Since many of you reading this are really scared, looking for information, and trying to make the best decision, let me start with the bottom line, for me:
If I had $5 million or so of spare change, I'd give a lot of it to House. They didn't just save my life...they preserved it. For those of you now facing all the decisions that are part of the AN process, this should be your goal: A Great Outcome. Let nothing, not distance, not cost, not even insurance companies, get in your way. Particularly if you have a large tumor, in my opinion 2 cm or larger, House is the best place to go. There is more individual and institutional experience in this very specialized form of brain surgery at House than there is anywnere else in the US.[/b]
Now, my particulars. I had almost no symptoms until I felt strange and dizzy going up and down a ladder. My Connecticutl Otologist (who ironically had been a fellow at House 30 years ago) sent me for an MRI to "eliminate" the possibility of a tumor, which I instantly knew I had. Thinking that the absence of symptoms correlated with the size of the tumor (it doesn't, one of the dozens of weird, counterintuitive things about this condition), within two days I was ready to go down to Johns Hopkins or the Cleveland Clinic for radiosurgery. Then the MRI scans came back.
The AN was huge, about 4.5 cm. Radiosurgery was out, he explained, because the tumor was so large that there was no room for swelling and that the pressure on my brain stem, already significant, would increase to the point where I could die. My head would explode, sort of. Thus began my quest for the best possible surgical outcome, starting locally, expanding to Yale nearby, Mass. General in Boston, Sloane Kettering and Mt. Sinai in NYC, and House in Los Angeles. All but House were relatively close, and all but Yale were out of network, according to my insurance company. But that's another story.
Discussions with doctors at these institutions revealed significant differences. Their personalities were a factor, their surgical approaches varied, and with the exception of House their prognoses were guarded and far less than I was looking for. Some estimated 14-16 hours under anesthesia, and a couple of the surgeons told me in no uncertain terms they would have to sever the facial nerve. One said I'd likely need two surgeries. I sent my scans to House, and the next day Drs. Rick Friedman and Bill Hitselberger called me. Basically, they said, I needed to have this thing out quickly, felt strongly that they could do it without severing the facial nerve, and expressed confidence that my outcome would be quite good. Surgery would take five to six hours, an entire floor of St. Vincent's hospital across the street for the Clinic was devoted to their surgical patients, and the medical staff - not just the surgeons -Ã‚Â had seen every complication and was accustomed to handling any situation.
This was what I had been looking for. From that point on, I never doubted that they'd do the best job possible for me.
Getting there, however, was not easy. Over the next two months, I submitted three formal appeals to my insurance company to allow me to go out of network to House. They were rejected, this after extensive medical research and documented statistics. The people at House were outstanding, sending letters on my behalf and agreeing to be reimbursed by my insurance comapny as if it were a California HMO. But the key was my wife, who out of frustration called the Medical Director of the insurance company and told him that she thought I was going to die. While that wasn't the case, it (or my attorney, cc'd on everyting) got his attention and I got my approval.
The good new was that I had only four days to actually worry about the surgery.
My experience as a patient was outstanding. I believe that my absolute faith in Friedman and Hitselberger helped enormously. Not only did I never once think I might actually die, but I had no doubt that I would be able to resume my life with very few residual effects of the surgery, aside from losing the hearing on my right side. That, I figured, was a small price to pay.
Because the tumor was so large (turned out to be over 5 cm.) and the surgery so long (6 hours, which for House is a long procedure), I was in ICU for three days, then in a room for another five days. I was released, but developed a very small CSF leak that only required that the incision be repacked and reclosed, which Hitselberger thought from the outset might have to be done. He did it the next morning, and a few days later I was released.
Here's something you'll like to hear: There was very little pain, at least relative to what I expected. The nurses were fabulous, follow up care was amazing, and single rooms the norm. The food was decent, but I recommend the first floor cafeteria or some local restaurants for take out. Ask the doctors.
When I left Calfornia, Rick Friedman told me that mine was the largest AN they had removed to that point where the outcome resulted in such a high degree of facial mobility, lack of headaches, almost no balance issues, and no eye problems. Hitselberger wanted to take me to a LA Dodgers game toward the end of my stay, but they were out of town!
The flight home was uneventful, and though I was much more tired than usual for the next three months or so, things were remarkably normal from the beginning. I started driving again two weeks after my return, and a month later attended my first business meeting in New York. That nobody there suspected anything unusual about me was just what the patient ordered!
It's now a little over five years since the surgery, and I can still tell you what I had for breakfast the day after I was released. As if it were yesterday, I remember my first post-hospital bath, a seemingly endles walk down VeniceÃ‚Â beach, certain things we bought in LA, and my wheelchair ride through LAX.
What are my deficits? There is some residual numbness in part of the right side of my face, sort of like permanent mild novocaine. I can't kayak (takes an amazing amount of coordination and balance), my basketball career is over (then again, at 50 yrs. old it was anyway), and I do shy away from concerts and really loud clubs, since I only have one ear left.
Which brings me to the biggest problem I have....I miss hearing in stereo. Following conversations in noisy restaurants is difficult, and strategic seating in such places is a must. Again, a small price to pay for what might have been a far less satisfactory outcome.
Please, feel free to contact me with any questions or concerns. I have been in touch with lots of people over the past five years, including others on this forum. When I get an AN message on my machine, it's the first one I respond to. Same with emails. Talk to you soon.
Update 4/23/05: Recent MRI showed no tumor regrowth. Fourth year in a row. The radiologist who reads my scans can't get over the quality of the work. He calls the surgery a work of art every time he transmits the results to my internist.