Hi-Ho, Hi-Ho - It's off to the Big City I go...

At long last, I have returned to the office! Life is back to normal and I am back in the swing of things. Well...sort of. But first a bit of nostalgia for all - click here: 'http://www.youtube.com/watch?v=aURThUaRjCc' (Note: RLP check out the security system).

This vestibular/balance disturbance is a beaut, for sure. I was fully expecting that by this juncture the lingering pieces that needed to be sewn up would be. It's that patience thing again and I continue to be humbled by the body's healing process. I continue to learn that there is a process in place and I just need to feed it right, exercise and train it and then let the cell multiplication process do its thing.

As a result of returning to the office, I have had to change my physical therapy routine to once a week. The hours I can get to my therapist, Beth, are a bit limited, especially when commuting to NYC and back is taken into consideration and I just cannot rush myself - when I do the whole balance/throbbing headache/fatigue thing sets in and I know that's my brain telling me to stop pushing. Rail commuting has taught me to become so much more aware of what is going on around me then I have ever made note of before. Let me tell you, the upper level of Grand Central Station is one heck of a bees' nest of activity - the proverbial excess visual stimulation mother ship. When balance and the requirement to think about getting a fix on the horizon is not critical to your stability, that over stimulated environment is another one of those great big city experiences. However, when those criteria are critical to your stability, that tumult of activity is outright unsettling and threatening.

So by necessity and logic my work day for now is going to be somewhat limited. I am commuting after and before the major rush hour time frames which is translating into about a five hour day at the office. I am really working on the issue that starting with this schedule is okay - the years of putting in 10+ hour days is hard to shake and dealing with the emotional component of not really 'working' is truly hard for me. I am part of a vibrant business partnership and my desire to contribute as an equal once again weighs on me. My colleagues have been great about this and there has not been any issue - that still does not mean that my own determination to be a active, vibrant part of what I have missed out on over the last 10 weeks is easy to put aside.

The reception I have received from clients as I have been speaking with them has been very heat warming. The expression of concern and welcoming back has almost been overwhelming. One of our clients, who has been a dedicated rader of the blog, blew me away this week when she thanked me for putting into words in my last blog a series of feelings and emotions she too has been feeling but had not found the words to put it all together. If I ever get these published, EG, you get a dedication for sure.

We had our daughters and their significant others with us last weekend and our daughter Lauren and I had a wonderful talk about my tastebud issues and what she herself had experienced earlier this decade. Lauren was stricken with Bell's Palsy in July of 2000 while she and our other daughter Joanna were in France. The girls had just graduated high school and were traaveling together with the plan that Eileen and I were going to be in France near the end of their trip and the four of us would do Paris for several days together before leaving for home. The details are not as critical (other than our friend and family otolaryngolist, Barry Kent, came to our rescue as we negotiated with the doctors at the American Hospital and had Barry on the phone at the same time) other than the fact that the impact on the facial nerve and tastebuds is very comparable to patients so affected by AN surgery. Lauren is even more beautiful today than she was then (yes, I am partial) and despite the fact that the 'minimal percentage rule' once again kicked in on our family (Lauren was stricken again on the same side with Bell's two years later - that's only supposed to happen in less than 5% of the cases) we shared our experiences of what it is like to experience normal taste on one side of your tongue and mouth and have this constant bitter metallic taste in the other half of your mouth.

To the unaffected this may not seem like too big of a deal, but we're talking even the presence of your own saliva or a sip of water creates the same reaction as a wonderful bottle of St. Emilion. It permeates your daily life and the reality is, compared to most other maladies most folks would ask what the big deal is. I think the best answer I can offer is that it is a constant reminder that all is not right yet, and although I have other things to remind me that I have had this surgery, this one is just (literally and figuratively) in my face (in my mouth) constantly and there is no escaping it - for now.

I think that I am getting over the mourning of the loss of my hearing. I have to otherwise it is going to get in the way of my moving on. I can remember reading a story years ago about someone who had gone to bed as a sighted person and woke up blind. The concept was so beyond my ability to truly appreciate what the writer was trying to evoke from the reader. I probably was way too young to consider vulnerability of that dimension. Well, truthfully, I have a long way to go yet in what I expect to be my life's journey, but I am certainly not too young to now understand the loss of a valuable sensing mechanism literally in a matter of hours. I am looking forward to what the technology of the external implant could do for me and I have decided that unless there is some unforseen reason that prohibits me from having it installed, I will be doing it. In the meantime I am getting to used to noisy restaurants and the cacaphony of sounds that I struggle to process.

