My Acoustic
Neuroma
FIVE weeks
before this writing (February 2013) I had cranial surgery which
removed an Acoustic Neuroma tumor (AN) from my right inner ear. I am
writing this personal account for others who have suddenly found
themselves with this problem. I am indebted to those trail blazers
who have posted their AN journeys for those of us searching for
answers and meaning, and I feel obliged to add some of my experience
for those that follow.
Everyone's
AN journey has commonalities but also so many differences it seems
important mention the symptoms seldom noted. I experienced the
typical hearing loss and the 'wonky headed' dizzies but the
tremendous head pressure the tumor produced added new unexplained
symptoms including nightmarish tinnitus, uncharacteristic intense
emotion, terrifying nightmares, and hallucinations to name several of
the worst. My hope is that those who might be experiencing the same
conditions would find a bit of solace in that someone before had
suffered similar manifestations and ended up OK (hoping to amend the
just 'OK' part of the story when my 'wonky' head and intense
headaches subside). None of us deserved any of this and if I was
pressed to give it meaning, it has taught me quite a bit about myself
and the value of friends, family and health. Battling a tumor has
given perspective on the piddly issues I face each day; they seem
much smaller than before.
After
the diagnosis you think back and can see the signs were there, signs
that seem obvious now but were dismissed as passing physical glitches
or signs of maybe getting older. The dizzy spells at night on trips
to the bathroom were easily passed off as rising too fast. Then there
were the lightheaded bouts that actually felt kind of good, but
became disconcerting when they became more constant. That's when I
knew that I needed medical answers. When I contacted my doctor and
detailed my symptoms he was little concerned and diagnosed me to have
Benign Positional Vertigo and that it should clear on its own. During
the next several weeks instead of conditions dissipating they got
progressively worse. The dizzies began to be mixed with some spinning
sensations, and soon after if I did anything but lay still my head
would feel like it was in a pressure cooker at full steam. Even now,
it is hard to describe that pressure.. It was a world of pain
combined with intense and disabling mental anguish. The pressure was
accompanied by intense tinnitus. Years before the AN tumor diagnosis
I had some hearing loss so a bit of tinnitus seemed to come with that
hereditary package, but it suddenly became intense. It was so loud,
and it changed, morphing to the hideous. There were high pitched
crickets chirping at an incredible cadence then a shrill oscillating
sound that would stab into my consciousness like the psycho shower
scene, it was so terrible, so constant and terrifyingly pathological.
The pressure affected my psyche triggering uncharacteristic emotional
bouts. I knew that I couldn't have handled any of my family getting
hurt or having problems of their own. As it was, my wife was worried
and wasn't sleeping well. My 14-year-old daughter was scared and
missed her old dad who was replaced by one who slept on the couch
most of the time. I was a mess with my only solace, my only respite
from the physical pain was lying down with my head stabilized,
buried into my pillow. When I finally slept, I often had terrifying
nightmares. My doctor finally paid attention and sent me for an
audiology test where they found my right-side hearing had fallen off
the chart so badly I was no longer able to understand a spoken word.
Then to the ear, nose, and throat doctor for an MRI image. I wobbled
sideways and sometimes stumbled along the hospital corridors. MRI
revealed the tumor, and that was the first time I had ever heard of a
Vestibular Schwannoma, more commonly called an Acoustic Neuroma (AN).
This devilish growth attached to my vestibular nerve squeezing it
along with my acoustic nerve, thereby inflicting pain, deadening my
hearing and throwing my stability out of whack. My AN was relatively
small as they go, a mere quarter by half an inch- some get to be golf
ball size before any symptoms appear. The ear, nose and throat doctor
set me straight. I had a benign, slow growing, relatively small tumor
that for the time being wasn't a threat to my life. She sent me to
another hospital within the Kaiser HMO network that had expertise in
brain tumors. She was worried that I had drove to my appointment,
mentioning that because of my condition my license could be revoked.
Even though I knew that I probably shouldn't drive, I did. I felt
that if I kept my head still and concentrated intensely, focusing on
the road in front of me I had a good chance of avoiding problems.
