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!

Another Reminder Of Glioblastoma's Evil Power

Right after I got out of the hospital, almost everyone I know had stories of meeting or hearing about someone else with a glioblastoma.  The reality is there are many types of brain cancer, and when someone hears the word glioma, it is usually not the same thing.  However, I did hear about two people who actually had the same disease as myself. One was the young nephew of our mortgage loan officer.  He died in his mid-twenties, just months after finding the tumor.

The second person, who is a friend of my parents, was diagnosed earlier than me.  She too was one of the rare people who made it past the two year mark of diagnosis.  She was doing great until one day her husband came home to find her confused and unable to speak. A quick trip to the hospital was all it took to find out the tumor returned, reminding me that I can never let my guard down.  She is back in treatment and at this time we can only hope the best for her.

After hearing this I asked my neuro-oncologist how he handles having to tell a patient that their cancer has come back.  He said he has individual relationships with each patient and tries to figure out the best way to approach the situation.  He continued to say that he had to go through that several times on that particular day.  I know a lot of people have a hard time stepping away from work each day, but I can’t imagine how to shut that out.  More power to him!

Now onto my latest news.  As far as the cancer is concerned, I am doing surprisingly great with no reoccurrence.  The seizures on the other hand are still causing problems.  Because of my amount of seizure activity my epileptologist, Dr. Ania, feels that “I am like a volcano ready to explode at any moment”.  I, on the other hand am too stubborn to add more meds.  However, the longer that you have any type of seizure activity, the greater the chance of going into status epileptics, which could be very hard to get under control, and sometimes fatal.  We had a trip planned to the Sierra Mountains so I could fulfill a lifelong dream to see the ancient bristlecone pine trees.  Everyone was concerned about me going because of the high altitude, over 11,000 feet and the remoteness of where we would be.  I decide that it is worth the chance, I'm not going to let this disease completely control my life.  We rented a satellite phone to be as prepared as possible.  Dr.  Ania also prescribed a very powerful breakthrough med that Rhonda could administer in case of emergency.  Even with the phone it would take an hour or two for the paramedics to reach us.

The trip went well and now that I am back home we have to figure out what to do about getting control of my ongoing seizure issues.  I was supposed to add a new drug before the trip, but after picking it up from the pharmacy I decided against it.  So my next move is to do a 24 hour lab test to see exactly what kind of activity is going on.  I will be stuck in a room all day wired up like “your humble narrator” Alex, from A Clockwork Orange (sans the eye clamps).

I am hoping for miracle test results that show I won’t need more medications.  However, I think I am kidding myself and the hunt for the right pharmaceutical cocktail will start all over again.

Meanwhile, Rhonda continues to look for more answers or options.  She again called several doctors at top university and research centers.

Their theory is, if I am able to walk, talk and basically function, I am doing great and should count my good fortunes.  I am 100% aware of this fact, but it doesn’t make things easier.

Closing In On Two Years

This all began April 2013 when the ER doctor came in and turned my life upside down with this statement … “The CT scan shows a lesion on your brain.”

Fast forward to today.  I honestly thought that I would be dead by now.  However, I am still here and if I make it one more month, I will be one of the less than 25% of Glioblastoma patients to survive this long.  Ten years ago the two-year survival rate was under 12%.  Apparently the research is paying off.   I am very fortunate to be on this side of the statistics.

Brain waves during seizure activity

However, this is where things get tricky.  Because surviving this long is a rare and relatively new thing, there is minimal research on addressing the various complications of the “long term” survivors.  In my case the biggest problem is refractory epilepsy (seizures that do not respond well to drugs).  The epileptologist whom I am working with is one of the best in Florida.  However, he is not very familiar with seizures as they relate to glioblastomas.  So Rhonda contacted specialists at Duke University and Mayo Clinic.  In both cases they agreed that there is not much else that can be done.  With the lack of research in this area, trial and error is our best course of action.

So my treatment consists of trying various combinations of pharmaceuticals  (this is typical for anyone with refractory epilepsy, we are just more in the dark in my case).  Going from one med to another can take months for the gradual introduction of one before weaning off another.  There are so many combinations and variables that it could take a year or more to find a blend that works.  Once found, the cocktail may only keep the seizures away temporarily, before they come back as my body grows accustomed to the drugs, and we have to start over again.

I feel better than I have in a long time on my current blend of drugs.  However, the seizure activity has not been controlled.  Furthermore, feeling better is a relative thing.  Last summer I felt great, more so than I had since this all began.  Last fall is when the seizures returned causing my health to go up and down like riding a roller coaster.  One day I physically feel pretty good, the next day I can hardly walk across the room without stumbling and bouncing off the furniture.  Mentally is a whole different aspect.  On good days things are foggy.  I constantly lose focus and catch myself blankly staring away.  Once I snap back I am not sure where I was or how long I was “gone”. 

Every day things that I used to take for granted have now become major tasks.  Remember as a little kid how frustrating it was to tie your shoes?  I often find myself in that situation.  Buttoning a shirt is a real task.  Untangling a knot.  Turning an inside out shirt right side in feels as challenging as a Rubik’s Cube.

My friend Tim once said… ”Several years ago I broke my foot and I remembered thinking how hard it was to make a sandwich with a cast on my leg”.  At the time I thought it was very funny.  Now I think of his comment several times a day as everything I do takes twice as long to accomplish. 

  

One of my magazine articles

For the past 18 years I have been writing "how to" articles for Amazing Figure Modeler magazine. I have also done a lot of commission jobs in this field.  A couple of years ago I started fading out this kind of work in order to focus more time and energy on my fine art.  Thankfully I was mentally prepared to stop working on the 3D pieces, since the coordination problems in my left hand create too much of a challenge to make this sort of thing feasible.  Last week I was reminded of this when I customized a  Disney vinylmation for our fundraiser (more about this event in my next post).

A recent self portrait

Luckily my left arm hindrances have not stopped me from working on my fine art.  I have had to make some adjustments to the way I work.  Like so many things in my life, it has slowed down what was already a time consuming tedious technique,  but I haven’t had to compromise my style.