The Night Before Surgery

There is a poem in the anatomical term "Meckel's Cave," the cavity at the base of the skull that houses the trigeminal ganglion, but its meter and rhyme as yet have not come to mind.  Medical facts prevail.  A grape-sized benign tumor on the right side of the facial nerve has created a progressive series of effects: facial, tongue, gums, teeth chin and cheek cold and numbness, tingling, discomfort, and a variety of weird and unpredictable electrical pulses and, of late, difficulty in chewing, my bite is off, and I have a persistent dull ear ache all on the right side.  

The symptoms began in April of 2007, a tingling of the nerves around the right lower lip.  I thought it was a herpes kind of cold sore, until the sensation moved down into my chin on the surface of my skin.  By July when the sensations deepened I told my doctor, who sent me to a neurologist.  Scheduling being what it is, I did not see him until September.  By then my tongue had begun to experience the same tingling, and if I rubbed it against my teeth I could feel short electrical pulses through my lip, chin and cheek on that side. He suspected a stroke, and so I went for an MRI.  It was negative ... for a stroke ... I would learn only two days ago that the MRI then, as now, shows what appears to be a schwannoma of the right trigeminal nerve III -- the facial nerve that serves exactly the areas where I experienced symptoms.

The story of subsequent diagnostic tests and misguided treatments a year ago remains for another day.  I am writing this blog primarily to give and express a deeply felt gratitude to the very many people who have and who are helping me through this experience as well as to create a single point by which family, friends and the curious can find out information about my schwannoma experience.  Denise Yarbrough, my life partner, will write it with me, because it is very much her experience as it is mine.  She is here with me now in Pittsburgh, the night before my surgery, as she has been all along listening to 18 months worth of complaints and concerns about my symptoms, frustration at obtaining a clear diagnosis, then suddenly when I did, discerning with me the best course of action.

Meckel's cave, as it turns out, is one of the most surgically difficulty areas in the human body to access.  When I first received the diagnosis, my doctor was not even sure whether surgery was possible in that area.   Within days we had more information, however: an excellent surgeon in Cincinnati, Dr. John Tew, who pioneered a procedure through the back of neck, and who very kindly reviewed my films with his team and accepted me as a candidate.  Then a friend, Christina Stark, heard of a newly innovative procedure at the University Pittsburgh Medical Center, under the direction of Dr. Amin Kassam, who uses an endoscopic nasal approach.   I contacted the center via the e-mail address on their web site and received a response the same day from a wonderful person, Lois Burkhart, who talked with me patiently on Wednesday between blaring Orlando airport announcements.   The next day my doctor sent my 2008 MRI "films" (a DVD, actually) and the day after that Dr. Daniel Prevedello, one of Dr. Kassam's team, called me to say that I was a candidate for their innovative procedure as well.  I had read an unpublished, peer review paper that he and others have written explaining the success that they have had with this new approach, and he offered his time, expertise and consideration to answer all my questions about it.  

Over the weekend, I sought to obtain information about these procedures in order to make a decision.  In the post office I ran into Joan Brumberg, who got me in touch with the much respected Dr. Ann Costello of Ithaca, who called later that day to help me talk through the issues. Dr. Adam Law, my primary doctor, in addition to all of the research on approaches and connections with doctor's offices, offered his opinion in the service of my making a decision.  On Sunday morning I talked with Vice President of IT at Cornell, Polley McClure, who some years ago had emergency brain surgery; she not only offered thoughts but made Denise and me laugh hearing about how she threw the nurses for a loop the day after her surgery by getting up unbidden and unassisted to get a cup of coffee!  And then my cousin, Dr. Elizabeth Morgan, called with expertise and family concern to guide me.   

On Monday Denise and I drove down to Pittsburgh and checked into a small apartment frequently used for situations like this one: where people come to stay for medical treatments for extended periods of time.  Yesterday we spent the entire day, from 7:30 in the morning until 8:15 at night going from one office to the next for pre-operative tests:  blood, MRI, CAT scan, ENT consult, EKG, chest X-ray and of course in-take for surgery with Dr. Devon Amin, who also could not have been more patient with me (I ask a 1,000 questions :-) and then the consult with Dr. Kassam and his main surgical team, Dr. Prevedello and Dr. Gardner.   I could not have asked nor received more careful consideration of my current options.  I feel completely confident in the care of these truly amazing doctors.   

The hospital called a short time ago to set the time: we must be there at 5:00 am.  I know that I am far from the most ill patient whom these doctors will serve.  But I am very, very grateful nonetheless to have a diagnosis, finally, and a plan of action to save and savor my senses.  And to Cynthia Golden I am particularly grateful not only for waiting on dinner for Denise and me to arrive last night at her home, but to her and her husband for giving me the last fruit of the grape, a lovely California red and exquisite French champagne, I expect to have for some time!

So many people not mentioned in this blog have showed unending friendship and compassion over the course of these 18 months and especially in the last four weeks.  Please know I have you all in my heart with thanksgiving.  I miss and love my boys, Nikko and Sam Schaff, very much (and can't wait to see you soon!).  And in time, I promise everyone that poem.