Meeting the Experts Part 2 and setting the date...

It seems the word is around that what keeps blogs interesting are pictures. I was going to draw a few, but I really haven't progressed very far from the tulips and trees I drew as a child. So instead since I keep on writing about my tumor and its spatial relationship, here's an illustration provided by Northwestern University in a recent publication:

I know, you are probably asking 'what the heck is all of that stuff up there?' Well not being a brain surgeon I will do my best. In short, the brain is eventually to the right; the rest of the ear's mechanisms are to the left. In my case, the neuroma is resting directly on the auditory nerve (which is the 8th cranial nerve). This nerve includes both the cochlear nerve (this carries auditory impulses to the brain stem) and the vestibular nerve (this transmits the impulses from the inner ear compartments that control our balance). Resting very snuggly above it is my facial nerve (this is the 7th cranial nerve) which controls the muscles that move the face and control the tear and salivary glands - it also carries the taste sensation from the front of the tongue. (Gee, maybe now I might be able to try Curry and not care what it tastes like - that's a sly bit of humor for those who have ever attempted to get me into an Indian restaurant!).

These nerves travel through the internal auditory canal. Hence, students, my Intracanalicular Acoustic Schwannoma. As the tumor grows over time it applies pressure and can enlarge the canal. That's what I am beginning to experience according to my MRI. To make this brief, it is the Schwann cells (which form the sheath around the vestibular portion of the 8th nerve) that overproduce themselves and turn into the benign tumor that temporarily is nestled in my head.

Okay group, our Neurological and Otolaryngological lesson is over for now. Let's get back to the experts. After our appointment with Dr. Golfinos, our next stop was down and across the hall to Dr. J. Thomas Roland's office. Dr. Roland is the Director of Otology and Neurotology and Co-Director of the Cochlear Implant Center at NYU. We were very fortunate to get this appointment when we did as Dr. Roland was leaving the following day for about a week for a conference in Eastern Europe. When we entered his waiting room we were face to face with a space that was literally wall to wall people - little people (babies, silly), adult people, elderly people (not that the elderly are not adults) representing about as many cultures as there were patients in the waiting room. We have never encountered a support staff that was more good natured, accommodating, cooperative and clearly happy to be working where they are. Dr. Roland's appointment coordinator, patient intake coordinator and remittance coordinator sat behind the smallest work space I have seen (oh, did I mention that those three jobs were all handled by the same person?) ever. I must say that my first impression was we're going to be here a long, long time and there cannot be any way I am going to be given any quality face time with Dr. Roland. But I said to myself that the experience with Dr. Golfinos had been so great, and that one out of two wasn't all that bad.

Well, the first sign that this was an unusually run office was the offer made to us that if we wanted to go down to the aforementioned lobby coffee bar (remember - chocolate chip cookies to die for?), they would call us on my cell phone when they were ready for us. Tell me when you had that offered to you the last time you were waiting for a doctor. Well we hung out for about a half an hour, got the call and delivered ourselves back at Dr. Roland's office - which, by the way, still had most if not all of the same patients still waiting. We were taken to an examining room and I think that it is safe to say that while we were waiting, there was this ongoing internal dialogue taking place in my head (yes, I can hear my own internal dialogue) that this can't possibly go well. He's going to feel pressured to get through all of these late afternoon appointments and our experience was going to be very perfunctory, at best. Boy was I ever wrong.

Dr. Roland came in and at once he made Eileen and I completely at ease. Our time with him was as if we were the only patient he was going to be seeing that afternoon. He too dropped the DVD of my MRI into his computer and began his analysis. He provided us with an even more in depth tour of my brain stem region, pointing out the now very obvious differences between the left and right sides of the affected region. He was thorough, kind and compassionate. He also was appreciative of our gathered knowledge and we spoke at length about the options between the Retrosigmoid and Middle Cranial Fossa Approaches - the risks associated with both, the advantages of either and the biggy for me, the odds of being able to retain my residual hearing.

We spoke at length regarding the fact that my reduced level of hearing created more difficult odds in retaining my hearing. He indicated that he was leaning towards the Middle Cranial Fossa approach but also indicated that he would be conferring with Dr. Golfinos to discuss both options. We agreed that the surgery would take place in June but their joint surgical scheduling person would have to juggle a few things to make it work. By the conclusion of our visit we both had this incredibly secure feeling that my head and its contents were going to be in the absolute best of hands and that as a team these two were indeed enormously formidable in talent, knowledge, kindness and experience.

It's hard to say that we left the hospital being happy, but certainly contentment was near at hand. The prospects of the surgery now being an absolute reality became very, very real. It's one thing to read and research this stuff. It's something else to start this blog enterprise to keep the therapeutic value of writing about my feelings, look for the light side, and create a dialogue with family, friends and other AN patients. But to know that you are getting that much closer to very talented people opening your head is a whole other layer of the stratosphere. I think that stratosphere is an apt description because when all is said and done this is still an out of body experience. Other people get tumors - I am not supposed to (I have that written in my lifetime warranty they gave my parents at the hospital after I was born).

But the reality is I do have a brain tumor and I want it out desperately. I want to continue on with my life as it was before this all became real. I want to continue to share my life with the love of my life, Eileen. And I want to watch all of our children continue to mature, grow as individuals, have families of their own and continue to make us as proud of them then as they make us proud now. I want to keep on doing the things I try to do for our greater community and continue to contribute productively in my business practice in which I have the great privilege of working with an amazing amalgam of personalities and talents.

See...you get me started....

So we have the date - it's Monday, June 8th. Presuming all goes well, I will be in the hospital for 4 or 5 days and then home for at least 4 or 5 weeks but possibly longer. Frankly that all depends on how much I work through the fatigue I have been told to expect, gaining control of my balance and hopefully the full recovery of any facial paralysis (or droopiness depending on how you want to characterize it). I look at it this way. I love all four seasons in New York, but if I were down for the count during ski season I probably would not be a very happy camper. So I guess I will have to force myself to sit by the pool and just recuperate and contemplate my navel.

The blog will probably go quiet for a bit now unless the mood strikes me. I will promise to keep you all posted on what happens post surgery so keep checking in. Oh, if anyone comes across any doo rags that go with a pinstripe suit, send me the info.

See you around the campus.