Hi, Princess:
I'm glad that you've found the ANA site and this forum, where you are free to vent, inquire and advise, as you see fit, knowing that - in one way or another - we're all AN patients (or related to one) with different backgrounds and experiences, but, due to our shared AN situation, we're wholly empathetic.
I can totally understand your frustration at becoming a patient. I am not a health care provider but have enjoyed good health all of my life. I fully expected to sail into old age as my father did, living into my '90's with few medical problems. Wrong! When my symptoms became too obvious to ignore (sound familiar?) my loving wife insisted I be examined by our family doctor. He sent me for an MRI and the 'rest is history', as they say. I was immediately embarked on a what seemed to be a frantic round of surgeon consultations, hospital visits for various tests and phone calls to Blue Cross. After choosing a very experienced, compassionate, mature neurosurgeon who wanted to operate within 10 days and had a real sense of urgency about my 'condition', I had to admit that my large AN (4.5 cm) was definitely life-threatening and that this was really happening to
me. I managed to remain calm but hated the unnatural feeling (to me, anyway) of near-helplessness as I turned over driving and other routine tasks to my wife, who was willing to help as needed and was a great source of comfort and support to me during this period of my life.
On the way to my surgery date, a pre-op CT scan 'discovered' a 'mass' on my liver. The doctors assumed it was cancer (no one ever said this to me but the oncologist helpfully told my wife that if it
was cancer, I might have less than 6 months to live). Not surprisingly, my scheduled AN surgery was immediately canceled. A next-day biopsy revealed that the 'mass' was a hemangioma. Because I was asymptomatic and in otherwise excellent health, the oncologist handling my case said no treatment was necessary and cleared me for my AN surgery. My wife and I breathed a sigh of relief and prepared for the surgery, which took place about two weeks later.
The retrosigmoid surgery went well (9 hours) and I came through it rather well, too. No facial paralysis or any serious complications. I was in ICU for 4 days, a regular room for half a day and discharged on my 5th day following the surgery. On the way home, my wife, adult son and I 'celebrated' with pancakes at a favorite diner near the hospital. My recovery went well, too. I had a few VNA visits from a physical therapist to help me with my balance but she observed that I had improved so much within 2 weeks that her services were no longer necessary. My neurosurgeon gave me permission to drive again -
hallelujah - two weeks post-op. I went for scheduled FSR treatments (26 over 5 weeks) from September through part of October. Again, no complications, just tedium.
I steadily improved over the months and now, at a bit over one year post-op, I feel that I'm pretty much back to 'normal. I'm deaf in my left ear (you adjust faster than you might imagine) but my balance is quite good and what few lingering symptoms I still have are minor and easily dealt with. On my last MRI scan (April 30th) my remaining tumor showed definite signs of necrosis. Life is good.
I've related all this to you in an effort to demonstrate that being diagnosed with an acoustic neuroma tumor is life-altering, yes, but that it isn't always all doom-and-gloom. You will have some losses (some hearing, likely) and, if hospitalized, be subjected to the usual indignities of any patient but it passes and you can return to a full life, as many of the folks posting on this forum will attest.
We wish you all the best and stand ready to help in whatever way we can, even if that just means listening to (reading, actually) your concerns, frustrations and possible fears.
Jim
