Sunday 12/6: My
brother Mike drops Rhonda and I off at our hotel next to the clinic. I have an MEG test first thing tomorrow
morning and I am instructed to sleep as little as possible to aid in the test.
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| All Wired |
Monday, 12/7: Four hours of sleep later, we head to the
clinic for the testing to begin. The MEG
process is pretty interesting. The
technician applies 20 some electrodes to me, than uses a device to map out my
head (see Rhonda’s blog post “Day One At Cleveland Clinic” for more details and videos). After an hour of lying in a scanner they send
us to our next destination. We walk
around this GIANT complex like mice in a maze looking for building M. Here it is, and we head up to M60, the Adult
Epilepsy unit. I lay down in room 9 and
another technician comes in and adds an additional series of electrodes on me. I am now sporting about 40 wires glued to my
head all wrapped up like a giant dread-lock which is plugged into an electronic
leash that becomes part of my cyborg like self. Trying to find a comfortable position while
being so wired up is nearly impossible.
Rhonda and I watch TV. Bedtime
arrives and my meds are reduced. Between
the wires and change in meds I am unable to fall asleep.
Tuesday, 12/8: I watch the night sky turn to day, as I lay
trapped in my bed, going insane from lack of sleep. At 7:00 a nurse asks if I would like to wash
up and change my clothes. She escorts me
to the bathroom with towels and a new gown. I am never allowed to get out of
bed without a nurse present, talk about lack of privacy; I clean myself up and
am escorted back to my bed. 7:30 a
technician comes in and adds another dozen electrodes to my head. Where did she
find the space? 8:00 another nurse,
Abbey comes in and sits next to my bed with a syringe filled with Neurolite, a radioactive
dye. This will be injected into me at the
first sign of seizure activity, hoping to concentrate in the “hot” areas of my
brain. I am having very little seizure
activity, even with no sleep and all my meds being pulled from me. Finally, after several hours of small talk
with Abbey I feel my hand start to burn, and they shoot the glowing green
syringe into my veins. Staring at the ceiling
on a long gurney ride to the imaging department, I lie here wondering what the long-term
side effects of this chemical inside me will do (although I am told it is
harmless). To make matters worse the
withdrawal effects of my regular daily dose of meds is starting to kick
in. Lots of images are taken of my
brain, before I watch that same ceiling pass over my head as the gurney heads
back to M60 room 9. I get more and more
uncomfortable as the evening approaches.
Lying in bed I watch the walls start pulsing and every little sound
turns into a thousand notes of chaos.
Another sleepless night. |
| Georges Melies "Trip to the Moon" |
Wednesday, 12/9: 3:30
AM I lay here feeling as bad as I have ever felt in my life. Brain is glitchy as if the world around me is
part of a 1902 Georges Melies film. I
see trails following everything that moves, and some that are standing
still. Walls continue to pulse, I close
my eyes and the darkness turns into thousands of indescribable horrific
images. Ears are ringing; through the
ringing I hear every sound in the universe at once. Body aches all over, I feel like a withdrawing
junky as described in a William Burroughs’ novel. These feelings are multiplying with each
passing moment, continuing, continuing, and continuing. 4:10 PM: my left arm feels like it is on
fire, my hand starts twitching uncontrollably.
Rhonda hits the emergency button and the room fills up with nurses. One of them asks “Do you know where you
are?” “Cleveland Clinic” I reply, my
hand spasms more violently. My arm lifts
up, pain intensifying. The nurse says
“Explain what you are feeling”.
“Squeezing, burning, now it is moving into my right hand.” My right hand is now imitating my left. The nurses keep asking me questions and I am
somehow responding correctly. “The pain
and burning is moving into my head.” I
start to twist, every muscle in my body tensing up I hear myself groan loudly –
BLACK. 4:55 PM: “Dan, Dan can you hear
me?” Rhonda asks as she caresses my arm.
“Yes” I say.
“You had a tonic-clonic,
worst one, lasted 8 or 9 minutes, another 30 or so in postictal.” “I feel like I was trampled by a heard of
elephants.” Dazed and confused, I lie in
bed, nurses administering drugs, bringing the levels back to where they were
before I entered this place. Sleep,
finally, drifting in and out, Rhonda by my side.
Thursday, 12/10:
Throughout the night, nurses wake me up for vital and evaluation
tests. Another technician comes in to
adjust some of my wires. Even with all
of this activity, I feel blissfully rested as morning arrives. Breakfast, TV, lunch, more TV, food is finally
enjoyable again. Rhonda and I sit here
anxiously waiting. Finally, Doctor Najm
arrives to discuss what the tests showed. *
Neurosurgeon Doctor Gonzales is with him. Epilepsy is a tricky thing. Every case is
somewhat unique. My situation is extra
unusual, due to the tumor, scarring, radiation damage, etc. Yesterday’s ordeal did answer some questions,
but this great team of doctors still does not have a clear picture of what we
are dealing with. We rule out more
testing which would be very invasive, and not worth the risks. Surgery to clean up some of my scar tissue is
a possibility. Doctor Gonzales explains
the process and risks. My only other
option is to keep things how they are.
After a long thorough talk the doctors leave the room. Rhonda and I discuss this new
information. I want to be free of these
drugs which make me feel horrible in so many ways. The withdrawal symptoms I just went through,
confirms to me the strength of the doses. I am leaning toward the surgery, but
want to sleep on it, and wait to see if Dr. Najm has any further thoughts on
the issue.
Friday, 12/11: I
awake from a sleep that is as good as one can get in a hospital, especially
when wired all up. Dr. Najm, whom by the
way has made us feel very comfortable and gained our trust in just a few days,
enters my room. I ask him “Have you
gained any extra insight since we spoke yesterday?” He answers, “Yes, I talked with my colleagues
again, and I thought a lot about your situation all night. We think that you are dealing with two
separate issues. First, we know you have
refractory epilepsy. Secondly are the
pains in your arm. Although this is
where your seizures start, the pain may not necessarily be seizure
activity. It could possibly be “phantom”
pain from the damage to your brain.”
Great, there is no clear-cut answer.
He continues, “We think that surgery is not worth the risk. Your best option is to continue to control
this with medication.” I ask “How about
lower doses of the meds.” To which he
replies, “Don’t get greedy. Just go out
and have fun!”
Time and time again, the doctors say more or less the same
thing, “just go have fun!” and we do our best to do just that. I’d be lying if I said that it doesn’t get
hard, a lot of the time. It can be a heavy
burden with nobody knowing how to treat my situation, how I am still here and
how much longer that will last. However
with all of this, Rhonda, the kids and I do manage to keep having fun whenever
possible. Being surrounded by family and
friends who offer way more support than one can ever imagine helps an awful lot
too. We thank all of you!
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| Some wonderful friends and family that visited me in Cleveland |
* The Epilepsy team at the Cleveland Clinic has regular peer reviews. A team of some of the best neurosurgeons, neurologists and epileptologists meet to discuss every patient’s data. They are an amazing team!