I have been neglectful in not previously expressing my undying love and admiration to the one person who has put up with all of this and me - my wife, Eileen. In well over 36 years of marriage, bringing up three fabulous children (and still one very missed dog), caring for ill and elderly parents and careers (and the thrills and chills of my life in corporate America), we have sat by our mutually respective hospital beds after major surgeries and tried to imagine our lives without each other. That just didn't seem like a possible or probable outcome. So even when I decided to give her an extra bonus this time around when I was readmitted to the hospital with leaking cerebral spinal fluid, and she was convinced by others that I was not going to die because of it, she is still here putting up with my yet not being quite the same person I was before. But she is unflappable and continues to be supportive, caring, loving and concerned for my improving health. Yes, there are times that I probably think that she is being a bit too protective - but consider the alternative and that would not be her - and that among many other reasons is why I love her as much as I do. And most days she is still the girl I first met in 7th grade (frightening, isn't it? -not so much - really!). And so to the love of my life I just simply say, I Love You and thank you for all that you do to make my life special.

See you around the campus.....

The Wisdom of Roseanne Roseannadanna Was Right....

For those readers of a certain age, you may remember the very early years of "Saturday Night Live" when the wonderful commedienne Gilda Radner (as news feature character Roseanne Roseannadanna), would turn to Jane Curtin, the news anchor and state assertively, "Well, ya know Jane there's always somethin' ". She then would invoke the wisdom shared by her father: "It's just like my daddy would always say. Every night when he would tuck me into bed, he would say, "Roseanne Roseannadanna, if it's not one thing, it's another."

Perhaps not a deep Proustian thought - but a life's perspective none the less.

So let's start with the understanding that the opening statement is not a foreshadowing of changes in my status and progress. I can report that the Vestibular Rehabilitation Therapy ('VRT') is progressing well as I begin the third week of it this week. The process is all about eye and proprioception development and training to create normalcy in my balance and movement. My therapist says she sees improvement - I continue to feel frustrated by not being able to feel as I did before the surgery.

Just so I make sure that I clarify how much I am grateful about, I know that I am incredibly fortunate that besides for the initial setbacks of contracting pneumonia and the CSF leak, and the curent loss of half of my taste buds (that's related to the facial nerve - and the only facial nerve issue I have had), this has been a recuperation that has gone well. I have no paralysis and suffered no other impact other than the loss of my hearing in my left ear.

I think that the larger issues for me are going to be hard for many to grasp. I do not feel right yet. What does that mean? It means that I fall into a hazy state without much warning other than a lot of visual stimulation taking place. It means that unexpectedly the incision site will begin to throb. It means that, while much further and fewer between, I still get a throbbing headache - especially at night. It means that anyhing that involves the normal fast movement of my head creates a 'horizon moving' event - things like swimming the crawl stroke, crossing the street, walking down the steps, reading and watching TV - you get the idea. I know these things will get better, but no one can commit to how long that will take. It could be two more weeks and it could be several years.

You know when the nature of your illness is not visible it seems to be harder for people to grasp that all is not a-okay. If I were in a cast, if there were still bandages around my head or sutures in my scalp, the visual would set up the expectation. When you outwardly look healthy, it's a whole other dynamic and curiously, the expectations of your stamina, ability to interact and participate in social settings changes completely in the eyes of most people. After all as a society, we are constantly taught that if you are 'dressed' for the part you are ready to perform the role. Well my friends, I am here to tell you that is not the case. My personal challenge is to be honest about how I feel in certain situations and to follow through accordingly. However being of the personality to want to please people incessantly, making decisions based on how I feel is a challenge, but something I must continue to work on.

Last week I ventured into the Big City to take care of a few errands, including getting my shaggy locks trimmed (no need for the guffaw at this point). My keenest observation was the speed at which many people move at during the course of a regular day - a speed far faster than I am ready for. Admittedly this has me a bit concerned. The train was fine - a concern before last week, but I have that under control. Walking with others who are not used to my pace is another challenge - especially in NYC. (That one takes me back to my childhood walking with my 6'1" father who insisted that I learn to walk at his pace not he walk at mine - I usually met him at our destination at a slightly later moment.)

Well as my philosopher designate R.A.D. offered, there will always be something else that will appear on the horizon which we will need to contend. I think that is just to make sure "he/she" knows we should be paying attention and constantly making sure our checks and balances are in check. On the other hand there those events that truly test our emotional, physchological and physical wellbeing. Before the discovery of my tumor, I believe that I truly subscribed to the belief learned on the school playground many years ago - (and the great song lyric as well) - 'pick yourself up, brush youself off and start all over again.' What I have learned is that sometimes you just don't want - or even still - cannot and then you run this huge risk of getting stuck in place. The getting stuck one is the factor I fear the most - and I think most of us do. I think most days I am making the best effort possible to get myself more acclimated to normal movement and functioning - I read longer, walk a bit longer, drive a bit more, and prove that I can get back on a step stool and change a light bulb without falling flat on my face.

I do not know how you package all of that and sell it as the recuperation survival kit. I am inspired by those who have far more difficult situations with which to contend. I am inpsired by folks in their eighties and nineties that insist on maintaining a dignified and active life style. These folks should be our real heroes - dealing with physical adversity or aging and being really cool with it and doing all that only their physical limitations stop them from doing.

