In the early 1980s I began work as Chief Engineer
for The Drive Master Corporation, a New Jersey company that made mobility
systems for the severely disabled. It was exciting work. We designed
systems that would allow giants, little people, narcoleptics and those
with spinal cord injuries to drive cars. Spinal cord injuries above
C4-C5 were a challenge, but we felt we could design sufficiently-advanced
puff and sip controls that would get them out on the highways too.
It was just a question of technology and time. Eventually I left the
world of the mobility-impaired for orthopaedics and spine, assuming
I would never revisit the world of puff and sip. I was wrong.
Last year, I began stumbling and falling. I had fallen down
the stairs several times. The subsequent chain of events is an odyssey
of fear and trepidation, of the loss of life force, confronting
one’s own mortality, of anger and denial and facing what one
fears most. At the same time it is a story of faith and friendship,
of the reaffirmation of the inherent goodness of people. Repair
and rebirth. It is also a sociopolitical saga of the most powerful
and sophisticated nation in history and the failure of its vaunted
healthcare system. Perhaps most importantly, it is the story of
the patient of tomorrow, perhaps from hell. A patient for whom nothing
goes quickly enough, for whom a little knowledge and money can fix
anything. Indeed it is a metaphor for modern existence. A tragedy
wrapped in comedy. The ending remains to be written.
November 2001
Rock Hill, South Carolina
I am walking down my driveway to get
the mail. I notice I am dragging my toes in the gravel about every
third step. My legs feel strange. I begin to run, and skid across
the gravel on my belly.
December 2001
Charlotte, North Carolina
I stand to leave a New Year’s
party. I am functionally crippled – only able to take very
slow baby steps.
January 2002
On a casual walk down the back forty,
I snag my toe and am walking on my lips. The following week I fall
down the hill on my way to my office.
February 2002
Dallas, Texas
Upon arising from dinner, I am able
only to do the baby steps thing again.
March 2002
I notice convulsive tremors in my
legs upon stretching in the morning. Hiking in the woods, I trip
and fall. Luckily, I manage to throw my machete on the way down.
April 2002
My feet will not stay on the pedals
of my tractor. They spasm violently. Something is wrong. I notice
I am typing poorly.
May 2002
I experience what is called bladder
and bowel urgency. Whoa!
June 2002
I fall down a flight of stairs while
carrying a suitcase. This is starting to be painful.
I am convinced I have neurological
problems. Duh. I call a friend who recommends a top neurologist.
July 3, 2002
I have a complete neurological exam
and blood work. Diagnosis – severe spasticity and some muscle
weakness; could be caused by three things:
1. Brain tumor
2. Multiple sclerosis
3. Spinal cord injury/compression
Number 3 does not seem possible.
I recall no trauma.
July 16, 2002
Got an MRI. Like being buried alive
while jackhammers wank on your skull.
July 17, 2002, 8:03 a.m.
The neurologist calls me. I have
severe cord compression at C4-C5 with T2 signal change. NEED SURGERY
ASAP. I ask if this is consistent with the symptoms – duh.
The answer, of course, is YES. He recommends a soft collar and steroid
injections, hoping the signal change is edema.
I pick up my MRI. It’s a no-brainer.
The cord appears non-existent at C4-C5. I start getting scared.
I am thinking puff and sip.
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The bright spot in the T2 image (right)
indicates edema or cord damage.
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July 18, 2002
I go to the neurologist, who blasts
me across the street to a neurosurgeon. Two of them are present.
They ask me if I have been in a car accident, fallen off of anything
or gotten cranked in the head. Not that I recall. I interpret this
as a bad sign. One tells me he has never seen an MRI like mine for
someone who wasn’t either dead or in a wheelchair. Puff and
sip.
We discuss options. There are none.
I need a fusion – anterior approach. Do the decompression,
iliac crest graft and anterior cervical plate. Two months of no
driving. I ask whose hardware would be used, an obviously strange
question. Synthes. I will be asked. I thank them and tell them I
will decide and let them know. As I leave, one of them sums my situation
up very succinctly. “You’re in deep *!%#,” he says.
I mumble this as I shuffle back to my car and my rendezvous with
destiny.
I take stock of my situation. If
I do nothing, I will get worse. If I fall or get rear-ended, I could
get real worse, real fast. Worse means quadriplegia. Bowel, bladder
and sexual dysfunction.
“Well?” my wife asks.
“I’m in deep *!%#,” I reply.
On the journey home, I am building
wheelchair ramps in my mind, buying lifetime supplies of Depends
and pounding Viagra as my fantasy harem reads books and files nails
in boredom. I am imagining steering with my lips. Puffing and sipping
the brakes and accelerator. It is a dark world of working heads
atop lifeless torsos. Brains perched on blobs of goo. I used to
like to play baseball. Maybe I can be a base.
