On hammers and nails
(italics added by editor)
I was 42 years old when I was diagnosed with a vestibular schwannoma by a radiologist from an MRI done at Scripps Hospital in La Jolla, CA. The only surprise, in retrospect, is the speed of the diagnosis.
1. The GP
In the summer of 1997 I felt fullness in my left ear. This didn't concern me too much. I swim outdoors year around and get an ear infection about every other year, usually at the beginning of the summer when myriad's of little kids have swim lessons. My GP verified that I seemed to have fluid behind my ear drum and put me on some medicine to drain it and prevent infection. No big deal. Everything seemed to clear up in a couple of weeks and return to normal. I felt a little unease about my hearing on that side but the loss, if any, was more of a shadow than anything substantive.
Two to three months later and 3000 miles from home, on vacation, I awoke with the same feeling of fullness complimented by vertigo. Luckily, the vertigo lasted only one day (and what a day it was) but the fullness continued. I returned to my GP since the vertigo gave me some concern and the fullness wasn't clearing up as readily as the time before. My GP failed to find fluid behind my ear this time (was it really there the first time?), looked grave, said it was beyond his expertise, and sent me to an ENT.
2. The ENT
Let me interject that since I was dealing with an HMO there was a minimum of two weeks between each step while approvals were sought and granted. The ENT tested my balance and my hearing and told me they were off. Since my hearing was below 50% and a flip turn in the pool caused all kinds of unpleasant sensations neither diagnoses was a surprise. One tip off was that they had to crank the volume up so loud in my bad ear that I could hear it in my good ear over the masking noise. They also had to crank the volume so high that I felt the speakers vibrating against my head telling me I should be hearing something even when I couldn't.
The doctor laid out the most likely possibilities. The first was Menieres Disease (MM) and the second was a tumor. He seemed to favor MM and, after reading everything I could on it, I did too. The vertigo and feeling of fullness matched the more common symptoms. An MRI was proscribed to rule out a tumor and was interesting if only because Scripps Hospital uses a portable unit in a trailer. They prep you in radiology, walk you outside (in the rain), and up some temporary steps made from 2x8's to get to the machine.
The results of the MRI were a shock mostly because I'd already decided on the wrong diagnosis. The tumor was relatively small, 1 cm by 6 mm. I was told that conventional surgery was the only real option. Nothing would be gained by waiting since, given my age, I'd be unlikely die before the tumor did additional damage.
3. An ear specialist
I was also out of the ENT's area of expertise and he sent me to an ear specialist. Again, may balance and hearing were tested. I think my balance had improved but my hearing seemed to have degraded even more. Either that or the technician had a mushy mouth when he talked. I was able to guess about 20% of his words.
This doctor did explain that while the norm with an AN is gradual hearing loss over several years a small percentage have sudden, dramatic losses such as I did. The theory is that the tumor squeezes off the internal auditory artery causing almost everything downstream to die from lack of oxygen and nourishment. Things aren't completely dead, I hear a faint buzz from a loud telephone dial tone, because a little blood seeps into the area from some smaller blood vessels.
Again surgery was the only option presented as viable and a translab approach was agreed to. After all, I had no viable hearing to save. This doctor worked with a team approach. Apparently he started things and once he'd gotten in so far turned the operation over to a neurosurgeon. Off to the surgeon for a pre-surgery consult.
4. The neurosurgeon
The neurosurgeon told me what to expect from the surgery. However, he also happened to also be the director of the San Diego Gamma Knife Center. I'd even seen his picture on their web page when I'd been researching treatment options. He was the first medical professional to tell me that the GK was a real alternative. He also didn't have a vested interest. He did the procedure either way and said as much.
All during this time I had been searching for information on AN's or vestibular schwannoma's and found no one could even agree on what they were called. I certainly never found any "reputable" source that advocated anything but cutting the tumor out. I was reminded throughout this of seeing little kids with a wooden hammer. If all you have is a hammer then everything turns into a nail. Conventional surgeons all have their surgery hammer (actually a knife but the analogy makes no sense if you leave out the hammer). My tumor was the nail. All they could see and talk about was the best way to hit the nail even when a screw driver might be more appropriate.
5. Gamma Knife radiosurgery
Once I decided on gamma knife surgery, a visit to the San Diego Gamma Knife Center was arranged as sort of a walk through so there'd be no surprises. I met and talked with all those who would be involved in the procedure and looked at all the equipment. The gamma knife unit looked enough like a football helmet, albeit 20 times larger, that they'd decorated it with a San Diego Charger's lightning bolt. The description I fell back on for what they actually would attach to my head was a kitchen colander worn upside-down.
Surgery day is pretty well lost. I checked into the gamma knife center on a Thursday about 6:30 am, had an IV attached and was given some stuff (excuse the technical jargon) which I remember being told didn't put me to sleep but pretty well shut down my memory. I don't even remember the frame being attached to my head but the bolt holes and the pictures my wife so kindly took tell me it happened. I even missed my first, and hopefully only, ride in an ambulance since that's how I traveled from the center to get a targeting MRI. There were two sessions with the gamma knife to target different ends of the tumor and I remember being conscious enough for the second one that I realized that I could move my head up and down, pivoting on where the head frame was hooked up to the machine. I was concerned that I'd advertently position myself wrong and fry one of the more useful areas of my head. I realized later, and verified with the doctor, that the tumor was the center of the pivot point and all I could do with all my movement was present it at a slightly different angle.
Procedure at the San Diego Gamma Knife Center is to check you in to Scripps La Jolla Hospital for an overnight stay. My wife still laughs at my arguments to walk off the drugs and just go home. The only outward signs that anything had been done were two Band-Aids over the bolt holes in my forehead and the IV line still attached to my wrist. Take that out and I was ready to leave. I'd showered, shaved, and packed my toothbrush to leave by the time they got around to telling me I could shower the next morning.
6. The aftermath
I did develop some swelling in my forehead. I think that was mostly because one of the bolts had gone through some a scar from a previous accident and the tissue didn't compress easily. I could have gone to work that Friday, if needed, but my wife wouldn't let me consider it. I did sing in a choir festival the following day but I think the forehead swelling gave me a brooding look that didn't fit with the Christmas theme of the festival.
My next contact with the doctor was a follow-up MRI done at the six month mark. I had the MRI and went to hear from the doctor a week later. I probably spent more time on the elevator than in his office. The verdict was "no growth" and I penciled in a visit a year later. Much better than all the post-operative hassles I contemplated from conventional microsurgery. I can even do a flip turn in the pool now without heading straight for the bottom.
Sherman Watkins <SWatkins AT 24hourfit.com>
Last Edited: Friday, November 01, 2002