Distraction could have been disastrous. Despite my precautions I
caused a fender bender in a parking lot as my coffee spilled and when
I instinctively flinched, vertigo took all my attention and I hit the
car in front of me, vindicating her warning.
The
process of dealing with an HMO takes time. Appointments with
specialists are sometimes three to four weeks out so I had to wait
for over three weeks to meet with three specialists in Redwood City
about 75 miles from our house. Upon meeting the 3 specialists it was
decided (more by them than me, rational thought no longer a strong
trait of mine), that I should 'watch and wait' since at that time the
tumor wasn't life threatening. Further, surgery was so invasive
creating its own set of potential problems. It was possible that the
tumor might simply stop growing or develop so slow that it wouldn't
be a problem in my lifetime. The ENT wanted to try a treatment called
a chemical labrinthectomy (CL), with the goal of ridding me of my
dizziness by injecting an antibiotic called Gentimicin into my
affected inner ear. CL' kills the vestibular system, rendering the
tiny hair like receptors in the cochlea useless and unable to send
any signal to the brain. This is presumably preferable to a
conflicted signal. Always, when I felt up to it I was plowing through
the internet garnering as much information as I could about ANs. I
couldn't find any articles that pointed to CL treatment for an
acoustic neuroma; apparently it was only used as a drastic final step
in a disease of the middle ear called Ménière's.
I
agreed to the CL treatment and the
process
would take another month waiting for the first appointment plus three
weekly injections. Before the CL treatment could begin, my doctor
needed a benchmark measurement of my vestibular system so testing was
ordered with again the typically long waiting period. When my
appointment finally rolled around, my condition had deteriorated to
such a degree, the corridors and lights so disabled me that my
audiologist had to help me into the exam room. She quickly saw the
need to skip the coordination part of the test, and performed some
sensory tests on me and found that my right side vestibular system
had indeed been compromised.
Then
the first CL treatment. I wasn't warned that the procedure might be
painful. Poking a hole in the eardrum and inserting a tube to keep
the hole open for a month coupled with the first injection jolted me
quickly past my pain threshold. As I winced the doctor admonished me
to stay still. Also surfers ear (exostoses, bony bumps that grow from
a body's response to years of cold water immersion) was causing
access problems and made the process difficult for him which
translated to pain for me. These treatments did ease my debilitating
head pressure, calm my tinnitus to a tolerable level and stabilized
my emotions. I was decidedly better, left with only the dizziness
that any head movement brought on . As the remnants of my vestibular
system died during the CL treatment I hallucinated that the horizon
was bouncing.
Finally
the treatment was complete but I was still dizzy which made me tired
all the time. My palate also started acting up: everything I ate was
tinged with a rancid oily taste. My wife urged me to send my
records, including MRI disk, to the House Ear Clinic in Los Angeles
for an evaluation, AN's being one of their specialties. The doctors
were kind enough to call and tell me I should have the devilish
bugger (not their words) taken out. Since I was in the Kaiser system
they recommended two veteran neurosurgeons at Kaiser San Diego. My
mind was made up, surgery date was scheduled for a month later.
My
wife and I flew down to San Diego on a Monday and we checked into a
hotel near the hospital. I had my pre-op the next day (Tuesday) and
on Wednesday I walked (zigzagged!) a mile to the hospital at 6a.m.
for my surgery. The translabrynthine operative approach had been
pre-decided since my hearing was already so damaged. An incision
would arc around my ear and a hole drilled into my skull behind it
giving access through the semicircular canal to my cranial nerves so
the tumor could be cut away. Some fat would be harvested from my
belly and inserted into that area to fill the void that was left. The
surgery would render me deaf in my right ear. It would take, along
with the tumor, the vestibular amd acoustic nerve but would be the
safest approach as far as my brain and facial nerve were concerned.
When I woke up in the ICU with 26 staples holding my right ear onto
my head. I noticed right away that the right side of my face was
working fine and I could blink and shut my eye, meaning my doctors
had successfully preserved my facial nerve (apparently my brain had
come through OK also!).
