Meeting the Experts

Welcome back faithful readers and followers. I was considering turning this into the Great American Novel when I remembered this is non-fiction. I am not really sure I am ready to take on Doris Kearns Goodwin or David McCulloch - two of my fave historical authors, so I am glad to announce that this Blog will maintain its otherwise defined mid-brow factual content and somewhat cock-eyed attempt at humor.

While I am still pursuing the Doo Rag options, we did leave off where I wanted to share with you how truly fortunate I have been to have several serendipitous events intersect on my behalf. Shortly after I began to share the news of my IAS's existence, I learned that Josh Goldwyn, son of my first cousin Michael Goldwyn, is a PhD candidate, working as a graduate research assistant to Dr. Jay Rubinstein at the University of Washington Medical Center in Seattle. I actually knew that Josh was at the university and was doing medical research and probably even had heard that the research included acoustic neuroma and cochlear implant studies. But to be frank, why would I ever had paid careful attention to that small detail? Josh, who for all of the right reasons does pay attention to the details of acoustic neuromas, having learned of my situation from his Dad promptly contacted me and reminded me of his work. He also graciously offered to speak with Dr. Rubinstein and inquire about the names of the doctors I was to see on the 7th of May.

This is where you begin to wonder that even if you have a hard time with buying into the concept that there is higher order of things in this world and others, sometimes 'kismet' (I actually was once in that show - but once again, I digress) happens - or as they (who are 'they', anyway?) say in Yiddish, 'bersheit' (defined as destiny or fate) shows its hand just when you may doubt that such things exist. Next thing I know it turns out that Seattle based Dr. Rubinstein is good friends with New York based Dr. Roland - so much so that they occasionally conduct research together. Furthermore, Dr. Rubinstein, offered to read my MRI disc and the next thing I know I am on the phone with him the following afternoon. What he shared with me was the confirmation of what I already knew, but also explained further about the exact location of my tumor, what the good news was (not growing towards my brain) and what the not so good news was (it is growing towards my Cochlear and is nearly right up against it) - thereby continuing to create further deterioration of my hearing. We spoke about what the surgical options were and what he expected would be discussed with me the following day when I met at NYU with Drs. Roland and Golfinos, namely that the Retrosigmoid or Middle Cranial Fossa Aproaches were in all probability the options I would be offered. And lastly he said to me that if he were in New York, and if he had an AN, the doctor he would go to immediately was Dr. Roland. I say if Tom Roland is good enought for Dr. Rubinstein, that's good enough for me.

We go to meet the team, have a cup of coffee in the lobby, and start to get comfortable with the surroundings at NYU Langone Medical Center

As it turns out May 7th came faster than I would have originally expected. And while I have continued to try to be pretty together about the process so far, as I rode in the cab from my midtown office to meet Eileen at the hospital on First Avenue and 31st Street the reality of the signficance of what I was about to hear face to face and be prepared to make very important decisions about my health and my future began to engulf me. That was one heck of a long cab ride - and it didn't help any that the cab driver seemed to have had a hard time deciphering between Third Avenue and First Avenue. This was just not a good time to test my tolerance quotient.

After meeting up with Eileen in the main lobby of the medical center we proceeded to Dr. John Golfinos' office on the 8th floor. [Note to self: really nice coffee bar and cookie/muffin stand in the loby. Note to others: outrageous chocolate chip cookies!] Dr. Golfinos, Associate Professor and Chairman of the Department of Neurosurgery and Associate Professor of Otolaryngology (how are you doing with saying that three times fast? Personally, I think that if you can say "Otolaryngology" three times fast they should let you into medical school), has to be one of the most engaging, upbeat and clearly hugely talented doctors we have ever met. He put us both at ease and created an open environment that not only taught us more about my tumor from a Neurosurgeon's perspective, but encouraged us to ask as many questions as we needed to. There was never a moment that we felt intimidated or that any question was wasting his time. For the first time we watched the MRI unfold on his computer screen, revealing 'slice' after 'slice' of the innerds of my skull. And to all of you skeptics out there, there indeed is a brain in there. And that was when we were introduced to my very own personal Intracanalicular Acoustic Schwannoma.

Dr. Golfinos is obviously a very astute and bright guy. You ask how would I know that? Simple - he made a point of noting that I was extraordinarily prepared for our meeting and that I had saved him at least 30 minutes of describing my condition and possible treatments. (Gee, I hope that wasn't doctor speak for here's another smarty pants patient who thinks they know it all!) In all seriousness, though, Dr. Golfinos was enormously approachable, compassionate, empathetic, and extraordinarily knowledgable and truly made Eileen and I as comfortable as possible as we discussed my surgical alternatives. It was a good discussion, and I was truly pleased that I had done the research on ANs beforehand, because honestly, the situation is so stress producing as it is, I do not think either of us would have retained all of the information that was presented to us for more than an hour or two. What truly impressed me was at no time did Dr. Golfinos presume that we had come to decide that surgery was the path we would take. But he did give me the opening that literally had been drumming in my thoughts since I was first diagnosed. He said...".you know, there are just some people who just want the tumor out...period". Well to say that hit home is an understatement. That was all I had been focusing on from day one - just get out whatever hadn't arrived with the original standard equipment when I arrived on this planet. From there it became a lot easier. We did, of course, discuss the benefits and risks for each of the surgical approaches, with the primary focus being that I was adamant that after my own overall safety, attempting to save that portion of my remaining hearing was really important to me.

For those of you who may not know me well, music has always been an incredibly important part of my life. I was brought up by parents who loved all aspects of music, theater and performance arts. That ranged from my father listening to "Symphony Hall" on WQXR radio every night and my mother being so eclectic in her tastes that included classical music, opera and Dick Clark's "American Bandstand". It's where my love for the stage, performance and music came from as an adolescent and young adult. And it's what I found caused the greatest devestation to my emotional acceptance of this illness. I do often think about Beethoven, however, and how much amazing music he produced while suffering total deafness. But then again, he never heard that music fully orchestrated and performed - although historians do believe that he did hear it in his head.

Back to Dr.Golfinos...We arrived at the decision point that either the Middle Fossa Approach or the Retrosigmoid Approach were the winners. Both, as we have discussed in earlier postings, will provide the opportunity to remove the tumor and give me a 50/50 chance of saving the hearing I still have in my left ear. The differences focus on the angle of exposure to get to the tumor while limiting both the contact with the facial nerve and minimize the needed retraction of my brain during the surgery. We left that final decision to the conference he and Dr. Roland would have after we had met with Dr. Roland later that afternoon.

Next posting...we meet Dr. Roland and set the date...