They don't mess around at The Mayo Clinic.
Early this morning, I had testing and screening done by a neurological resident, Dr. Mark Cooper. That was immediately followed by a consultation with Dr. Cooper and the vice head of the neurology department, Dr. Joseph Matsumoto. Their diagnosis is grade 3.5-4 Essential Tremor (4 is as high as it goes), unresponsive to pharmacological treatment. Dr. Matsumoto informed us that I am indeed a prime candidate for surgery. This is the best news EVER!
The recommended procedure is called Deep Brain Stimulus (DBS), and will be performed here at Mayo. A tiny device (perhaps two devices) is/are implanted in my alleged brain, with a battery and switch inserted in my upper chest, near the shoulder. This is a newer, safer, and more effective surgery than the one with which I was familiar, wherein brain cells are destroyed to eliminate the tremor.
God bless the Energizer Bunny.
The only thing in doubt, I think, is the timeline. I don't think the surgery will take place on this visit. Dr Matsumoto must clear the procedure with the Neurosurgery Committee (about 30 doctors who meet weekly), and scheduling must be done. I keep telling everyone in sight that I'm ready NOW, dammit! The hotel folks are probably tired of hearing that. I'll know more later.
I next had blood drawn for a chemistry workup. Then a visit with Speech Pathologists Drs. Kimberly Bocian and Edythe Strand. "Why speech pathology?", I hear you ask. It seems that the balancing act inherent in this surgery is to mitigate the tremor without negatively impacting my ability to speak. Yeah, even from here, I can hear all the jokes about "No great loss there." At any rate, the areas controlling these functions are next-door neighbors in the brain; so today's testing established a baseline for my normal speech functions.
My last appointment for the day was an MRI to make sure that there are no tumors, aneurysms, moths or other abnormalities in my li'l puddin' head. I'm done for the day, and Bobbi and I might just have to have a nice dinner to celebrate our suddenly brighter future.
Tune in tomorrow; I have a consultation scheduled with Dr. Lee, the neurosurgeon who'll perform the operation. I can't wait!
Thanks for your interest,
Tom
Tuesday, February 27, 2007
Monday, February 26, 2007
Day One - Road Trip!
I wanted to leave at 7:00 AM; that was the plan. There had been a nasty storm across Iowa on Sunday, and I feared some slow going. I just wanted to get an early start as a hedge against weather related delays.
It didn't happen, though.
We hit the road at about 7:30, which wasn't too far off the mark, but while buzzing along US 71 just south of Lamar, MO (about 40 miles from home), I realized I had left the folder with my admissions papers and medical records on my dresser. Guh. Remembered the iPod and camera and Cheez-Its and beef sticks but forgot THE SINGLE MOST IMPORTANT THING! Crap! Crapcrapcrap!
As I turned around at the next opportunity, I'm thinking that this little faux pas will mean that we'll be pulling in to Rochester at dark-thirty. But a frantic call was placed to Marge, our angel of a friend and neighbor, and she agreed to burglarize the house, grab the folder, and meet us in Carthage. The quick transfer that occurred there, on a deserted Arby's parking lot, looked for all the world like a drug deal. But we got the folder, and only lost about an hour's time. Everyone should be so lucky as to have a Marge. You can't have this one, though.
The rest of the drive was remarkably uneventful. There was snow on the ground beginning just north of Kansas City, and its depth increased (and the temperature decreased) in direct proportion to the increasing latitude. All of I-35, however, was clean and dry. In central and northern Iowa, there was sobering evidence of the earlier storm's severity; dozens of vehicles off the highway and undriveable - a few resting on some part other than the wheels. I'm REALLY glad we made this trip today instead of yesterday. Because of our stuttering start, there would be no stopping for a relaxing meal in Des Moines. But we did stop for a nice roadside picnic lunch a bit later, just north of Ames...
It didn't happen, though.
We hit the road at about 7:30, which wasn't too far off the mark, but while buzzing along US 71 just south of Lamar, MO (about 40 miles from home), I realized I had left the folder with my admissions papers and medical records on my dresser. Guh. Remembered the iPod and camera and Cheez-Its and beef sticks but forgot THE SINGLE MOST IMPORTANT THING! Crap! Crapcrapcrap!
As I turned around at the next opportunity, I'm thinking that this little faux pas will mean that we'll be pulling in to Rochester at dark-thirty. But a frantic call was placed to Marge, our angel of a friend and neighbor, and she agreed to burglarize the house, grab the folder, and meet us in Carthage. The quick transfer that occurred there, on a deserted Arby's parking lot, looked for all the world like a drug deal. But we got the folder, and only lost about an hour's time. Everyone should be so lucky as to have a Marge. You can't have this one, though.
The rest of the drive was remarkably uneventful. There was snow on the ground beginning just north of Kansas City, and its depth increased (and the temperature decreased) in direct proportion to the increasing latitude. All of I-35, however, was clean and dry. In central and northern Iowa, there was sobering evidence of the earlier storm's severity; dozens of vehicles off the highway and undriveable - a few resting on some part other than the wheels. I'm REALLY glad we made this trip today instead of yesterday. Because of our stuttering start, there would be no stopping for a relaxing meal in Des Moines. But we did stop for a nice roadside picnic lunch a bit later, just north of Ames...
Incidentally, XM radio ROCKS on a long trip.
