Tag Archives: seizures

Changes In Latitudes, Changes In Attitudes

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Another fun Cusano family vacation to Nantucket is in the books!

Whether it was on the beach, out walking around town, paddle boarding (yes, I did it!) or at Cisco Brewery, I was happy and carefree.  It is great to just wake up with no pressures – no phone calls or emails to respond to, no meetings to attend.  I definitely need to reward myself and take advantage of the time that I am afforded to do this more often.

However, I’d be lying if I did not acknowledge the moments where my mind wandered and I caught myself thinking about the past and the adversity I have overcome to get here.  It wasn’t feelings of sadness or depression, but rather, joy and jubilance.  If you had told me back in 2008 I would be riding a paddle board in the ocean, traversing through massive yachts, I would have told you that you were nuts. For the past nine years, nothing has been perfect – be it law school, the bar exam, seizures, weakness or more surgeries.  Yet, this week was an exception.

All of this made me realize that everything in life is in flux and nothing is permanent.  I watched the waves rush in and then wash out.  Ferries dropped people off and then came back to pick people up to bring them home.  As I sat on the ferry home, I realized that nothing is constant – we cannot bottle up good times and moments to take them home, but we can certainly savor them.

I said it earlier, and I’m saying it again – nothing in life is permanent.  While this may sound negative, it is not because it is reality. Just like life on the island, everything comes and goes.  The good, the bad, you have to just keep paddling.

As I learned at an early age, life is short and should not be taken for granted, so live it up.

I Get Knocked Down, But I Get Up Again

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April 11, 2012 – it was my mom’s birthday!  But that date also holds another meaning for me.

I just finished eating dinner and was in the kitchen, when suddenly, out of nowhere, visual auras commenced.  I last experienced these in 2009 when I had my first seizure.  Here we go again.  Bring on the flashing lights and spinning room.  I panicked – I looked for someone, anyone, to catch my fall.  Within a matter of seconds, I was down on the floor – unconscious on the cold tile.  When I came to, I got myself over to the couch, put my head in my hands and said to myself “no, not again”.  I got on the phone with the closest people at the time – my parents, and they urged me to call Yale immediately.  The sound of concern in their voice resonates with me to this day.

Frightened and still disoriented, I called the hospital and left a message.   Within a matter of minutes, I heard my surgeon’s calming voice: “Chris – talk to me.  What happened?  How are you feeling? Is anyone there with you?  Did you take your medicine today?”  My responses were soft and slow, but at least I was able to answer.  At his direction, I took an additional Dilantin pill and assured him that I would be in contact as soon as someone arrived.

My brother, who fortunately lived nearby at the time, called and said he was on his way over to stay with me until my parents arrived.  While I pride myself on being an independent person, I have to admit that I was relieved to hear him say that he was minutes away.  As I was walking away from the door after unlocking it, out of nowhere once again, the auras returned, I twitched, spun around and was down.

I was woken up to the voices of my parents and brother, all of them nervously hovering over me.  My parents pressed me for answers to the questions, but knew that I was incapable of answering.  We all sat together for a few minutes on the couch and no one really said much.  I think we were all in shock and scared – or at least that is how I felt.  When the small talk reconvened, I told them that I talked with my surgeon and took another pill at his direction.  Rightfully so, they were concerned about the second seizure at the moment.  The three of us sat on the couch for a few more minutes, nobody saying anything and fearing the worst.  We rushed down to the emergency room at Yale-New Haven Hospital where more blood tests and an MRI were ordered and I was pumped up with medicines.  I was finally released around 3:00 in the morning.

Home to sleep for a few hours then back to Yale we went for an appointment with my surgeon.  Because I was alone for both seizures, there were not many answers to the questions as to why this happened twice in succession.   The results of my MRI were clear – there was nothing present on the scans that was cause for concern.  However, the results of blood levels provided further insight.

After my first seizure in 2009, I was prescribed Phenytoin (or more commonly known as Dilantin) and instructed to take 300/mg twice per day.  Phenytoin is used to control and prevent seizures and works by decreasing abnormal electrical activity in the brain.  The one caveat – the drug is dependent upon your body’s ability to absorb the drug in the bloodstream.

Thanks to breakthroughs in science, blood tests are used to determine whether the drug concentrations are in the therapeutic range.  For a patient my age and weight, the magical range is between 10-20mg.  When I arrived at the ER, my phenytoin level was down to six.  Yikes!  I was given a loading dose – 10 to 15mg by slow IV drip, at a rate not to exceed 50mg per minute.  After the IV had completed and the drug was in my system for some time, the blood test was re-administered.  Shockingly, the level had only gone up to an eight.

My surgeon referred me to a neurologist – someone who specializes in and is better equipped to handle seizure disorders.  During my visit with the neurologist, he explained that Dilantin’s requirement to stay concentrated in the bloodstream does not work for some people for reasons unknown.  Fortunately, there are other medications that can be taken that do not depend on blood concentration.  I take this moment to introduce levetiracetam, also known as Keppra.

