Hank's Brain Blog

A week later...

2009-07-02T00:40:00.000-07:00

Brain Blog 2.0 (#3) 2009

Greetings from Brno :-)

It's been a week and some days since the installation of my new equipment, and the shakedown cruise has yielded mixed results. The new batteries are STRONG; and that's a source of some side effects such as electric shocks when switched on, and during some movements. Also, the tuning isn't quite optimized, as the balance between effective relief and side effects is still a bit off. But overall, not bad. I feel like a 1978 Mercedes diesel that just got a tune-up: ready for another 100,000 miles (nevermind the rough ride, worn tires, and slow starting on cold mornings).

So tomorrow it's back to the hospital for another tuning session, immediately followed by the neurosurgery outpatient clinic for removal of the stitches. I'll add the new scars to my collection, which BTW will be the subject of an upcoming blog ;-)

The total medical care includes 8 days in hospital, approx 18 doctor consultations, major neurosurgery, equipment (approx value $12,000), and 5 outpatient visits.

All for a co-pay of 486kc (about $26) and monthly insurance of 367kc (about $20).

Universal healthcare anyone?

Tweets fron the hospital

2009-06-26T03:11:00.000-07:00

Brain Blog 2.0 (#2)

As mentioned before, without internet access in the hospital, I used twitter to post sms from my mobile phone. Now that I'm out, here's the record.

Thx for following.

Day1

Insurance copay is $3/day. Machine accepts only coins!

OMG-liver soup for dinner. Yuk! Can it get worse? I've got 10 days...

My seven roommates are a fairly moribund bunch, but I've already got 'em laughing:-). I'm starting to channel R.P. McMurphy:-D

Day2.

I went to bed late, hoping to sleep better. It didn't work. So much snoring - sounded like a jackhammer demolition crew!

Meat soup for breakfast? No thx:-/. So another $3 copay in the machine today. I wonder what the average patient bill is on "House"?

Day3

Slept better last nite. My roommates say I snore the worst. I said it doesn't matter to me- I'm already asleep by then!:-)

Moved to Neurosurgery building, and time travelled from the 50's to the 90's. Also just learned Czech word for suppository. :-(

Nice digs here- modern, clean, and a fitness room too which I utilized:-). But I don't like the guyz smoking in the bathroom:-@.

Day4

Looks like a fine day for an operation. Docs came by and said all systems are 'GO'. So let's do this thing.:-)

It's done! Some trouble removing old batteries; had to locate and cut old suchers. Some pain as they used only local anasthetic.

The surgeons and I swapped Czech jokes - mine were funnier:-D. The new batteries are running a little strong; will need tuning.

OK I'm ready to go home. Are they really gonna keep me in here for 7 more days? Maybe I'll take the boyz fishing. :-D

Lights out at 21:30. It's been a great day - I'm in pain, but it's a small price for another 5 years of function:-). Dobrou noc.

Day5

Feeling better now; must have slept wrong on the wounds. I'll definitely survive; well that is if the food doesn't kill me:-D.

Day6

Upgade! Slept ok and today moved from post-op to comfortable double room with a table & chair! Doc sez wounds look good:-)

Parallel universe? Haven't seen a fresh fruit or vegetable in 7 days. No matter; they do sell cigarettes... :-O

Day7

I'm sleeping well and dreaming about real food... Today the doc & tech should tune my new devices-sort of like a smog test?

Doc sez wounds are healing. If tuning goes ok, I could be released tomorrow! Today got huge delivery of food from friends:-)

Day8

Fresh fruit for breakfast! compliments of Petra:-). More tuning of devices today, and if all goes well: I'm OUTTAHERE :-D

That's it! I'm cleared for release-it's been a very interesting and successful stay here. Next post should be at blogspot.com :-)

Brain Blog is Back!