July 19, 2002
Rock Hill, South Carolina
I hit the books and dial into the
Membership network. I need to know more. The thought of fusion nags
at me. Kinda like welding your car door shut if it squeaks. There
must be a better way. I make a list of spine surgeons, patients,
Engineers and Materials Scientists, Product Managers, Distributors
and salespeople. People I know and respect. I go through the list
and seek their counsel. I am totally blown away by their willingness
to help.
It dawns on me in a flash: I cannot
do a fusion. Burns all the bridges. If I live long enough, I will
have problems with all subsequent levels. There will be no turning
back. I will be a stick man. I need a disc. I look at the options.
I can design my own and do it as
a custom. This will take time I do not have, and despite my monster
ego, I am not convinced it would be any better than what already
exists. There are only two options outside of a few interesting
black market opportunities in places like India and the Eastern
Block. I review the literature and further consult the network.
I decide on the Bristol disc as opposed to the Bryan.
Both are beginning clinical trials
in the U.S. I would have to agree to be randomized. This is not
acceptable to me. I decide to go outside the U.S. The options are
England, where the developers are, and Switzerland, Belgium and
Australia, where clinical trials are underway.
England is out – The Brits
are on vacation; excuse me...holiday. I tell my mom this. She is
furious. I talk to the Australian surgeon, an impressive gentleman.
The network says he is an excellent surgeon. The logistics don’t
work out. My first two choices were based largely on the language
issue. I decide on Switzerland and Dr. François Porchet.
The network says he is an ace. I talk to Dr. Porchet. He looks at
my MRI and talks me through the procedure. It is a go. I have to
wire transfer a deposit to the hospital in order to be treated.
July 30, 2002
Shirley and I leave for Lausanne.
Surgery is scheduled for August 2, first thing in the morning. On
the plane, I am praying that a little kid doesn’t clock me
in the back of the head with a meal tray, and that the overhead
compartments are securely locked, ’cause things may shift during
flight.
July 31, 2002
Lausanne, Switzerland
André Steiner, the local
Medtronic Sofamor Danek rep, picks us up at the airport. His English
is excellent and he is great host. We stop at the hospital to drop
off the implants. This sounds like a good idea.
August 1, 2002
I arrive at the hospital and check
in. My wife, who speaks French, does all the details. I sit and
smile and nod like a goon tourist.
The hospital is as fine as the best
anywhere in the world. We are greeted at Neurosurgery by the day
nurse, Joelle. She is very professional, highly intelligent and
extremely charming. Her English is excellent. I am told all of the
things that are scheduled to occur both before and after surgery.
I am given a full neurological exam by the neurosurgeon on call.
His English is exemplary, as is his bedside manner. I almost knock
him down when he taps my knee. Spasticity is confirmed.
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Day nurse Joelle, sentenced to having to deal with the
Americans on her birthday.
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We meet Dr. Porchet. Both of us are
immediately impressed. He is extremely forthright and unpretentious.
It is obvious that he is passionate about what he does. He is the
perfect mix of wisdom and youth. I had read his CV, reviewed his
publications and spoken to people on three continents about him.
My experience was confirming all I had learned and the overwhelmingly
positive recommendations. I am in good hands.
He explains the details of surgery.
I ask the questions I have written down beforehand. I also need
to know the manufacturer of all the products being used. I will
be asked.
The risks are explained to me. Most
I had researched. I learned that the anterior approach carries a
small risk of loss of voice. I used to front a blues band and have
been known to wail a tune at cocktail hour, so the voice thing bothers
me. Puff, sip, grunt.
I explain that I am not the type
of person to stay in a hospital, that I want to go home (my hotel)
as soon as possible. Hospitals are for sick people.
I find out that today is the Swiss
equivalent of Independence Day, and also Joelle’s birthday.
We settle in for the night, watching
the fireworks through the hospital room window. I am wishing all
of my caregivers a safe and sober celebration.
August 2, 2002, 6:30 a.m.
I am up. Gotta take a shower with
some stuff that will chase the bugs away. I go back to the room.
I tell my wife “See you later” please not goodbye. See
you later, singing, dancing and all the parts and pieces in proper
working order.
We hit a traffic jam in the aisle
leading to the operating room. I have a good driver. She does the
equivalent of a honk and wheels through. Everyone is speaking French.
The anesthesiologist is there. A friendly face speaking English.
I had met him the day before when he asked me the 20 questions,
perhaps trying to decide if I can be put under without spontaneously
combusting or something equally embarrassing for all of us. After
all, I am representing my country.
Someone turns the lights off. I
mean all the lights.
Someone flips another switch. I am
awake. Amazingly cognizant. I am in recovery. There seem to be hundreds
of us, as if dragged from a battlefield. I cannot see them but can
feel their presence and hear the buzzing and snooshing and gurgling
of humans in repose. The person next to me moans painfully about
once every second. Like a metronome. Never skips a beat.