I am prescribed to take the maximum daily dosage of 1,500/mg twice per day.  With Keppra, the drug instead works by communicating with nerve signals in the brain.  I just picked up my prescription at CVS and have the paperwork here which reads: “Leveiteracetam has been shown to decrease the number of seizures in adults and children.  It is not known how it works to prevent seizures.”  Awesome right?  But for whatever its worth, and knock on wood, I have been seizure free now since April 11, 2012.  I’m not sure if that was my mom’s birthday wish that year, but I like to think so.

Life continues to throw curveballs at me.  Though I never hit one of them as a kid, probably because I never had good eyesight (I like to think that it was due to the tumor growing, but that’s highly unlikely), I knock everyone out of the park now.  Watch out Ty Cobb, I’m coming for you.

Free Fallin’

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Frozen.  Locked.  Helpless.

These three words epitomize the feeling I felt one night in March 2009.  My mind froze and my body suddenly and without reason locked up.  The signal of communication between my brain and body were lost.

In talking about my first semester back in my last post, I told you “about halfway through, I was mentally done.”  This was the moment that I was referring to: my life’s latest curveball and the topic of this next entry.

To set the scene, I was reading my family law cases and the time was just about 6:50 according to my roommate.  A couple of minutes later, I noticed that the words on the page began to blur and when I tried to yell for help, I couldn’t.  I could not move my arms, let alone highlight the passage that I had just read.  Within seconds, I was standing next to my desk, spinning in circles uncontrollably and then all consciousness was lost.  My body was jerking and I was having uncontrollable spasms.  My heart was beating faster than I ever heard it and I was sweating bullets.  I felt my eyes rolling to the back of my head and the drool pooling at the corner of my mouth. Eventually, the twitches ceased and I slept.

When I woke up, I was on the ground with the upper half of my body in the closet.

“How did I get here?” I wondered.  Alone and afraid of the unknown, I rose from the floor and walked into bathroom where I threw ice-cold water on my face.  When I looked up into the mirror, I noticed a massive egg in the middle of my forehead.

I tried to recall the events that took place but was unable to remember anything after my manic spinning. I assumed that I was trying to find a place to sit down but lost my balance, fell and landed in the closet.  There were no words; no feelings that I could use to express what was going on in my mind.  It could only be summed up in one word: terrified.

I walked down the hall to my roommate’s bedroom and was greeted with an abrupt “what happened to you?!”

“I don’t’ know”, I replied.

I called home and my mother answered.  I heard her talking and asking questions, but I could not answer any of them.  “I do not know what happened” I continued to tell her.  She asked questions to gain information such as “what was I doing” or “when did this happen?” Again, I had no idea but my mom said to me: “You need to find out how long you passed out for.  It is 7:05.  What is the last time that you looked at the clock?”

Wait, holdup. It was only 7:05?  That means that I had only been out for a few minutes?  Why did it feel like I was in the deepest sleep for days?

I feared the worst.  I thought, “did the shunt stop working or worse yet, did the tumor grow back in a more aggressive manner?”

At the same time that I called my parents, my roommate was on the phone with Ashley to let her know that something was wrong.  Within minutes, Ashley arrived and began asking questions.  Unfortunately, I could not answer any of them. Still, I had no clue.

Now, to think having to be seen at the hospital was a hassle, Ashley brought me over to Rhode Island Hospital for an evaluation. I was without any of my records or past MRI’s and there was really no way for me to explain what happened other than “I was reading, felt weird and passed out.”  The doctors were completely unfamiliar with my medical history and the treatments that I had been through and they had to take my word on what I was telling them.  Fortunately, in my wallet, I carry my neurosurgeon and clinical coordinator’s cards for situations like these.  I remembered that I had them in there so I took out the card, handed it to him and directed him to call the number.  The cognitive exams and strength tests were normal and he assumed it was a seizure and pumped me up with anti-seizure medicines and fluids to hydrate me.  I was kept for further observation and finally released around 3:00 a.m.

The next day, I was back down at Yale for an appointment with my neurosurgeon.  Following the regimen of questions and my responses, he prodded a little further and sent me for a precautionary scan.  Finally, and to my great relief, the cause was confirmed – I had suffered a grand-mal seizure.

Unfortunately however, there was no telling what caused the seizure, but it is not uncommon for someone who has undergone such traumatic brain injuries as I had just been through to suffer a seizure.  But again, I could only wonder and ask myself “why me?”

With my prescription for Dilantin in hand, I was back on my way to school and headed back to classes.  But like any traumatic experience in life, I had conditioned myself to fear having another seizure.  Any evening that I sat my desk reading a case or outlining for class, I was reminded of my incident and felt the fear of “what if?” It’s completely irrational but I was uneasy thinking that something else would derail my quest and cause me to land back in the hospital.

After another email to my professors letting them know of the latest episode, they took it easy on me and I did not get called on the remainder of the semester.  But yet, exams were quickly approaching and I had to control my emotions and pull through.

