Tag Archives: brain surgery

If I Had A $1,000,000

Let me just get this out there – having a brain tumor is life-changing. No, I don’t mean in terms of how I look at life now.  Rather, I am talking about the unintended consequences that we don’t think about when we are faced with this type of situation unless we are in it.

From what I’ve been told, recovery after brain surgery can vary from: having a quick and seamless recovery, to being in the fight of your life like I faced or you may never recover and remain in a diminished capacity.  And if that’s not enough to think about, the cost and toll of living as a brain tumor survivor can wear you down pretty easily.  Let’s talk about cost…

As kids, we are told that if we do well in school and pursue our dreams, we’ll make lots of money and live a happy life.  But what our teachers did not tell us as innocent students in elementary school is that sometimes, life throws us twists that come out of left field and blind side us – and leave us scrambling for solutions on how to solve them.  Growing up, I at least assumed that nothing could stop me if I did well in school and graduated college, let alone graduating law school.  After all, we work to make money to pay for all of life’s wants and needs.  Until you are admitted to the hospital, that is, and your money can no longer be spent on your wants.

When I returned home from a wonderful vacation in Nantucket two weeks ago, my wallet was thin.  Yet, it was well spent.  However, within the first few hours that I was home, the mailman delivered another bill for my MRI this past March that I currently pay on a payment plan and CVS called because my Keppra is ready to be picked up.  This leads me to my rant – the absurd costs of health care and health insurance.

For an MRI, my insurance company bills the hospital $4,900.  Yes, you read that correctly – approximately $5,000. I for one am extremely grateful that MRI machines exist.  But for the forty-five minutes, sometimes an hour, that I am in there, I find it hard to believe that that machine actually requires $4,900 to run, notwithstanding the plethora of MRI machines on site.  And I understand that the machine produces images but they are all viewable on a computer.

The next item on the bill: the cost billed by the technicians to read that MRI – $450.00.

Then there’s an associated cost for my doctor’s visit.  A measly $245.00.  For me, and I’d imagine others in my position, the doctor’s visit is the most important part of the entire process.  I get to hear progress from my own doctor’s mouth and view the images so that I can see the news for myself.

As for surgery, well I hope you’re sitting down because I don’t want to be the cause of any unintended fainting spells.  You’ll recall that I had gamma knife surgery last December.  The total amount billed from that one-day procedure alone was $92,000.  That’s for one day.  For my extended stay in July 2008 when I had the tumor removed and the surgery for the subdural hematoma, the hospital billed the insurance company $297,000.00.

Okay, so once the tumor was removed and my head was mended back together, I needed to rehab and did so at Gaylord Hospital.  For each day that I was there, our insurance was billed $2,600.00.  This was for my therapists, pens and paper, flash cards, alphabet charts, balancing beams and workout equipment.

The scary bottom line is this: If I didn’t have health insurance at the time, I would not be here because the procedure would not have been performed.  I am grateful for health insurance, however it continues to remain a problem for so many Americans today.

Fortunately, I am offered health insurance through my employer but for someone like me, even the insurance plan is costly.  For my co-pay to kick in this past year, I had to put up the first $4,000 of medical expenses.   When I called to make my payment on my account last week, I was informed that my “other” balance was going to be sent to collections soon if I did not pay the entire sum or apply to pay the balance on a payment plan.  After all said and done, this “other” balance was my procedure in 2012.  At the time my procedure was performed, I had not yet hit my deductible, so my portion of coverage was in excess of $2,000.  Add that to my 2013 balance and my total responsibility is $2,530.67.  Well, I guess my payment plan was just extended.

Some people go to work to provide for a family, pay their mortgage and have nice things.  What you cannot plan for is your health – you can only hope that you stay healthy each year.  If you don’t, not only will your personal world spin around, but your financial health will too.  Who is not going to try their best to afford to pay for their life?  And while I know hospitals are running businesses too, quite frankly, the extent of the costs seem somewhat criminal.

Changes In Latitudes

At the time that my shunt was inserted, the doctors cautioned me that I should prepare myself for the day that it would need to be replaced.  Little did I know that that day would come just four years later.  While nothing in life is certain, nor should anything be taken for granted, the actual expectation was that the shunt would only need to be replaced every 10 years or so.

I’ll admit, I do not profess to understand all of the complexities and technicalities of the brain, though I wish I did.  Ever since my diagnosis, I have become fascinated with the brain, how it works and controls every part of the body.  I soak in everything I can possibly learn about it.  My doctors informed me of the signs and warnings that I should be on the lookout for that would signal a need to replace my shunt: redness or swelling along the path of the shunt, headaches, confusion, memory problems or any other symptom I experienced prior to having the shunt inserted would indicate there could be an infection or malfunction.