See you around the campus...

Maybe it was a good idea not to take up tightrope walking after all....

It seems unbelievable, but today marks the eighth week since the surgery. What an odyssey. Well, to mark this auspicious occasion I started a specialized round of Physical Therapy today known as "Vestibular Rehabilitation Therapy". In normal people speak that means that I am embarking on nudging the educational process of my brain along in processing where exactly Terra Firma is supposed to be.

I have noted in earlier writings that this experience has taught me that the brain is one heck of a machine. I am continuing to find it more and more fascinating how the brain processes and delivers information, but as importantly, how it learns to compensate for deficit performance when something goes awry.

What I have principally learned about this part of my recovery I owe to the Acoustic Neuroma Association, a fabulous advocacy and educational organization established for the purpose of providing ongoing information to the acoustic neuroma pre and post operative community. Their website is 'http:www.ANAUSA.org'. They have produced a series of pamphlets on all aspects of AN treatment for those who may be reading the blog and are seeking additional information.

Under normal balance conditions, we process information for balance through three separate systems: the Vestibular System, Vision, and Proprioception (there's a new one for you crossword puzzle folks). I am really going to try to keep this as simple as possible -really - no, really.

When all is hunky dory with the vestibular system, information about where up is and where down is processed by the vestibular nerves. The nerves, sending the data to the brain, in turn sends signals to the hydraulic system in both inner ears. This information is like the way the flaps (ailerons to you aeronautic techies out there) work on a plane. For an airplane to turn right, the right flaps go down, the left flaps go up and off you go. Now imagine that the hydraulic lines are not functioning on one side and you try to turn the plane. Oops - it just is not going to happen (don't you just hate when that happens?). Well the same thing happens when the vestibular nerve function no longer operates in the human head. You literally wind up with the room spinning because there is information only being transmitted on one side and the brain has no idea which end is up. Additionally, it is the direct connection from the Vestibular Nerve to your eyes (sending your eyes in the opposite direction from the head at the exact same speed)that aids the brain in processing of things appearing stable. What does begin to happen is that other tools, normally considered by the brain to be secondary tools, begin to kick in.

That takes us to the other two systems. Vision normally reinforces what the vestibular system has told the brain. If the vestibular system is not working, your vision begins to kick in as part of the primary information source to the brain. And if you are not good at processing information such as the horizon moving towards you, for example when you are moving quickly, or if you spend too much time looking out the side window of a fast moving train or car, you will develop motion sickness because your brain is just not getting a fix on where the level horizon is. Vision however, is of little obvious use in the dark or where there are no fixed straight objects to fix a focus on. Which is why should you get out of bed in the middle of the night you will initially have difficulty with your balance until you can fix your adjusted sight on an object in the room.

Proprioception refers to the sensor function provided by the joints in our ankles, knees, hips and spine and the information send back to the brain regarding the alignment of the bones of any or all of those joints. There are also sensors in the balls and heels of our feet that help in sending information as to which direction our body is leaning. This will be impacted on whether the surface is firm or soft - hard floor or plush carpeting, for example. For people who have poor vision issues, getting information from their spine or derriere if they are sitting or laying down will give them a sense of stability.

On a priority basis, the vestibular system will always be correct. That information will be backed up by the other systems. The fly in the ointment is when the vestibular system is not working properly and the brain becomes truly confused in attempting to calculate where the horizon should be. Here is what is so fascinating. When the vestibular function in one ear stops functioning, initially the brain continues to accept the data sent by the good ear only to interpret the information as the whole world spinning (going back to our airplane flap analogy, think one set of flaps working, one not, and the plane spiralling). Generally speaking, this is not a good sensation and tends to limit an individual's mobility. But the brain (being the clever machine that it is) does something very interesting at this point. It will at some point shut down the vestibular function on the working side, enabling the vision and the proprioception systems to provide the primary data.

And that brings us to where I am at this point in the recovery process. As I mentioned at the outset of this posting, the physical therapy process that I have begun is designed to train my brain to accept the primary information for balance from the so-called secondary systems, so that eventually, the vestibular function in my good ear will be turned back on and will work in coordination with the other systems.

If you think it takes a lot to understand all of this, you should try living with it. I am finding that the more activity I can find for myself that forces the use of my vision and proprioceptive systems to keep me vertical is a good thing. Whipping my head back and forth is still not a good thing to do so I think I will be staying clear of attempting to cross Broadway at Times Square for a while yet. I got to hit some golf balls today at the local driving range and while the follow through with my swing had a bit of an impact on my stability (that's carefully worded "is that guy over there drunk or what?") I did squarely hit the ball and was not totally dissatisfied with the results. Frankly, the most difficult part was the follow through and bringing my right leg into position which in essence leaves more weight on the left leg and had some curious impact on staying steady. But I will go back in a few days and do it again just to keep working at it. In the meantime, please refrain from commentary on the form - give a guy a break - I mean I did not fall over once.

