Maybe a "doo rag" can go with a pinstripe suit....

There's been a lot going on. I have been on a raging campaign to learn as much about this illness as possible. What I have learned at the least is that I have to take full credit for its establishment and growth. There is no tangible evidence that I can blame this on any of my forebearers. Something else I have to take responsibility for.

How does the line go...'you have to walk a mile in someone else's shoes...' has taken on a whole new meaning for me. I cannot express enough how much it has meant to me that so many dear relatives and friends have reached out to just express their concern for my well-being. You know before you experience one of these events you just do not get how important that communication is. I truly have a whole new perspective and understanding of how a simple act of kindness can become such a significant event for the recipient. So fellow bloggers, reach out and touch someone - you will never be able to estimate how much impact it can have. And...don't presume that the ill person doesn't want to talk about their condition or their issues or their fears. If they don't want to, they'll tell you. But don't ever believe that someone knows your good intentions by being silent or distant. That may be easier for you, but it's not about you - it's about them.

Obviously, I digressed. Sorry - give me a soap box and see what happens - I'll just go on for ever. Back on topic. At the same time that I learned of Dr. Brackmann's existence I put a call into a client of our practice, Dr. Noel Cohen. Noel, recently retired from the NYU Langone Medical Center, was instrumental in the creation of NYU's Cochlear Implant Center. As a significant expert in the field of Otolaryngology, Cochlear Implants, and, as it turns out, Acoustic Neuromas, I could not have been more fortunate to have access to someone of Noel's sature and knowledge. Sometimes it just feels good to know that maybe there is a higher order that puts the various puzzle pieces of your life in order.

Noel, as I expected he would, could not have been more understanding and helpful. He also said something to me that will stick with me for a very long time to come. There are times when as a professional, you realize that not only do you get through to people and gain their trust, but they also understand the subtleties of your personality. Noel said to me that knowing me as he did, being a critical thinker, and how I approach problems and their solutions, expected I would be doing a lot of research to get myself educated as quickly and concisely as possible. Noel also gave me the names of two doctors at NYU - Dr. J. Thomas Roland (Otolaryngology/Otology) and Dr. John Golfinos (Neurosurgery/Neurotology). Drs. Roland and Golfinos work as a team in treating Acoustic Neuroma disease - and as colleagues of Noel fit the bill as significant forces in their respective fields. This no doubt explains why NYU has the stellar reputation it does in this field. Within fifteen minutes of finishing my call with Noel I had made back to back appointments with Drs. Golfinos and Roland for Thursday, May 7th. Being that our conversation was on April 17th, May 7th seemed a lifetime away, but I decided to focus on what should be important to anyone - my family and my work.

The fabulous news that had showed up two days before my diagnosis was that our daughter Lauren's longtime soul mate, Michael, had called Eileen and I to ask for our blessing for him to proceed with proposing marriage to Lauren that coming weekend. We of course gave Michael our blessing and are looking forward to many, many years of sharing wonderful events with he and Lauren. Anytime you want to duel with me about emotional roller coasters, I am pretty sure I'll win. Let's see - first of our three children to get married - benign brain tumor - that covers the range of emotions, n'est-ce pas? So the good news was we had been presented with a fabulous diversion. Of course that didn't stop my voracious appetite for learning about the courses of action that I would soon be discussing with my doctors.

It turns out that doing medical research on the internet can be informative and useful. Who would have thought? I have spent the last several weeks getting an education on ANs. I have read about diagnoses, treatments, side effects, expectations for success, risks, rewards, the two broad methodologies of tumor removal and the individual choices within those methodologies. I have read medical journal submissions by renowned experts in the Ontolaryngology (if you think that's hard to spell - try saying it three times fast!) and Neurosurgical fields seeking to find the voice that would arise and claim, "Eureka - here's the perfect solution - follow me to Valhalla!" Well as it turns out life just is not that easy. After being hooked on "ER" for its full run on TV, one actually buys into the concept that medical remediation is only a commercial away. Turns out life is just not that simple (and no commercials, either).

