus. However, he scheduled me for an MRI that disclosed the 1.7 cm acoustic neuroma (AN) on the left side.
Like most of us, I'd never heard of an AN before, so I spent several hours on the Internet researching them. Nothing magic, I just entered "acoustic neuroma" on a search engine and got several thousand hits, then started reading them one by one.
II. What I learned about AN treatments
In a short time, I learned a bit about ANs, including the three major treatment methods:
1. Surgery for ANs pre-dates 1900 and, until diagnosis methods (CAT scan followed by MRI) became available in the 1960s and after, the tumor had often progressed to the point death was not uncommon, either during or after surgery. Side effects commonly included facial paralysis and other problems. Surgical techniques are rapidly improving greatly reducing the number of patients experiencing negative side effects.
2. Within the past forty years or so, gamma knife became a radiation alternative to surgery. Gamma knife is a radiation method where the patient is hit with a high dosage over a number of hours. This high dosage unfortunately can create the same side effects as surgery - damage to the facial nerve, etc.
Gamma knife has one advantage to surgery - the patient doesn't have the side effects of the hole drilled in the head (a not uncommon problem is spinal fluid drainage and it can lead to meningitus).
3. In the past decade, physicans came up with a different radiation method - one that would break up (fractionate) the large dosage into several smaller dosages. And the total dosage adding up all of the small dosages would still be less than the one large dosage associated with gamma knife. This method would enable healthy tissue to heal between radiation sessions thereby reducing the possibility of damaging the "good" brain cells.
Further, FSR (fractionated sterotactic radiosurgery) is delivered by a machine that moves on an axis where the tumor is always hit by the radiation but tissue around it receives a small amount of radiation. And the beam of radiation can be programmed to a specific "length" where the beam stops and doesn't pass through good cells past the tumor location.
There are experts and laypeople who believe GK offers more accuracy than FSR because the type of radiation "scatters" less. In any event, GK is being offered in some cases through a fractionated dosage and FSR dosages and numbers of treatments range widely so GK/FSR distinctions are becoming blurred. The point is that the prospective patient should not assume that there is one generic treatment method for either FSR or GK. Machines, dosages, time duration between treatments - all of these can vary dependent upon the physician's methodology. You should discuss treatment specifics with your physican to learn exactly their proposed treatment plan for you. Talk to patients who were treated by the physician you are considering.
A world-wide known cancer researcher told me one should always find radiosurgery specialists who perform thousands of these treatments, not someone who does a few per week.
I discovered two doctors widely considered as FSR leaders - Dr Lederman at Staten Island Univ Hospital-New York City and Dr Williams at Johns Hopkins Univ Hospital-Baltimore. The current count of FSR treatments for ANs at Staten Island Univ Hospital is around 250 but they have used FSR for other diseases many times; I think I've read that they've performed 10,000 FSR treatments.
As the technology is expanded into more medical centers, the list of capable providers is increasing. As many patients have learned, insurance companies, particularly HMOs, are reluctant to pay for FSR treatment anywhere and any treatment out of the HMO area so it is important for FSR technology to expand allowing all patients to make treatment decisions without insurance constraints.
I quickly discovered in my research an individual from South Africa who had received FSR treatment from Dr. Lederman. His story was intriguing since he experienced no problems during or after treatment and his tumor growth was arrested. I contrasted his story with the many negative stories associated with surgery and gamma knife and decided to further explore FSR.
III. My FSR treatment
I sent my MRI and hearing test to Dr. Lederman at SIUH in late August and received treatment in late October. The treatment is non-invasive - the only puncture was the IV for the contrast dye for the cat-scan. I've had no problems during and since treatment. I was experiencing bad headaches before treatment and, sometime during the treatment week, the headaches left and have not returned.
Day one (Monday) - consultation with Dr. Lederman followed by a fitting of the head device - it's a halo that is calibrated by creating a mold of one's upper teeth using "play-dough" type stuff. Then the mold is fitted to the halo and each time you put it on for radiation, it's in the same relative position on your head. Next step is a cat-scan. Late that same day, I put the halo back on and received my first FSR treatment. Takes about 15 minutes of which most of the time is fitting and recalibrating the halo. You feel nothing and walk out feeling like doing anything you wish.
Day three and five (Wednesday and Friday) - FSR treatment - again takes about 15 minutes. No pain, no fuss, no problem.
Day eight (Monday) - fourth and last treatment. Smaller tumors (less than 2.0 cm) receive four treatments of 500 rads each (total of 2000 rads) and larger tumors receive five treatments of 400 rads each (total of 2000 rads). Note - I've recently heard that Dr. Lederman now believes that the lower dosage every third day for a total of five treatments improves hearing preservation rates.
Day nine (Tuesday) - flew home, and went to work that night to catch up on a project and back to work full time the next day.
After the treatment, I immediately returned to work full time - no fatigue, no pain, no side effects.
IV. My advice to AN patients
I believe that one should be treated when the tumor is smaller than 2.0 cm if possible. The larger the tumor, the more likely one will have pre-treatment side effects and those side effects are usually not reversed by treatment of any kind.
Watchful waiting or denial can work for a while but one cannot ignore this problem forever. The good news is that it is benign so it won't metastize like a cancer cell. The bad news is it will probably continue to grow in a small confined space and push brain tissue out of its way. Eventually, it can cause severe problems and possibly even death. In some cases, the specific location of even a small tumor can be dangerous since it may be close to the brain stem. [Editor's note: since ANs grow on the vestibular nerve out of the ear canal, small ones cannot be close to the brain stem... however, they can completely destroy the hearing, see this story] It is apparent that tumor location can be a prime factor in the urgency of treatment; even more than tumor size.
The ANArchive web site includes patient stories about dealing with insurance difficulties including actual letters written to HMOs. Luckily, my insurance (Blue Cross/Blue Shield) accepted FSR as a legitimate treatment and stated they would cover my treatment costs anywhere in the world (travel expenses not covered). I stayed on Staten Island at a bed/breakfast. Anyone contemplating treatment at Staten Island Univ Hospital should inquire about hospital owned housing adjacent to the hospital; it's about 1/3 the cost of other housing in the area.
A 3-month followup hearing test and MRI in late January showed no hearing loss since last summer and no tumor growth. Since my goal was to arrest tumor growth without introducing negative side effects, I am pleased with my treatment so far. If you wish to have further discussion about AN issues, please contact me at your convenience.
Don Hesser <hesser AT colostate.edu>
970.472.1874 home, 970.491.5491 work
CAVEAT: This narrative covers my Acoustic Neuroma experience only and is not an endorsement of any specific treatment. I can only relate what happened to me when I researched alternatives and selected FSR as the best option for me. So far, my choice has not created negative side effects but it's still early in the game. Other AN patients should conduct extensive research about the disease and ALL treatment alternatives in order to make informed decisions.
Please read my story with the understanding that, as most AN patients, I am not technically knowledgeable about medical terminology or techniques. I've tried to avoid technical statements about treatments and have sometimes simply passed on statements from others without comment since I am not qualified to judge or recommend. I've related my experience as I lived it but I may have inadvertently introduced technical errors into the text. I apologize for any misstatements or errors you may find.©
Back to Don Hesser's entry in the AN Patient Directory
Last Edited: Wednesday, October 30, 2002