There is still some fatigue plaguing me. It is manageable and I am practiced on how to pace myself. Napping is not a considered option as I do not want to mess with the yet fragility of my nighttime sleeping cycle. Headaches still arrive occasionally - Monday's first PT session brought on a dusey upon awakening on Tuesday morning. There is still an occasional twinge of pain that comes from the incision site every so often - I have written that off to nerves and tissue mending and getting reconnected. Admittedly it's a little weird but no one told me this was going to be quite the same thing as recovering from a splinter removal.

Hearing is at this point is what it is. I am yet investigating the BAHA device and gathering some additional information to make an informed decision. As it stands now, larger groups are troublesome and larger venues are plain annoying and for me worth avoiding at this point. The tinnitus is now with me for over a year. I wonder if it stops would I miss it? I think not, but at this point it keeps me amused when I am alone. In a group setting it is a true annoyance. I think that getting back to the office is going to present its own challenges with the activity that goes on in our practice throughout the day. Granted this is a realistic concern, but not one that is insurmountable. I do think being medically designated an 'SSD' - 'Single Sided Deaf' person on the cusp of my 59Th birthday has been a little bit of a smack on the side of the head, but we will get used to how to work around this and get a good handle on how to work with it.

At this point I believe it is fair to state that Phillipe Petite anf the flying Wilendas need not worry about any potential competition from me in challenging the high wire accomplishments for which they hold records. I am going to keep on staying stable while working on step ladders and changing light bulbs in high hat fixtures around the house for now and see where that takes me.

Oh - no one has asked, but I have passed the half way point in Middlemarch by George Eliot. I am loving it and only wished that I understood all of the 19Th century references to the subtleties of British upper middle class life in the English countryside. The current goal is to complete it before I return to work. I wonder if the insurance company would alloy that as part of the evaluation of my progress?? Hmmm.

See you around the campus....

It's surgery plus 6 weeks and we return to NYU

It does seem amazing to realize, but yesterday was six weeks since the surgery. You know what they say...it's amazing how time flies when you're having a great time! Today was follow up day with both Drs. Roland and Golfinos as well as my first Audiology Test since the surgery.

From a self assessment standpoint, it is fair to say that I have seen real progress over the last few weeks. My walking is now up to a bit over 2 miles and it is a great feeling to be aware that 3 weeks ago going up and down our driveway was a big deal and I have achieved this interim milestone. And frankly, I have learned more about our neighborhood in these past few weeks than in the over four and a half years we have lived here. Even some of the dogs have stopped barking at me. I am still a bit wobbly - the balance thing is yet annoying as all get out. My paternal Grandmother had mastoid problems in her 80's, and we used to hold our collective breath at family gatherings when she would first stand up or 'come in for a landing' when attempting to sit down. Boy, do I ever relate to that right now. It may not be quite as dramatic, but I get the wavering part big time. My headaches are far less intense and do show up less frequently, but still need some medication to ameliorate them. Fatigue is still with me, but far less than it was even 2 weeks ago, but if I have an active day, I definitely am off to nap time city in the late afternoon.

The other two disruptive issues and rather disparate - both can be overcome and modified. One is probably a combination of behavioral and physical and the other is definitely physical. The first is my sleeping cycle - it really has been off kilter since I got home from the hospital. Most nights I fall off to sleep but within an hour or so I am wide awake and stay that way for at least 2 to 3 hours. It's maddening. I have tried taking Tylenol PM, grape juice (suggested by my VNA Nurse), Benedryl, counting sheep, singing "99 Bottles of Beer on the Wall", and visualization. All to no avail. Tonight will be the first attempt at taking Melatonin. I'll keep you posted on how that works out. I know that I have to get a regularity back to my sleep cycle and the problem can easily become a self fulfilling prophecy.

The second is my hearing. Right after the surgery, Dr. Golfinos reported to Eileen that the monitoring of both my facial nerve and cochlear nerve indicated that my facial nerve came through the surgery unaffected and that there were some signals that the cochlear nerve would be functional on some level post-operatively. The facial nerve was a huge deal - it is quite common for IAS patients to have temporary facial paralysis at a bare minimum. There is also plenty of literature that describes facial paralysis from several weeks to permanent impact. I am so very grateful for the skills of my medical team that saved me from that fate. However, throughout the last 6 weeks, there has been no indication that I am hearing anything in my left ear.

So that takes us to the Audiology Test. The test today confirms what I really did not want to 'hear'. There is no hearing activity in my left ear at all. Curiously, the Tinnitus is still with me. Every so often I get these weird noises in the ear - I liken it to the electronic sound you get when an amplifier gives you that loud feedback we all dislike. While I welcomed that sound thinking that maybe it meant that the Cochlear Nerve was slowly repairing itself, the truth is that is not the case - it is the Tinnitus - my Brain dealing with the changes of learning to handle hearing with the good ear.