2009-06-18T21:40:00.000-07:00

Brain Blog 2.0 (#1) 2009

As many of you know, I've got a brain defect. Now that might be apparent to some, and perhaps news to others. To solve the problem, I had a system installed in my body 5 years ago called "Deep Brain Stimulation" (DBS) which allows me to function like a normal human being (again debtable). The DBS is powered by batteries embedded in my chest, which are to be replaced on monday after 5 years of yeoman duty. So, for this grand occasion, I've dusted off the original brain blogs from my surgery in 2004, and intiated a new brain blog.

Call it brain blog redux. You can follow it at www.hanksbrainblog.blogspot.com

The procedure will take place Monday at hospital u Svaty Anny here in Brno. I'm doubtful about having reliable internet access, so you can also follow the action with up-to-the-minute reports via Twitter from radiodog88. I may even convince the surgeon to tweet will I'm under sedation :-)

Today I'm checking into the hospital for an expected 10-day stay, and look forward to once again sharing the experience with you. So go back and read the originals, and let's renew our journey.

Until the next post.

Ciao,

Hank

Brain Blog 2004 #6

2004-08-02T11:00:00.000-07:00

HANK'S BRAIN BLOG (#6)

WELCOME

Hello and welcome back to Hank¹s brain blog; the place where I try to

retain my sanity by sharing what¹s tumbling out of my newly hard-wired cranium.

It¹s now been 5 weeks since the ³big dig² and my recovery is pretty

much on pace, although it¹s never fast enough for me. Many of the temporary

side effects of the surgery are clearing up, I¹m starting to feel less pain

and more stamina. In fact this past sunday Lisa Carter (visiting SD from

CHI with hubby HK) and I enjoyed a brisk 3 hour hike on the beach at Del

Mar down to Torrey Pines Reserve and back. Can the Sierra Nevada be far

behind?

CRAZY?

I ask myself daily was I always this crazy? Do people who survive

life-changing experiences really have changed lives? My life hasn¹t

especially changed, but I suspect that I¹m different nonetheless. For

example: did I always have such a low regard for red lights in left turn

lanes? I mean what¹s the point of just sitting there when there¹s no

oncoming traffic? Civil disobedience has long been a staple of my makeup,

but it used to be based on principle, not convenience. And then there¹s

times when I¹m just plain out-of-it. Yesterday at the California Pizza

restaurant I sat down at the bar, ordered a salad, and proceeded to the

rest room. I walked in to find no urinal, so proceeded to do my biz in the

stall, wash my hands, and exit, when I came upon a very surprised woman attempting

to enter. That¹s when I finally realized it was the womens¹ rest room.

I did however, recover nicely by assuring her that I had completed a thorough

inspection, and that the facilities were top notch. Top Notch! Can you

get arrested for something like that? Am I a hazard to my ownself? Or have I

always been?

A TOAST!

Saturday night was the first social occasion since my stimulators were

activated, and the public debut of my steady right hand. Eating in a

social situation and holding a filled glass of liquid in the company of others

has always struck terror into the heart of us tremor sufferers. So at dinner

with Howie, Lisa, Laurie, Doc Delsman, and Vinnie joining me, I proposed

my first ever (sober, that is) steady-handed toast to good health. Oh what

a feeling! That¹s been on my wish list for many years, and I intend to

enjoy it often from here on. In the Republic of Georgia, where I visited a

number of times building radio stations in the late Œ90s, the Georgians go

for 3 hour meals at which they designate an official toastmaster to stand up

every 5 minutes or so and launch yet another drunken toast to one of your friends

or relatives. Not to worry if you run out of candidates, they¹ll run

through your entire list several times without blinking. I must have consumed

a lifetime worth of awful orange soda (and they gallons of wine, brandy,

grappa, and vodka) in my 3 trips to Tbislisi. I¹d love to go back and

offer a toast, but those guy must be dead by now...It reminds me of a similar

drinking ritual we used to participate in on a weekly basis back in

Milwaukee. We called it bowling.