Knowing everything I had learned about my shunt made the results from my six-month follow up MRI in September of 2012 surprising.  I was feeling great and functioning normally – none of the signs my doctors warned me about were ever present.  Low and behold though, diagnostic imaging showed a buildup of cerebro-spinal fluid in the ventricles and a malfunction with the shunt.  But why wasn’t I manifesting the symptoms I had previously, such as trouble with my speech, confusion and aphasia?  Had I been so entangled with the bar exam that I lost sight of how I was feeling and lost my ability to assess myself?  Despite my optimism that all was well, my surgeon decided that it was already time for a shunt revision.

Emotionally, this was a major blow to my recovery process.  I had come such a long way in the span of 4 years and now I had to face the prospect of starting all over.  I feared that the shunt might not be as effective as the first one or that complications which I did not experience the first time around might arise.  I had finally found my groove and was comfortable with my new robotic mind – and now this.  Why couldn’t something, just anything, go right for me for a change?  But hey, nothing good comes out of complaining.  Glad I can find a sense of humor in these things now530e9c97ed7a3e96831b5a77bd3ca664.

On October 1, 2012, I headed back to Yale.  As I was wheeled into the OR and instructed to lie down on the cold metal slab for the surgery, I was again faced with the question of “what if?”  But in my head, I knew everything would be okay and I’d be as good as new in no time.  Before Ashley and my parents had the chance to enjoy the spread of food that the hospital serves them while I’m having my head drilled open, the surgery was done and I was back in my room sleeping off the anesthesia.  Sorry to them all that they were unable to finish their chocolate chip muffins…

This hospital stay was different from my previous stay, however.  Rather than being a complete invalid, I was conscious and alert of my surroundings and life around me.  Then again though, how could I not be?  I was woken up every hour by the nurse and resident neurosurgeon to take my temperature, make sure that I was sleeping, asking me questions such as “do you know what day it is” or “can you tell me where you are?”  My favorite one of that night though was “Chris, have you been walking around?”  I thought to myself, “seriously, at 4:30 in the morning?”  My response: “no doctor, I’m just trying to sleep.”  I had returned to my quick and sarcastic self in no time.

I wrote a text message to my parents at 4:30 that morning to share with them the latest updates.  I felt like my life had become a daytime soap opera.  img_ynhh_tab1Rather than General Hospital, I’d call it “Yale-New Haven – Against All Odds”.

How did my life come to this, I wondered.  But it did and I have learned to accept it because after all, life is full of adversity and I had learned to readjust the sails to go with the direction of the wind.

Brainstorm – Part Two

Will I wake up normal?  Is there a chance that this surgery could lead to unintended consequences?  What if they can’t get the shunt in place and find that there is no plausible way for me to have the device inserted – does that mean this is my life forever?  Wait, what about my song?

Within a matter of minutes of being taken into the OR, Dr. Piepmeier greeted me on the cold slab of metal and said the team of doctors was ready to get started and that he’d see me in a little while.

Now, before I go any further, I have a request.  Think of a moment in your life where your hopes for something completely outweighed the realistic expectations of it happening.  Once you have that moment, you can continue reading.  See if yours measures up to mine…

Great, here we go again. 10…9…8… Sweet dreams…and knocked out I was yet again.

Once I was out of surgery, I was wheeled down the hall back to the ICU to sleep off the anesthesia.  Now, you have to understand that nobody in my family ever conveyed the odds and percentages of the surgery to me so I did not know what to expect coming out of this.  Regardless of the odds, I knew it could certainly help me. In the midst of being woken up by the doctors and nurses, I recall feeling “different” somehow; I was able to recognize that the thoughts in my head were clearer and I was better able to understand the conversations that were taking place around me.  However, it was still too early in the recovery process for me to test myself but I had a fleeting thought that perhaps my progress would now move along much quicker.  But then again, I was still in such a fog that I was not able to fully appreciate what had actually taken place and knew I was being delusional.  I was in and out from the anesthesia so I took the time to sleep, heal and recover.  Still though – there was this nagging feeling that maybe I was back to my old self.

When I had finally fully woken up and come to my senses, I again felt like I was in a dream.  Things around me suddenly made sense and I was able to put 2 and 2 together to understand that I was now a bionic man with a valve system in his brain to help me function in society.

Come to find out, my dream was no dream – it was reality.  I felt just as I had prior to the time when all of this began.  I was alert.  I was watching TV and playing on my phone.  Yes, you read that right – I was using my phone to read the mass of emails and text messages that had piled up from family and friends the past two months.  And then the moment that I had been waiting for had come – my family had arrived.

I heard my parents’ voices as they were talking with the doctors and nurses outside of my room before coming in to see me…I eagerly awaited their arrival.  My dad entered the room first (here comes my moment):

I greeted him with an enthusiastic “good morning, Dad!”  Then my mom came in and I said “good morning, Mom! How are ya?!”