While I have been prepared since my diagnosis for this outcome, knowing that it is now a reality is not easy. I fully realize that many would say that "...it's only your hearing in one ear, what's the big deal?..." I am not sure that I can fully explain this. We have all heard the stories of what folks have taken for granted until they do not have the use of a limb, or an eye or an ear and then circumstance takes them up short. I cannot say that I have always taken full hearing for granted - what I do know is that having an acute sense of the beauty of sound and music, the spoken word, the quality of a voice, an echo - the thud of a door or the cacophony of multiple sounds in one place - have always been present for me. I now am learning that you can certainly function well with one ear - it is just different. There is a whole new learning process I must accommodate myself to - locating where a sound comes from, working through the confusion of a filled room while my Brain tries to figure out how to process those sounds. And frankly, those sounds processed in a new way literally hurt and create confusion. Attempting conversation at a table in a crowded restaurant becomes a lot of nodding, hoping that you just have not agreed to supporting Sarah Palin in her candidacy for Dog Catcher.

I will learn how to deal with this. It is, agreed, not the end of the world. I will learn to accommodate how I listen to music and process sounds and voices in varied circumstances. I will learn to not turn to someone and ask "what?" and I will probably begin to go through each day with a bit of a different appreciation of what I see and what I hear. At this point you may be asking what about mechanical assistance for the hearing loss.

Well, here's the low down on hearing enhancement. Conventional hearing aids are, for the most part, devices that increase the volume of the signals that are turned into words, noises, etc., by your brain as transmitted by the cochlear nerve. There are cochlear implants that are used for overcoming many of those issues as well. However, the key there is the cochlear nerve's ability to transmit that enhanced set of signals. My nerve is now dead and therefore traditional hearing aids or a Cochlear Implant are not the answer.

But there is an instrument called a "BAHA" manufactured by an Australian company called (curiously) 'Cochlear'. If you have any morbid curiosity, their website is 'www.cochlear.com'. The device is made up of two parts. In essence it is an external implant. A titanium screw (like a dental implant) is surgically implanted (as an outpatient procedure) on the side of your head, behind your ear, so that it fuses with the bone structure of your skull. After a 3 month waiting period (for the fusing to take properly), you are then introduced to this little electronic transmitter that literally clips on to the screw. It will transmit the sounds in the patient's immediate environment so that it vibrates against the bone. That vibration is then picked up by the good ear where it will then be processed as a part of the hearing process. It actually comes with not only volume control, but input jacks for an MP3 player and a telephone headset.


Now I ask you, how cool is it to have your iPod plugged into the side of your head? Okay...perhaps that was not the visual I was seeking to create. But you get the idea - the technology is out there and can potentially make a huge difference in my hearing future. There are probably some issues I have to figure out (like being the follicly challenged person that I am, how's this transmitter going to look stuck to the side of my head? I wonder if I could opt for the antennae that Ray Walston had on "My Favorite Martian".

Quite a vision, huh? Check it out: http://www.tv.com/my-favorite-martian/show/152/viewer.html?ii=1&grti=101&gri=152&flag=1&tag=container;content_wrap

See you around the campus....

Learning that recovery is not linear...

I have been holding off on this latest update for several reasons. I really wanted to begin to feel better so that I could have a [finally] new perspective on post-operative life and I was really struggling about posting the pictures below.

When I started this blog almost 3 months ago, I knew for certain that I had the opportunity to catalogue the process and the progress I would make through this journey. I also knew that I wanted to use it as a vehicle that would cause me to become educated about IAS's but also drag the rest of you through that process as well. I also opined that the information would not only be for those who knew me, but perhaps for those that would pick up through the great world wide web their own need to learn about IAS treatment for their own needs.

That is what got me to the picture conundrum - is there importance in letting people know not only what to expect in terms of the physiological changes, but did it also make sense to know what it all looks like? I knew that viewing another person's incision pictures had helped me prior to my surgery, but would people judge that in some way that it was unnecessary to show the incision? And of course, for those of us of a certain age, there is that distant memory of Lyndon Baines Johnson not only pulling his Beagles by the ears, but the 'hey look at my Gall Bladder incision' as he ceremoniously raised his shirt for the press corps several weeks after his surgery.

Well, I have decided to post those pictures (not LBJ's - mine) because I think it is important to see how we heal - and quickly, too.

So here are - Monday, June 15th, 2009. Ironically this was taken at home the morning of the day we learned that I was to be kept prisoner for another 5 days in the hospital. This was exactly one week after surgery.

And here we are on Friday, July 10th, 2009. I don't know about you, but I am pretty impressed with how quickly the incision has healed. Now when people stare at me I know I should probably check to see if my fly is zipped before I assume that it's my head they're staring at.

