Essential Tremor - Facing and (Maybe) Ending a Lifetime of Frustration, Part 4 (Final)

STAGE 2

Stage 2 of the DBS process is performed under general anesthesia.  One remembers only the beginning and the aftermath.

I was wheeled into a separate operating room there to be confronted by a new set of doctors.  Under their direction, I took a few deep breathes and slipped into the land of nod.  My surgeon, Dr. Alterman, entered the room after I was put asleep. 

An incision was made on the top of my head, beginning inches above the eye and extending perhaps three inches toward the back.  Dr. Alterman somehow took the wire that was attached to the electrode (now attached to the brain), trailed it down behind the ear into a generator that sits in a pouch buried in my chest, which is located just below the collarbone -- he created this pouch with another horizontal incision, perhaps three inches long.

I was kept under observation until I regained consciousness; then I was wheeled to the hospital and hooked up to wires and stuck with endless needles.  The local anesthesia remained effective for hours.  Then headaches began and then worsened.   Pain killers were introduced but were slow to lessen the nighttime of pain, which was directly related to the wounds on my scalp and to the bruises to my head.

Pain was under control by morning and I itched to be free.  I managed a breakfast; the surgeon looked me over and agreed to release me.  I reached home in mid-afternoon and went to bed.  The wounds in  my head made it impossible to sleep on my left side but, fortunately, I’m an ambidextrous sleeper and the right side worked just fine.

PROGRAMMING    

The surgical aspect of DBS is followed by the programming function usually in about two weeks.  Mine was later because I had to conquer a four-day bout with double pneumonia (nothing to do with the brain surgery).  Dr. Ludy Shih, a board certified neurologist,  performed this critical function.

Using special instruments, Dr. Shih activated the system created by the surgeon, Dr. Alterman. She established baselines for pouring water, writing and drawing lines – these activities were filmed.  Then she sent various charges of electricity to the electrode in my brain.  They caused my right hand to react in various ways.  I interacted with her and, eventually, we arrived at settings that should provide the most benefit – my right hand is fully functional.  I repeated the baseline tests and the before/after results were filed.  Dr. Shih then instructed me in the use of a device that permits me to check the battery, and to turn the therapy off at night and on in the morning (to extend the life of the battery.)  The entire programming process took about two hours and fifteen minutes.  It was painless.

It looks like my DBS gamble will pay off.  I can drink a glass of water; I can eat soup; I can play the organ; I can write/type; I can be ordinary.  If I’m lucky, hereafter my visits to Beth Israel will involve tune ups (the operation does not stop the progression of ET.)

Will I try again for the left hand?  Will the surgeon accept a man my age a second time?  Those questions will be resolved in due course.

EPILOGUE

These essays were written because there is little publicity about ET, and doctors don’t spend much time studying a neurological disease that afflicts only 5-6 percent of the population.  But if you’re part of the 5-6 percent, you are hurt by this lack of information, sometimes for a lifetme – you need to know about ET and what can be done about it and, perhaps, you will benefit from the published experience of one who has seen all that can be seen about ET.  I hope so.

God was with me on my PBS journey.  I suggest you request His company if you follow in my tracks.

One must bow in deep respect to the men and women who dedicate years of their lives researching, experimenting and, finally, perfecting exotic surgical procedures like DBS.  Dr. Ron Alterman and Dr. Ludy Shih are such people and they will carry forever my deep gratitude.  They are a credit to the God who made them and who directed their careers.    

A final note: I am a layman with no special knowledge about medicine.  My description of the DBS process could be incomplete or inaccurate in some details, but the thrust of my reporting is, I believe, essentially accurate.

Robert Kelly, author of several books on baseball and history/politics, is also a freelance, award-winning journalist whose work has appeared in many newspapers.  His latest books, The National Debt of the United States and Neck and Neck to the White House, are available at Amazon and the better bookstores. His e-mail address is bobkelly307@verizon.net.