THE SYSTEM

My newly installed deep brain stimulation system was turned on for the

first time last week and the results so far are mixed. After several sessions

of programming and re-programming, my right side seems to be much improved

without substantial side effects. The left side however, is a different

story. We tried and tried to set the power and amplitude high enough

to remedy the tremor, but each time encountered side effects, most notably

electric shocks in my arm and hand. The surgical nurse and I agreed to

"give it a week" on low power and try again. So, I¹ve got real relief on

my right side, and temporary partial relief on my left with still unanswered

questions. Meantime I¹m enjoying the little victories as they happen,

like making toasts and using chopsticks!

That¹s all for now.

Cheers,

Hank

Brain Blog 2004 #5

2004-07-22T23:00:00.000-07:00

HANK¹S BRAIN BLOG (#5)

Greetings and welcome to Hanks¹ Brain Blog for July 22.

RECOVERY

My recovery from the procedures is progressing (albeit much slower than

I'd prefer) and I¹m track to fully regaining my faculties. While some might

argue that I¹ve never had full control of my faculties, it sucks being

an invalid, and I¹m more than ready to be myself, my whole self and nothing

but myself again. Meantime, the doctor this week reminded me that the pain

and other side effects I¹m suffering are the result of major brain surgery

and that I should take it easy and get better. Well, OK.

BEFORE & AFTER

When I was a 98 lb. freshman in high school on the football team, I saw

an advert in an Archie & Jughead comic book for a Charles Atlas bodybuilding

offer.

The ad was the classic 98 lb. weakling getting sand kicked in his face

by a big bully at the beach. The weakling took the course, built up his muscles,

returned to the beach, kicked the bully¹s ass, and got the bikini-clad

babe.

I never believed the ad, nor that I could grow muscles; and I still don¹t

have much for muscles, but in the 35 years since, I¹ve gained 100lbs.;

does that count?

Anyway, when I was in the operating room on June 29 with my brain opened

up and the wires implanted, the surgeons hooked up a temporary stimulation

device to perform the "Spiral Test". They asked me to draw a spiral

(yes I was awake during the whole procedure) on a piece of paper with my left

hand.

Then they powered up the temporary stimulator and asked me to repeat

the action. (ergo a before-and after test). The results were amazing!

The first image looked like a snowflake from the tremors;, imagine that hand

holding a cup of coffee. The second after the dbs activation was a beautiful spiral!

Well, if this thing turns out like the second image, I look forward to joining each

and every one of you for a cup of coffee and some catching up...

NEXT STEP

The next step in my process is to visit the doctor next Tuesday for a

check-up and the first attempt to power up the 2 stimulation devices

implanted in my chest. Then we¹ll go about the process of programming

them to optimum effectiveness, which is expected to require several visits.

Meantime, I¹ve got orders to take it easy. Which also means my long

anticipated trip to Athens for the summer olympic games is cancelled.

I'm told to avoid metal detectors because they can interfere with my stimulation

devices; you suppose I¹d have seen a few of those at the olympics in Athens? So, it¹s

back to being an ornery invalid and healing one day at a time: Pacific Daylight

Time...

Thanks for your attention and interest.

Regards,

Hank

Brain Blog 2004 #4

2004-07-15T20:00:00.000-07:00

HANK'S BRAIN BLOG 2004 #4

Hello everyone and greetings from San Diego. I

apologize for being out of touch for awhile, but I'm

back online now and happy to be in your inbox.

RECOVERY

My recovery has been a rocky road as I've been dealing

with all the pain and incapacitation one expects from

being screwed, drilled, cut, tunneled, inserted, and

plugged then being stitched and stapled 32 times. In

addition I'm in the process of overcoming temporary

side effects such as dizziness, nausea, imbalance,

sensitivity to light and moving objects, inability to

concentrate and focus, memory lapse, and overall

lethargy. The good news is that these are indeed

temporary and should subside over the coming weeks.

OTHER SIDE EFFECTS?