You may ask, so the incision has healed so well, why aren't you out riding your unicycle or skydiving or rock climbing with one of your daughters? Well the answer my friends, is not only blowing in the wind, but it is written all over my face when you watch me walk - funny things happen to you when you have micro-surgery on your cranial nerves.

Let us start with the headaches. Yes, they are still here - certainly nothing as intense and nerve splitting as when I was hospitalized, but they are yet with me every day. I have learned that sometimes they show up for no particular reason, but my guess is it is part of the healing and knitting process going on internally. I have noticed that too much physical exertion can bring them on. I have noticed that if I bend down to do something (please do not tell Eileen that I do that!) it can bring one on. And plain old fatigue - which comes on quite regularly - can also be a trigger. My trusty Celebrex and I have become good friends and the twice daily dosage helps a great deal. And mostly I have learned to tolerate them to a great extent - when they get too intense, I just go lay down and try to get sleep to quiet them down.

Then there is this balance thing going on. I am asked if I feel dizzy and the answer is a definitive no. Am I able to walk unaided? - definitely, yes. Do I feel in control of complete balance? - no. I liken it to the bubble you attempt to get even on the horizon when you are using a level in carpentry. I just cannot seem to get it exactly even on the horizon. So for longer escapades I use a walking stick - for the traipses on familiar turf I am on my own. This part does not make me particularly happy at this point, but this is part of the non-linear line of recovery and I am finding new stores of patience every day to keep myself upbeat about what I can accomplish. I do walk every day - my daily walk is now almost a mile and a quarter - takes me about 50 minutes (so marathoners of the world fear not of me as a competitor seeking to take you on).

And then there is the issue of my hearing in the affected ear. You may remember that prior to my surgery, I had been measured at 64% hearing in my left ear. Well, for now I have little or none. I am scheduled for an auditory examination on the 21st of July, as well as progress examinations by both Drs. Golfinos and Roland. I am of course hoping that my current state is an immediate reaction to the surgery, the fluid that tends to build up and the healing process - and in time I will get some of it back.

I am so very grateful that I did not have any facial nerve injury at all and have not had a single moment of facial paralysis as very well could have been the case. Let's hear it for my amazing surgical team!! However, I am acutely aware of how the hearing has and could impact me on a social basis. Issues such as seating placement at a table, ambient noise in restaurants, waiters or waitresses that stand on the impaired side and tell me about specials or ask for my order while I have no idea what they have said. Here's a good one - answering the phone and spontaneously holding the phone on the wrong ear. While amusing on a limited basis, these are not things that make me smile. I had always prided myself on how acute my hearing ability was - whether it was music, conversation or the skill of hearing when a mechanical device just did not sound right and edging towards mechanical failure. I do not want to lose those abilities so we are gong to keep looking for a better outcome. In the meantime I am really trying not to let it get me down - but that is not always so easy.

The last annoyance at this point is traveling. I did take a wild adventure this past week and waddled off to the big city for a few hours - all by myself, no less. Through the miracles of mass transit, I took a train to mid-town Manhattan, went for a haircut (watch that snickering - that's really not nice) and visited my partners and staff for a few minutes. After a delicious lunch provided by my partner Gene, I headed back to the much quieter and slower moving suburbs. I am so glad I took the trip - I managed fine -slow to be sure - but I was able to assess for myself what I am up for and not. In case you're wondering - I am not up for rush hour or the fast movement of anything quite yet - this I know now for sure. But I definitely feel that the following day I felt stronger and more confident - and while our home is a perfectly lovely setting to recuperate, getting to change the venue was a real upper, for sure.

This weekend Ei and I have taken our first road trip with our dear friends Susan and Dick Hecht to the Berkshires. For a lifelong dedicated car traveler this 100 mile trip was long anticipated my me, but certainly was not a walk in the park. With the recommendation from my medical staff to recline for the trip I felt that my head would be less likely to bob around (this, folks, is not something you would normally notice at all - unless your brain was still getting used to reducing its spatial relationship with your skull. Ei and the Hechts have their agenda and I have mine. They got to take a House and Garden Tour sponsored by the Lenox Garden Club and I got to hang back at our inn and write this posting and begin to tackle my newly acquired edition of George Eliot's Middlemarch generously provided by our kind of, sort of, related by marriage, cousin, Elizabeth and husband Bob. Elizabeth, inspired by my earlier writing from Easthampton and reference to 19th century English countryside novels, offered up Middlemarch as her all time favorite and here I sit with the Brooke sisters and their uncle undertaking my first post-operative read.

Tomorrow we are off to a Tanglewood concert to see Joshua Bell perform with the Boston Symphony Orchestra. I am very excited about this outing and am looking forward to being back at Tanglewood. Ei and I have been coming here on and off for over 35 years and this part of the country continues to amaze us both with the richness and diversity of its Summertime cultural offerings of theater, dance, music and interpretive arts as well as the scenic beauty of the region. It is indeed a very special part of the country, let alone the world as a whole. And so another test of my energy and focus await me and I look forward to takng it on.