I look at the ceiling. I can see
no faces. All of a sudden I am scared. I remember the voice. I try
my scales out loud, as loud as I can, “La la la la la la la
la la.” I can’t tell if anything is coming out. I do it
again. A nurse comes over and speaks to me in French. “Can
you hear me?” I say. She looks confused. She leaves. I am dumb.
The moaning next to me continues as if timed by a Swiss watch. Another
nurse comes over. “Yes, we can hear you,” she says. In
English. I raise my hands and wiggle my fingers. I wiggle my toes.
They all work! My elation is boundless and indescribable. I want
to leap up and belt out a song. I want to dance with my wife. I
want to go home and play with my dogs and rassle with some kids.
Most of all I want to jump up and slap the hell out of the moaning
weenie beside me.
I am wheeled back to my room. I
reach for my wife. As pre-determined, she scrapes the bottom of
both my feet with her nails. Yes! I can feel it. Dr. Porchet has
already been up to show her the photos taken during surgery. All
went well. The decompression was completed and the implant placement
is perfect.
Dr. Porchet enters. His face tells
thousands of words, a good story. The last thing a post-op patient
wants to see is a nervous or tentative look on the face of his surgeon.
We review the pre- and post-op x-rays
and the intra-op photos. I am especially thrilled by the photo of
the retracted site with the implant in place. This is the money
shot for anyone in this industry. Shining metal bathed in a thin
layer of blood. Screw heads glistening under a gloss coat of serum.
The three of us gather around the camera and ohh and aah. Cool.
Very cool.
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Intra-op photo of implant in place.
It doesn't get much better than this.
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Three hours after surgery, I have zero pain. I take a walk
down
the hall in a
soft collar.
Three hours after surgery, I have
zero pain. I take a walk down the hall in a soft collar. Everything
seems to be working. I want to dance but there are no willing partners.
No one wants to be responsible for my return to the operating room.
I have an excellent meal in my room.
The food in the hospital is as good as in many fine restaurants
in the States. Maybe this surgery stuff ain’t so bad.
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Post-op conference with François Porchet and André
Steiner.
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August 3, 2002
The day after surgery, I want to
go home. By noon, I am released with a soft collar and a scrip for
anti-inflammatories and mild painkillers. We go about life as normal.
Out to lunch and dinner. Some minor discomfort sleeping, but that
is all.
August 4, 2002
Sleep all day. No pain, just tired.
August 5, 2002
Walked Lausanne for six hours. No
soft collar. I have only minor discomfort due to what I am told
is pseudo pain that mimics radiculopathy. Like a crick in the neck
and shoulder.
August 6, 2002
I return to the hospital. Get a
post-op x-ray and have my stitches removed by two exceptionally
charming and talented Swiss nurses. Two! Somehow I think I should
find something bad or painful about the entire experience, but at
the moment it is difficult.
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Post-op x-ray. Placement and size look excellent.
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August 8, 2002
Rock Hill, South Carolina
I am back in the office working.
Still only some minor discomfort, especially when typing. Some numbness
at the site. I am back to normal everyday activities.
August 17, 2002
Pipestem, West Virginia
Two weeks and one day after surgery
I play 18 holes of golf. My golf game is as bad as ever, but no
worse. I get creamed in a family tournament.
For many of
us in the
industry, surgery remains our biggest fear.
As I write this and reflect on the experience, it is difficult
to say it was anything but pleasurable. This is the ultimate irony.
For many of us in the industry, surgery remains our biggest fear.
It is also obvious that knowing a good deal about something doesn’t
make it any easier; in fact, it only begs more questions. At this
point I can easily say that compared to fusion, this treatment seems
to be miraculous. Oddly, the entire ordeal, from the onset of symptoms
until well after surgery, was accompanied by virtually no pain or
discomfort. Today, the only time my neck bothers me is when I am either
hungry or thirsty, or when chores need to be done. I suspect this
will be the case for some time. There
really is no rehab to be done. It may be a year or more until I
know whether I will regain the function I have lost. I am obsessed
with keeping my range of motion, to avoid any possibility of spontaneous
fusion. I will follow up with a surgeon in the U.S.
Whether I have made the right decision
may not be apparent for years, but for the time being, I am the
poster boy for disc replacement. When I reflect on the horror of
what might have been, I take great relief in the fact that the only
puffin’ and sippin’ I’ll be doing is on a fine cigar
and a cool martini. Is this a great industry or what?
About the author
John Engelhardt is Chief Executive Officer of Knowledge Enterprises,
Inc., a strategic services firm solely focused on the global Orthopaedic
markets. He holds nineteen patents for Orthopaedic technologies
and has published numerous articles on medical device technologies
and trends. He can be reached at john@orthoworld.com.
OrthoKnow is available exclusively to Members of
The Institute for Orthopaedics. To learn more about
the benefits of Membership or to sign up today,
please contact Ramonde Smith by e-mail, ramonde@orthoworld.com
or by phone at 440-543-2101. |