Arrived in Rochester at 6:00 and did a little exploring - the downtown area is honeycombed with a pedestrian "subway" that connects the medical facilities with several of the hotels, including this one. It's full of restaurants, retail shops, (including an inordinate number of jewelry stores!), gift shops and such. Found a bar, had a beer, had a sandwich, and cruised on back to the room.
The medical miracle lifts off at 7:00 tomorrow morning, and I'm still seeing highway coming at me, so...it's a night.
Thanks for your interest,
Tom
Saturday, February 24, 2007
Episode IV - A New Hope
Well, hi there.
I think we all know each other, so I'll dispense with the formalities.
You, as one of the "chosen few", will be able to follow my big adventure - a junket to the Mayo Clinic in Rochester, MN. The purpose of the trip is to explore the possibility that something can be done to repair or effectively treat my ET (that's short for Benign Familial Essential Gross Motor Tremor), a condition that's a progressive but non-fatal cousin to Parkinson's disease.
Those of you close to me know that what was once merely an annoyance has progressed to the point of fairly serious debilitation and has become a source of frustration for me. Logically and emotionally extended, it's also become a source of frustration for those of you close to me. I want it to go away. YOU want it to go away. It occupies WAY too much of my time and thought.
The physical reality is that I have a difficult time performing tasks that should be taken for granted. I was blessed at birth with a fair amount of athleticism and grace, but my movements nowadays can best be described as herky-jerky. It has become difficult and embarrasing to eat in public, and some dishes are well nigh impossible (I'd have soup on the ceiling!). I must drink with two hands. I can no longer play my treasured musical instruments (which I once did professionally). I can no longer build nor fly my R/C airplanes or put a model railroad locomotive on the track. I cannot write. I cannot tee up a golf ball (and my putting has become quite the show - talk about the "yips"...). I have difficulty applying toothpaste to a brush (once that's accomplished, however, I don't need an electric toothbrush!). The list goes on.
And don't get me started on the occasional insensitive boob who asks, "What're YOU so nervous about?" Ha. Yeah, good one.
All of this may sound like a bunch of whiny complaints. Perhaps they are, but I'd like to think that I can regain these small skills. I'd give my right arm to be able to use my right hand.
I've seen multiple local neurologists seeking treatment for the condition. Each has basically trotted out the same "cookbook medicine" handful of pharmaceuticals well documented in the literature as treatment for ET. I needn't bore you with these. Suffice it to say that their effect has been at best marginal, and these doctors eventually threw up their hands. I finally visited with a certain neurologist, Dr. Ahmed Robbie, who realizes the seat of all medical knowledge is NOT Joplin, Missouri. After the usual drug suspects again produced poor results, he told me that I needed "world-class" treatment, and offerred referrals to Johns Hopkins, Barnes, UCLA, or Mayo. I chose Mayo because of relative proximity, reputation, and personal experience.
I'm hopeful; I think that this is my best chance to markedly improve the quality of my life, so I intend to chronicle this trip. And you, dear reader and friend or relation, are invited along for the ride.
Thanks for your interest,
Tom
I think we all know each other, so I'll dispense with the formalities.
You, as one of the "chosen few", will be able to follow my big adventure - a junket to the Mayo Clinic in Rochester, MN. The purpose of the trip is to explore the possibility that something can be done to repair or effectively treat my ET (that's short for Benign Familial Essential Gross Motor Tremor), a condition that's a progressive but non-fatal cousin to Parkinson's disease.
Those of you close to me know that what was once merely an annoyance has progressed to the point of fairly serious debilitation and has become a source of frustration for me. Logically and emotionally extended, it's also become a source of frustration for those of you close to me. I want it to go away. YOU want it to go away. It occupies WAY too much of my time and thought.
The physical reality is that I have a difficult time performing tasks that should be taken for granted. I was blessed at birth with a fair amount of athleticism and grace, but my movements nowadays can best be described as herky-jerky. It has become difficult and embarrasing to eat in public, and some dishes are well nigh impossible (I'd have soup on the ceiling!). I must drink with two hands. I can no longer play my treasured musical instruments (which I once did professionally). I can no longer build nor fly my R/C airplanes or put a model railroad locomotive on the track. I cannot write. I cannot tee up a golf ball (and my putting has become quite the show - talk about the "yips"...). I have difficulty applying toothpaste to a brush (once that's accomplished, however, I don't need an electric toothbrush!). The list goes on.
And don't get me started on the occasional insensitive boob who asks, "What're YOU so nervous about?" Ha. Yeah, good one.
All of this may sound like a bunch of whiny complaints. Perhaps they are, but I'd like to think that I can regain these small skills. I'd give my right arm to be able to use my right hand.
I've seen multiple local neurologists seeking treatment for the condition. Each has basically trotted out the same "cookbook medicine" handful of pharmaceuticals well documented in the literature as treatment for ET. I needn't bore you with these. Suffice it to say that their effect has been at best marginal, and these doctors eventually threw up their hands. I finally visited with a certain neurologist, Dr. Ahmed Robbie, who realizes the seat of all medical knowledge is NOT Joplin, Missouri. After the usual drug suspects again produced poor results, he told me that I needed "world-class" treatment, and offerred referrals to Johns Hopkins, Barnes, UCLA, or Mayo. I chose Mayo because of relative proximity, reputation, and personal experience.
I'm hopeful; I think that this is my best chance to markedly improve the quality of my life, so I intend to chronicle this trip. And you, dear reader and friend or relation, are invited along for the ride.
Thanks for your interest,
Tom
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