I
was released on Saturday and we flew home on Sunday. I spent the few
weeks on the couch medicated to relieve the pain and headaches that
would persist but then ease up on those meds and went back to work
which entails running a business. Now I have the dizzy 'wonky head'
to about the same degree the dizzies were after the CL treatment. My
brain is void of any input from my right vestibular system and is
only receiving stability signals from my left inner ear and my eyes.
Week four was the same but without so much pain medication. As I
eased up on the meds I started waking up with incredible headaches.
I'm now on week five and am improving but because of my bobbly wonky
head, I still get really tired in the afternoon. Also, I still have
night headaches but they are decreasing in intensity and my surgeon
said I'm following a normal progression after cranial surgery. My
right ear that was apparently pulled down for surgical access is
numb.
My
ENT saw that I was ordering more pain meds and told me to listen to
my body, and ease up on my daily activity to wean myself off the
Hydrocodone. After months of inactivity it is hard for this
workaholic to ease up. I figure the more my head has to work at being
vertical and adjusting to movement the faster I'll get back to
normal. My right side tinnitus is softly buzzing as I write and is
very tolerable. I have a disconcerting pressure in my head when I
lift anything even slightly heavy. My neurosurgeon says he has heard
of this with other AN surgical approaches but not the Translab
approach. Since my surgical wounds have healed as well as the hole
in my ear drum and it's OK to have my head submerged, I have resumed
surfing. Paddling is intense and very strange with my wonky head but
I managed to get a few waves on my knees. I tried to stand the first
day out but flailing and launching sideways I knew that wasn't going
to happen for awhile. Tonight as I write I hope I haven't overdone
things. The rancid, oily taste in my mouth has been replaced by a
very salty, metalically sensation. That spurred a call to my doctor
because I know that cranial fluid tastes salty and CR leaks can
result from cranial surgery. My doctors weren't concerned.
So
off into the future feeling relieved that the devilish growth has
been excised but at a cost of diminished hearing and being constantly
dizzy. My ENT says that at the one year mark my stability should be
better and by year two my brain should have figured it all out. Some
folks say they never get over the 'wonky headed' feeling that
overtakes periodically. My head is working so hard now trying to be
'normal' that I kind of can't help wonder if I might ever be right
again, but I'm going to do everything possible to get there.
Seven
month update: I am so much better. Still have dizziness, but it is
manageable and tolerable. I am surfing again in the early mornings.
Some days are better than others. There is a brief moment on every
wave when the board speeds down the face and I jump up on reflex mode
only. If I do get to my feet I'm usually good to go! Larger waves
with steep faces will throw my head into dizzy mode for the rest of
the day and any time tumbling in wave turbulence is not good. Again,
I have good days and bad days. I still get tired in the afternoons
but I am able to do so much. Tinnitus is fairly consistent company
but it isn't all that bad and I don't pay attention to it. My ear is
not numb any more but does not feel normal either. I don't seem to be
as sharp mentally as before. Memory might have never been a strong
point of mine but now I sometimes forget things from just a few days
ago. The single-sided deafness is an issue, as my hearing on my
'good' side is not all that great. It is hard for me to locate sound.
Corridors, tight spaces and weird lighting are strangely surreal and
make me wobble. On the whole, my loopy head is tolerable. Walking at
night is a little problematic but I might only look a tad intoxicated
with my sideways gait. I still have an uncomfortable pressure in my
head when I lift anything and this worries me the most (but as I try
to avoid lifting it might just save my back!). A fat graft area (fat
was harvested from my belly and inserted as a filler in the surgery
hole) developed a Seroma which collected fluid and had to be drained
three times. It is an uncomfortable lump sitting under my skin but I
was assured it wouldn't be a medical problem.
Nine
month update: About the same as my seven month report. I still get
tired on many afternoons but nothing that a short nap doesn't remedy.
I have a cold now and my dizzies and fatigue seem to be worse
because of it.
Despite
all, I had to laugh at myself today. Sometimes my dizzies are just plain goofy but I have a
lot to be thankful for.