Maybe Ei will agree to let me buy a new hat while we are at the concert. I hope so. (If you don't know about me and hats this is not nearly as funny for you as it is for those who do get it - right SGF?)

...Free at last...

Greetings and salutations to all of my loyal Blog readers out there.

First things first...I am home..not in the hospital. And due to the lag in getting my proverbial you know what together, I fear there has been a bad communication gap to that effect - so my apologies to all.

So where were we - oh yeah, spinal drain. That came out once my medical entourage (if you think I'm kidding, you have never stayed at a true teaching hospital) concluded that my cranium had managed to properly seal its heretofore mentioned leaky weep holes and I could be sent off on my way. And so, without any ceremony and definitely no pomp and circumstance, Eileen and I departed NYU Medical Center once again.

For you skiers out there (especially those of us that call the Northeast home turf), here's a riddle for you. What's more fun than slapping on your rock skis and attempting a 'one last run' on a natural snow trail in Vermont, in late March at about 3:30 in the afternoon? Answer: being driven home from midtown Manhattan after cerebral surgery. There has to be something somewhere in the Stimulus Package that includes paving NYC streets and highways. There is something very bizarre about living so close to some of the finest medical institutions in the world and then being sent on to that city's streets as a post op patient. There has to be a municipal finance opportunity in this somewhere - maybe Mayor Mike can lay out the bucks before hand as a good will gesture to entice more voters.

And so home I have been since the 20th of June taking on the challenges of getting myself back to where I was physically (and dare I say) and mentally before all of this started. When I had first begun doing my research about acoustic neuromas I kept coming across references to post operative discomfort (I think they meant pain), disorientation, malaise and fatigue. Now, any one of those could be daunting and any normal person would say to themselves, okay, I'm a rational person, I'll pick one or two of those because going for the whole caboodle doesn't seem likely. Well...remember the old "it's nice to fool with Mother Nature" ad?

Here are a few of my cautions to patients in similar post-op situations. First, never lose sight of the fact that the after affects of general anesthesia should never be underestimated. Don't get me wrong - I am not advocating that we go back to the chloroform soaked towel over the nose or even a great bottle of Bourbon at the doctor's ready hand (was that for him or the patient?). Being a child of the late 60's and early 70's there is nothing in my past that would indicate that pharmaceuticals properly administered are a bad thing. But they do linger and have their impact on all kinds of inner workings of your normal processes, brain functions and ... boy what dreams. More on those in some later posting..maybe.

The next cautionary warning - pain killers. My previously noted post-op faves - morphine and percocet. Great combo but not the staff of life for sure. I came home to a decent supply of percocet that I quickly learned once I was out of the hospital was really getting in my way of holding on to the grab bars of getting a grip on getting this recovery underway. So I have now gotten myself to occasional Tylenol doses (I am saying that in case there is a panel member of the FDA observing the blog and is anxious to make an example of me should I prove to be an irresponsible Tylenol user and need the government to stop me from abusing myself ... oops... my politics are getting in here ...sorry) that help with a headache that still visits me each evening.

The fatigue is getting better but is none the less a reality. I have developed such an amazing understanding of older people that operate their daily routines with the wide array of impairments that affect their focus, clarity and dexterity. The seemingly simple undertaking is suddenly not. Walking a straight line, balance, diligent about what you can lift or not, bathing and showering... learning the patience to endure the adjustments to modifying those tasks is a life's education all by itself. Maybe as we age we just adjust ourselves as we 'mature' as opposed to being thrust into the scenario as the result of sudden illness or physical impairment.

I do feel as if I live in a haze - again no need to comment here. But there is this aura that I feel is between me and staying focused on specifics for extended periods of time (hence the delayed blog postings). I am on an absolute quest to make sure I am back on my skis by Thanksgiving and causing havoc with my fellow Ambassadors at Mount Snow (as much as we can get away with anyway). I have started daily walks in our neighborhood -I am up to about 3/4 mile as of today. I am quite a sight - I have so many masters to serve. Eileen insists that I take my phone - I do and I have pledged to call her at her office when and if I fall in the middle of the road and will wait there until she arrives (okay - I know that was just being silly). Of course there is my wide brimmed genuine Italian Straw Hat ( kind out of "Death in Venice") which I did buy in Venice, one of my walking sticks and of course a water bottle to stay hydrated. Just me and the birds and squirrels - very pastoral indeed. Sleep is strange - middle of the day no problem - middle of the night - problem. Stop the middle of the day nap - middle of the night still a problem.