Decisions, decisions - - Incisions or not??

Here are the basics. There are two broad categories for treatment for ANs (well actually there are three as the option to wait, watch and monitor the patient's tumor growth and continued hearing loss can be a very appropriate route to take depending on age, hearing loss and other considerations) - either non-invasive or invasive surgical approaches. Non-invasive approaches have two options - either Stereotactic Radiosurgery or Gamma Knife (more on those in a moment). Invasive approaches provide three options - Middle Cranial Fossa, Retrosigmoid (Suboccital), and Translabarynthine. (Remember there will be a test at the conclusion of this session!).

Gamma Knife is the common form of radiosurgery. It's administered on a one shot deal of high-dose radiation (no, I do not know if the warranty comes with the promise of glowing in the dark). Radiosurgery is a multiple day or multiple week process which allows for the dosage of radiation to be spread out over that time period. The goal of either of these processes is to shrink the tumor. The tumor is not removed and nearly all of it is zapped by the treatments - however, the stem of the tumor may very well stay intact. Going this route is highly successful in thwarting the tumor's growth, and, where the patient still has all or a significant portion of their hearing in place, these treatments can assure the saving of the hearing. However, research has begun to show that after a period of years, hearing does begin to deteriorate significantly. The patient also winds up with the annual reminder of needing an MRI for the remainder of their lives. Why, you may ask? Aha - that's the rub. You see, there is no guarantee that the tumor could not grow itself back since the stem does not get the radiation treatment)- which can create all sorts of other challenges. Challenges such as the difficulty of surgically removing the irradiated tumor, while very remote, but none the less the vary rare chance of the irradiated benign tumor tissue becoming malignant. Often these approaches are used for diabetic patients, or patients diagnosed who are over age 70.

The surgical choices, as mentioned above, of course present their respective positives and short comings. Let's face it, having some folks (albeit very talented folks) with little tools and a microscope poking around inside your skull is a teeny bit un-nerving. On the other hand, from my perspective having anything related to this tumor hanging around in my head any longer than is absolutely necessary is way too long. The choices regarding the surgical approaches have a lot to do with what type of fashionable scar a folicly challenged 58 year old male is willing to accept as part of their destiny. And for me, always a slave to fashion, the consideration of a crescent shaped incision beyond my ear (going laterally back along the side of my head - that's the retrosigmoid approach) or an inverted question mark incision above my ear and up towards my hair line - [no wise cracks needed here] - that's the middle cranial fossa approach) is a critical part of the decision making. But once again, I digress.

Back on topic...the surgical approach that will eventually be decided upon has much to do with my individual circumstances. I do still have 64% of my hearing in my left ear, so having a consideration of keeping what I have is important. Risk associated with the surgeons noodling around my facial nerve is remote, but none the less important to consider. While certainly not a dillitante when it comes to dining and table manners, having a droopy left side of my face and having my lobster bisque dribble out of the corner of my mouth whilst in the midst of polite company could be considered an issue. Then again, being unable to give that knowing little wink with my left eye for a while would certainly limit those polite conversations where you need to signal a knowing moment where words would just not do. Then again, as a righty, I just tried to wink with my left eye and couldn't do it - so maybe that's not such a big deal after all. Sorry...back on topic...the other piece is the need for some retraction of the dura (that's the lining around the brain) and my brain itself so that the surgeons are able to get to where they need to does create the unpleasant after effect of having my balance mechansim a bit whacked out, which among other things, adds to the needed time to rest and focus on recovery. At this juncture, we are focusing on either the retrosigmoid approach or middle cranial fossa approach. We'll get to more of that at a latter posting, but at the end of the day, we're going to be looking at some decent battle scars on the ole noggin.

SO...the major question is, can a doo rag go with a pin stripe suit? Who knows...could be the beginning of an urban craze. I mean if it works for Hulk Hogan..??