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.