My personal 'AN story' is fairly simple. I'm now 63 years old and have always enjoyed good health. No heart problems, back trouble or any of the usual maladies that often affect middle-aged (and older) folks. Although I don't smoke or drink, I didn't really exercise much and I never made a big effort to eat 'healthy'. O.K., I was 20 pounds overweight. Other than that, I simply enjoyed the benefit of 'good genes'. Little did I know what was lurking just inside my skull. (bring up loud, dramatic music).
I slowly - but steadily - lost the hearing in my left ear between the years of 1998 to 2000. I mistakenly assumed it was a result of exposure to loud music in my youth and, as I was then nearing 60 years old, probably an 'aging thing'. My primary physician, when I informed him of my one-sided deafness during a routine physical in '03 - referred me to an ENT physician. I decided not to follow up as I (again, mistakenly) assumed that he would just tell me that I was deaf in my left ear...which I already knew. It never occurred to me that the cause
of my one-sided deafness could be a symptom of a tumor
, nor did my doctor suggest this possibility. I had no other AN-related symptoms, such as dizziness or imbalance problems. All my routine tests (EKG, blood work) came back 'normal' and didn't set off any alarms for my PCP. We were both satisfied that my lifelong good health was continuing, despite the annoying one-sided deafness....which I adjusted to and then, decided to simply ignore as everything else seemed to be fine.
In late 2005, I began having intermittent sharp, stabbing pains around my left temple. Very annoying. Eventually, my sense of taste, my appetite and my equilibrium were all negatively affected. Due to my diminished sense of taste, I cut way back on my eating and lost over 30 pounds in six months. I simply ignored all these symptoms for awhile. I finally
told my wife about my problems (she suspected something
was wrong by my slow but steady weight loss and lack of appetite) and 'we' (O.K., 'she'
) made an appointment with my primary care physician. He patiently listened to me recite all my symptoms and said that I might have a 'thyroid problem'
. O.K. Let's find out. Blood tests done the same day quickly ruled out that possibility. Thinking I might have a 'sinus problem' my doctor then scheduled an MRI (with contrast) - which showed a 4.5 cm tumor on my left (deaf) side as plain as day. That evening, I received a (rare) personal phone call fom my physician to give me the news. He recommended surgery as soon as feasible and explained that my tumor was too large for radiation treatment. He recommended a local neurosurgeon. I saw him but was totally unimpressed. Thus began a 4-week blur of doctor-office visits, neurosurgeon consultations, seemingly endless blood tests, various (expensive) 'scans' - and the feeling that my life was now out of my control and I was just a passenger on a very strange journey that I didn't want to take, as if I had - somehow - gotten on the 'wrong train'.
After a few consultations with various neurosurgeons that underwhelmed us with their 'expertise', my wife and I finally picked a mature, well-respected local neurosurgeon, Dr. Issac Goodrich
. Dr. Goodrich , a courtly gentleman, is originally from Georgia, and retains a trace of his southern accent. Most importantly, he's a real AN pro. Dr. Goodrich has decades
of experience removing AN tumors (and high praise from my wife's spinal surgeon). To perform the necessary surgery. Dr, Goodrich decided on the suboccipital Retrosigmoid surgical approach
, which made sense to me. Dr. Goodrich scheduled a June 1 (2006) operation date, then pushed it back to May 24th, out of a sense of urgency, based on the size and apparent recent growth of the tumor. To complicate things, following a routine pre-op CAT-scan, a 'mass' was found on my liver, indicating cancer. Even though no one used the ' C-word', the implications were clear. My wife and I received a lot of sad looks from receptionists and nurses that we dealt with at that time. However, I refused to get depressed - or to panic - because we didn't really know what was going on with this mysterious 'dark spot' on my liver. Why 'buy' trouble? My wife was (naturally) worried but remained resolute - and hopeful, as did I. To my surgeon's obvious regret - but at his request - the original May 24th surgery was canceled and a liver biopsy was immediately scheduled. That happened on May 25th, 2006 (no fun) and, thank you, God, the 'mass' was found to be a hemangioma
. A benign
tumor - a blood clot, really) and definitely not
cancer. It was basically harmless. Whew!
Following a family celebration where we all figuratively let out our collective breath, Dr. Goodrich called and happily shared our relief, then re-scheduled my AN removal surgery for Wednesday, June 7th, 2006. At this point, as much as I still dreaded the idea of surgery and hospitalization, I was becoming anxious to 'get it over with'. I know Dr. Goodrich was, too. Postponements,, cancer scares and re-scheduling will have that effect on surgeons - as well as their patients.
I entered the operating room at 7 a.m on Wednesday, June 7th, 2006. Less than nine hours later, the AN was mostly gone. Well, 50% of it. My surgeon intends to use radiation treatment to remove the rest. Informationally, I was 4 days in the ICU (at over $5,000. per day. + meds (thank goodness for Blue Cross!) and a day on the 'regular' floor (@ $3,000. per day + meds) before being discharged from the hospital within 5 days following my AN surgery. At this point, all is well. My strength is coming back, I'm working hard on my balance and getting back to 'normal' . My surgeon said that my recovery is in the 'top 5% range'
and he seems amazed by that, but nonetheless, pleased. So am I.
I had prepared as best I could - with much prayer, of course (I'm a lifelong Christian) and by reading everything I could about what was going to happen. This site was a big help in that regard. I made it clear to my surgeon that while I had full confidence in him
- negative post-op complications were my real - and biggest fear. He respected that and brought in a special physician (from out-of-town) to the surgical team to monitor all the facial/cranial nerves to avoid unnecessary trauma and post-op complications. At this point, some 2+ weeks out, it seems to have worked. I have no major post-op complications. The occasional and relatively minor 'dry eye' if I'm tired (a few eyedrops or a lot of 'forced' blinking on my part clear it right up) and a bit of an effort to regain my balance functions (getting better every day) are about all I have to deal with right now. Well, that - and a perfectly good haircut that was ruined by the necessary shaved spots (for the surgery). Fortunately, I have a full head of healthy hair that I expect to grow back rapidly, covering the temporary 'bald' spots.
I'm extremely grateful for an excellent surgeon and the good genes that are allowing me to recuperate quickly and fully. I know that eventually, except for the one-sided deafness, I will
recover from this. Some folks that experience strokes, etc, can't do that. The damage is permanent. AN damage is reversible - and
we can recover. I'm lucky. In a sense, we all are.
I really admire all the folks before me who have gone through this 'AN experience' and kept their sense of proportion and humor. You are an example for all of us. Me? I just want my life back.
: Radiation treatment was moved back to the second week of September, 2006 on the advice of the radiation oncologist who wants the site of the surgery (internally) to heal completely before radiating it. I agree. My 'fractionalized' radiation treatments will begin the week of September 11th and last for 6 weeks (at most). I have been assured by my physicians (nuerosurgeon and oncology radiation) that some fatigue may occur as a result of the radiation - but not much else. I trust this prediction will prove correct.
I'm doing great at this point, 12 + weeks post-op. I drive everywhere and am doing just about everything I did before the surgery - or before I even knew I had an 'Acoustic Neuroma'. My balance is quite good - if not yet 100%. I'm getting there - and I'm way better than I was a few weeks ago. Besides, everyone I know tells me how 'good' I look. I love it!
I also consider myself very blessed and I truly appreciate the information this board has provided me. I hope my 'AN story' encourages others. Although we are all different, some of us can have 'good outcomes' following AN surgery, even when we're 'older'. Keep your spirits up and don't you dare to allow this challenge to defeat you. I didn't - and look where I am now!