I am getting home visits from a visiting nurse who is monitoring my progress. As fate would have it she's also a semi-pro pianist and awed by our piano when first she arrived. I now will not let her leave until she plays something for me. It's a very cool arrangement. I'm not exactly sure how much the VNS and Aetna approve but what they don't know won't hurt them. I am also getting some PT at home as well and my therapist, Phil, is a really good guy. He totally understands where I am right now, has validated it all, and is very focused on getting my confidence and balance back on track. Which also takes me to me next suggestion - please make sure that you ask every question you and/or your significant other can ask your insurance carrier and the social service staff at the hospital in which you will be treated. There are an entire host of services and therapies that can be made available to a post op patient. But honestly, if you don't investigate and ask, they are not going to fall into your lap. Do not be shy - these services can be invaluable in nudging your recovery along and take you to full health that much faster.

It's really getting late and thankfully, I am fading here. But I did want to continue to thank so many, many of you that have continued to e-mail wonderful messages of hope and support, send get well cards, fill up our answering machine and attach comments to the blog. Your love, support and faith in getting us through this has been truly unbelievable. Thank-you, thank-you.

A funny thing happened on the way...

Well, maybe not so very funny, but let's just say not exactly what I bargained for. At this point I would not blame you if you thought I had taken a few well earned weeks off and headed to some exotic tropical isle. Truth be told - nothing quite so exotic.

I do not think I mentioned earlier that I had developed pneumonia in the hospital during the first week, but armed with antibiotics, cases of tissues, a strong will to be freed from my hospital bed and a desparate need to stop using that charming urinal thing, I succumbed to an extra two days in the hospital. I was sent home knowing that the pneumonia was under control all though coughing and expectoration took on whole new meanings.

On Monday the 15th, Eileen and I went off to the big city to have my sutures removed by Dr. Roland. While I am not sure of the origin of the 'stitch in time saves nine' adage, I was definitely psyched to get the process moving along. I had noticed that my nose (in particular my left nostril) was dripping quite a bit - but presuming that I was getting rid of the pneumonia, it didn't seem out of character. Well, we got ourselves into Dr. Roland's office and within the first 90 seconds I knew I was in trouble. When he saw me ever-so-politely dab my left nostril, he asked a few pointed questions, had me demonstrate my 'dripping technique' while leaning forward and gave me one of those looks you just really hate getting from your physician.

You know how when you read or hear about things and they say that 'only some small per cent' of the patient population will have such and such a reaction and you feel so relieved that it will not happen to you? Well, remember that it has to happen to someone.... As it turns out there is always a [very small] risk that an AN patient can experience leakage of CSF (Cranial Spinal Fluid). And guess where it often leaks from? Right...the nose (or the incision site itself). So my nasal dripping was nature's way of letting us know that the tumor had left some space which allowed for the CSF to find a way out. You may have guessed at this point that this was not considered to be a good prognosis. After Dr. Roland said the words "readmit immediately" I think I may have tuned out the rest of our conversation. I did hear "flat on your back for five days" and I do remember hearing 'spinal drain' and do remember hearing 'danger of Meningitis' - but by then, frankly, they could have said labotomy and I would have nodded in response.

CSF provides a rather important function in the daily maintenance of your brain and spine. CSF allows our brain to float ever so calmly within the confines of the skull. For you car buffs out there it's the equivalent of a hydrofluid shock absorber system. It circulates around the brain and within the spine allowing all of those important operations to function in a literal sea of protection. That is until it gets disturbed and one of its many protective seals is broken. When you have an AN removed, firstly, as we all know now, that the brain must be accessed to conduct the surgery. The first contributor to major headaches post operatively is the time the brain itself is exposed to the air - brains just don't like fresh air - go figure. Next, when the tumor is removed, there is a void where the tumor once was. This space was indeed filled by donor fat tissue that came from abdomen (I told them to take as much as possible for the good of medical research and my recovery). However there is always the chance that not all of the 'empty space' (no funny comments here) create the opportunity for the CSF to find a way out. In my case it sneaks around the Eustachian Tube and found its freedom through my nostril.

The treatment is very sophisticated. First they find some Neurological Resident who needs an activity at 3:00 am to visit you in your hospital room and ask you to turn to your side. And with the famous words I am convinced they teach as part of the MCAT review course, 'this is only going to pinch a bit', this medical professional the same age as my children inserted a drain in my spine somewhere near the intersection of the L5 and S1 verterbrae. Did I mention yet about the headaches you get when your CSF is not in equilibrium? Because even if I had, I will mention it again - there is no valid comparison that comes to mind - but if our brain banging up against the skull without any cushioning does it for you, then you get the picture. When morphine and percocet (as a refreshing cocktail) don't dull the pain - that's what I call a headache. And that is how I spent the following 5 days in the hospital. Pishing into a portable urinal (that's urination to the more sophisticated), taking drugs, rejecting most of the pot roast, baked chicken, oatmeal and other niceties offered by the dietician staff, and living on Dr. Brown's Diet Black Cherry Soda (I think Jason cornered the market for me), granola, yogurt, yummy tuna salad, and something the hospital calls sea food salad - but we're just not going to investigate that one too deeply.

Next...GET ME OUT OF HERE....