However, if a seizure was all that I had to deal with, life isn’t so bad I told myself.  I told myself “It’s just another chapter to a great book.”

Or perhaps I’ll need to devote a couple of chapters to this topic….

I Am The Luckiest

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When I went out to Rhode Island to begin law school five years ago, I was alone and determined to begin my quest to achieve my dream and make new friends.  But little did I know that I would spend most of my off-time with my best friend and the girl I would wind up marrying.

Ashley, my amazingly supportive wife, wrote this next entry.   But for law school, there is no chance we ever would have met each other as we lived two-and-a-half hours apart.  But as destiny would have it, we lived on the same street during our 1L year and were in the same section for classes that year.   I can go on and on, but I’ll tell just this one story – maybe some foreshadowing of what was to come?!

As finals were approaching in May of 2008, my roommate, Ashley and I went to a bar for one last good time out and we  played darts.  Ashley and Joe both nailed the board and of course, my dart is way off to the right.  The two of them are cackling and I’m trying to figure out how to explain this.  Well…when I used to have too many “sodas”  at the bar, the double vision would return and thus the reason my dart almost took someone’s eye out.  So I explained it to the two of them and looked at me like I was crazy.

Real crazy, huh?!  But I digress…

I haven’t heard him shuffling around the house in a while.  He hasn’t had a seizure downstairs has he?  I picture him passed out on the floor, or worse yet, he could have hit his head on the way down.  I find an excuse to go downstairs to check on him.  Was that a facial twitch?  Did he just slur that sentence?  Why doesn’t he remember that I told him that story yesterday?  It can’t be growing back, can it?  Is it genetic?  Should and will we be able to monitor our kids for it?  Is that a red line on his chest, could his shunt be malfunctioning?  Does he have his shunt information in his wallet?  What if he has a seizure while he is driving, what’s my plan of action to take control of the car?  Should he be driving by himself?

I am a survivor’s wife, and these are the thoughts that flash through my head on a daily basis.

I have never told him about the extent of my concern (though I suppose now he knows – hey, hi!).  Granted, I am a worrier by nature, but I have to imagine that most spouses deal with similar fears and thoughts.  When the fears come rushing in like a bullet train, I force myself to slow down and think back…

Chris and I met during our first year of law school in the fall of 2007.  I doubt that the well-dressed, Yankee-loving Italian guy thought he would end up at the altar with an Irish-freckled, Boston tomboy donning a Red Sox hat…but life is funny like that.  The lines between friendship and something more had just started blurring when Chris was diagnosed with his brain tumor that summer.

Another law school friend and myself went to visit Chris right after his first surgery.  We knew he was unable to fully communicate with us, so we weren’t expecting much other than just being able to see for ourselves that he was okay.  Throughout the previous year, Chris and I had a running joke about how someday I was going to make him a Build-A-Bear.  He basically told me that he would rip it up and flush it down the toilet if I ever did.   I figured this was the perfect time to make good on my promise, and I made him his very own bear.  When we walked into the room, he couldn’t say much of anything, but I watched his eyes catch the Build-a-Bear box, and a wild look of anger crossed his face.  I was never so happy to see someone so mad – it meant he was still in there somewhere.

Even though his stuffed animal anger brought me hope, things got worse before they got better.  On our way back to the hospital the next day, my friend and I received an anguished phone call from Chris’ sister.  “Something’s wrong with Chris and he’s having emergency surgery, you probably shouldn’t come.”  We turned around and had the most worried, silent drive home to Rhode Island.  He survived what we later found out was a life-threatening infection.  I spoke with his sister after the surgery and I can still hear what she said to me: “My brother and I had to rush to the hospital to say goodbye because we really thought we were losing our brother”.   Now, every time I watch Chris together with his siblings, breaking each other’s balls and laughing, or when I see him holding his nephew, I think back to his sister’s haunting statement, and it always brings a tear (albeit a happy one) to my eye.

The months after brought a few more visits.  Verbal communication was almost impossible, and the frustration as he tried to say something he was thinking was palpable.  I would tell him stories and although he couldn’t respond, I could tell he understood by his facial expressions.  He called me on my birthday that year and tried to say “Happy Birthday”.  Such a simple phrase, and he struggled for minutes.  I sobbed after I hung up because I was equal parts heartbroken for him and just honored that he would try so hard for me.  I resolved to wait for him, because I knew he would be back…and a few months and a miracle later, back he was.

So when the worry monsters attack, I try to take a big step back and remind myself that I am lucky that I am even in a position to worry about him and the future.  I am lucky he can respond to me.  That he can actually go to work and tie his own shoes.  A good friend’s sister was just diagnosed with an inoperable brain tumor.  I couldn’t stop crying for her.  For everything her family is going through and for the fact that we are so god damned lucky.  I’m not a religious person, but I have to believe there’s a greater purpose for all this – for why Chris pulled through miraculously.   So when I step back and reflect, I realize that maybe my worries are really just blessings in disguise.

graduation

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