I've also noted the appearance of other possible side

effects, including what seems to be the development of

a rather large soft spot in my distinctly hardened

exterior. After watching "To Kill a Mockingbird" I

found myself in tears at the ending! Certainly this

had to be an anamoly, except that it happened again

when viewing "Field of Dreams". Could it be permanent?

Does this mean I'll now be nice to children and small

animals?

What else could be different? Wheaties instead of

Grape Nuts? MaryAnn instead of Ginger? Hey, maybe I'll

make some open lay-ups now!?! One thing I'm certain

hasn't changed is my political bent: W has still got

to go!

Another side effect has been the severe trauma caused

by a whole week in front of a television set; is it

normal to witness 100 murders a week? (not to mention

thousands of mind-numbing commercials). Thank heavens

for the Science Channel!! And also kudos to my locally

owned and operated neighborhood video store, who've

kept me stocked in archival classics, foreign titles,

indies, and documentaries to retain my sanity.

BACK IN THE SADDLE

I visited the doctor this week, got the staples

removed from my head, and received the all clear to

return to work (ever so slowly). So tommorow it's back

in the saddle again for a short ride, and I'm very

glad to be climbing back on that horse. Then the next

milestone is scheduled for July 27 when they activate

my stimulators. Until then, it's a slow but sure road

to recovery. Thanks for reading this and I'll talk to

you soon.

Cheers,

Hank

Brain Blog 2004 #3

2004-07-04T13:40:00.000-07:00

Hank's brain blog (#3)

I'm Back! But just barely. I returned home from

Scripps hospital today, and wanted to get out a

mesage to everyone.. The first surgery Tuesday to

implant the wires in my head went very well and the

activation test of a temporary stimulation device

proved successful. They screwed a sterotactic tooling

device into my skull, drilled 2 holes in my head just

behind the hairline, and implanted wires in each hole.

Due to my good health (and the doctor's vacation

plans) they offered to "double-up" and do my second

phase during this visit. In spite of nausea and

vomiting from an intolerance of the anasthesia and

narcotics, I decided to tough it out and go for the

package deal. They subsequently on thursday installed

the dual stimulation devices in my chest and tunneled

the connecting wires under my scalp, then down behind

my ears and neck. That procedure also went very well,

and I should be ready for activatating the devices in

about 30 days.

Due to my weak stomach and the back-to-back surgeries,

I actually didn't eat anything between Monday evening

and Friday morning. (The brain surgery diet?). In

addition, I refused all pain medication, so it's been

a rough week. The good news is that I'm back home,

both surgeries are completed, and now it's just a

matter of recuperating and starting to eat once again.

Thank you all for your support and kind words; they

were very helpful to me during the ordeal.

I intend to provide you with continued updates as

practical and look forward to staying in touch.

Until then, cheers!

Hank

Brain Blog 2004 #2

2004-06-30T09:52:00.000-07:00

2004

HANK'S BRAIN BLOG (#2)

TODAY'S ACTIVITIES (The day before surgery)

Just another day at the office. I went to the La Jolla YMCA at noon for

some basketball and a brief workout in the weight room. That'll be the last

of both those activities for several months. My sister Mary Shovelton is here

for the week to be my designated caregiver. We¹ll eat dinner out tonite

joined by her daughter Sarah (Cheesecake Factory for some Key Lime cheesecake!),

then over to my place where Sarah will cut off all my hair. (she's an

up-and-coming beautician, but will act like a barber for this one) I

haven¹t had a crew cut since the 5th grade; but at age 50 I¹m delighted

to say it¹ll grow back! Bedtime is 10PM in advance of a 4AM wake-up.

A GREAT AUDIENCE

I¹ve continued to receive many supportive and humorous messages from

all of you. Thank you very much. My mom Marge Loeser reminded me of my 2nd visit

to a hospital; she was travelling by train from Milwaukee to Denver in 1956

with 7 children under 11 years old. I was the 2 year old who got into

her purse and swallowed a whole bottle of baby aspirin. They had to stop

the train and transport me to a hospital somewhere in rural Nebraska, where

I got pumped, and we were back on our way...

