Saturday, December 19, 2015

How I Survived My Epilepsy Tests at the Cleveland Clinic


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.

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!

Some wonderful friends and family that visited me in Cleveland 
Click here to read about this event from my beautiful wife and caregiver's perspective.

* 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!

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