Several more readers had suggestions for what the surgeons may find when

they look inside my head including:

* a Green Bay Packer logo

* Elvis

* yips, shanks, chops, slices, hooks, tops, chillidips, etc.

Also, I received the attached photo which may have indeed forseen the

head protection gear I¹ll be wearing post surgery...

THE PROCESS

Tommorow is the big day for the big drill, so the next blog message is

scheduled for Wednesday morning PST. I'm looking forward to a successful

operation and will talk to you on the other side.

Cheers,

Hank

Brain Blog 2004 #1

2004-06-13T22:00:00.000-07:00

2004

HANK’S BRAIN BLOG (#1)

Greetings to everyone from San Diego and welcome to Hank’s Brain Blog; a running web log account of my upcoming brain surgery.
If you’d like to be pulled from the list, just let me know.

THE BACKGROUND
For as long as I can remember, my hands have shaken. As a child, teenager, young adult, and now as an older adult I’ve had to deal with tremors in my hands & arms as well as my legs and head. The official name for the condition is “Essential Tremor” or sometimes “Familial Tremor” because the affliction is often times hereditary. Essential tremor is the result of a brain disorder in which electric signals from the thalmus to the body’s muscles are somehow distorted. The cause is unknown, and there is no cure.

Over the years I’ve tried to conceal it, but not always successfully. Good friends and colleagues have understood when I disclosed it. Others have not and I’m also certain there’s hundreds if not thousands of people who’ve noticed my tremors but never said anything. They likely came away conjuring up dreadful scenarios of drug abuse or alchoholism. Well, they’re partially right: I am an alchoholic. Although tremors are a side effect of alchohol abuse, essential tremor may have been a partial cause of my alchoholism. It turns out that a significant percentage of essential tremor victims become alchoholics in part because alchohol is the most effective temporary remedy for essential tremor. Anyway, I’ve been sober for 19 years and proud of it, but I’ve still got the shakes.

In 1990 I first visited a neurologist and received the diagnosis of essential tremor. Since then I’ve tried just about every pharmaceutical remedy known to modern medical science, with little success; they made me either drowsy, or goofy, or nauseous, or all of the above. I most recently stopped taking something called Oxazapam after a 9 year regimen! Other ideas such as hypnosis, accupuncture, etc. have not proven successful.

THE PROCEDURE
To you doctors in the audience, please forgive any and all medical misinformation contained herein. There are 2 main surgical remedies for essential tremor:

Thalamotomy - (Also known as the Michael J. Fox procedure) Surgeons drill a hole (or 2) in your skull, locate the brain cells that cause the tremor, and destroy them.
Thalamic Stimulation – Surgeons drill the holes, locate the brain cells in question, and implant electrodes which are then connected to stimulation devices implanted under the collar bones.

Because the Thalamotomy has a higher risk factor for side effects and is permanent, I’ve chosen what’s behind door #2. Otherwise known as Deep Brain Stimulation (DBS), this procedure is highly effective in treating essential tremor. Of course the flipside is I’ll be a partial cyborg with sophisticated electronics hardwired into my brain; now I can look forward to fearing microwave ovens and airport security. One wag suggested my arms may go up and down when I click the garage door opener...

THE SCHEDULE
6/25/04 Preoperative exams and testing
6/29/04 electrode implants
7/20/04 stimulation device implants
TBA stimulation device programming

THE MESSAGE
So with exactly one week to go before they start drilling, I’m beginning this blog. I’ll endeavor to keep you informed as I go with perhaps not-quite-daily updates on the entire experience. Then hopefully months down the road you’ll receive from time to time an update on how I’ve experienced some task or event with steady hands and the feeling of joy that will certainly accompany it. Or better yet, I’ll experience it in your company, and we’ll share that along with other memorable moments that make up our lives together.

Cheers!
Hank