The looks on their faces were priceless…faces that I’ll never forget.  I found that the moment was beyond satisfying.  What an absolute whirlwind.  Not less than 12 hours ago, I couldn’t say my own name, let alone say “hi” to my parents.  They continued to engage me in conversation and I was actually doing it!  Though my response time was slow, I understood all the questions being asked and was able to respond.  The sound of my own voice had never sounded so good.  I had shown my family and myself what I knew in my head – I was still in there and simply needed some manipulation to break free.

And when the entourage of doctors rolled in, they bombarded me with the usual questions.  This time I was able to tell them my level of pain in a comprehensible tone, replied that “yes, I do have a headache” and “three” in response to “how many fingers am I holding up?”  Once they left, in came Dr. Piepmeier and Betsey.  He looked at me in awe, but nonetheless asked me how I was feeling.  I replied “great!” I remember him just looking at me, almost as if he thought he was dreaming but nope – this was no dream.  When my sister and brother came to see me, I greeted them all as well.  Overnight, I had gone from a shell of my old self to almost as good as new.

Walking around the hospital hallways with my mother that day, we walked past a diagram of the brain and I stopped there with her to show her what had been done to me during the surgery.  As I was explaining where the valve was inserted and where it was draining to, a voice behind chimed in and said “very impressive Chris.”  It was Dr. Piepmeier.  That moment is also one I’ll never forget.

Two days later, my paperwork was being prepared and I was released – free to go home.  When I got home, one of the first things I wanted to do was sit down at my piano and play.  I was hesitant at first, but it was something that I had to do.

I sat there, placed my fingers on the keyboard and I started to play.  Without even thinking about it, that beautiful sound was coming out.  Like it was yesterday, I began playing my composition and it was if I never stopped playing.  I played the first few bars of the song and into it I went – remarkably, I had played everything I had written previously, but this time it sounded really good.  Over the next few days, my determination to finish my song was completed and all I needed was a title.  And then it hit me.  With all that had just taken place in my brain and the further brainstorming I was doing to find a title, I titled the piece, very simply “Brainstorm”.

Foreigner’s “Double Vision”…Barbara Streisand’s “Send in the Clowns”…Ice Cube’s “A Man’s Best Friend”…Manfred Mann’s “Blinded by the Light”…Louis Armstrong’s (or my preferred version sung by Stacey Kent and the song my mom and I danced to at my wedding) “What A Wonderful World”….Ben Folds’ “I Am The Luckiest”…Patrick Watson’s ”The Great Escape”…Billy Joel’s “Keeping the Faith” and “Movin’ Out (Anthony’s Song)”…Michael Jackson’s “ABC”…John Michael Montgomery’s “Sold” (Hey Pretty Lady Won’t You Give Me A Sign)…”Take Me Out To The Ballgame”…”Somewhere Over The Rainbow”…Pearl Jam’s “Come Back”…Jack Johnson’s “Sitting, Wishing, Waiting”…Josh Groban’s “You Raise Me Up”…Avicii’s “Hey Brother”

“Brainstorm”

All of my posts’ titles have been these songs or lyrics borrowed from them.  They express the chapters of my life and relay the emotions of my story.  For me, music is everything – it is one of my passions.  And miraculously, I had it back.

Without more, here it is.  Brainstorm © 2011

chris cd cover v3_1

 

Brainstorm – Part One

By now, I hope you have noticed one common theme in all of my entries – if you haven’t yet, you’ll have to wait until part two of this post for the revelation…

At the age of 8, I began playing the piano and taking lessons. I grew up with the piano that my mother took piano lessons on and which I learned to play. Those of you who know me, you can attest to the fact that when I put my mind to something, I am determined to do it and do it well; it was the same way with my piano lessons.

After returning home from Rhode Island in May of 2008, I began writing an original composition. When I played the song, my parents asked me what it was and I replied that it was a song I was writing but that needed an ending. My family proposed some names and ideas, but none of them were what I was looking for – I needed to brainstorm.

As Stephen touched upon in his toast at my wedding, one day in late August, the doorbell rang and it was our good family friend, Caryl. Sadly I say that I do not recall much else about Caryl’s visit other than me playing the piano for her. But looking back at it, I am beyond grateful she asked. Up to that point, I had not played too much as I grew far too frustrated with myself and my inability to play. But she did not care – she knew I had it in me and just believed in me. With Caryl and Stephen watching and waiting for me to do something, I sat down at the piano and took a deep breath and began to play. I managed to play as much of the song as I had written. I’m sure it was chock full of wrong notes and whatnot, but I had done it. A major accomplishment? No. But an accomplishment for me? Absolutely.

The date was sometime in late August 2008 and things were still going downhill for me. I was making absolutely no progress in my recovery. My ventricles were still clogged from debris where the tumor sat and the hydrocephalus was acting as a crux in my quest to recover.  After all, that’s what hydrocephalus is – a condition in which cerebrospinal fluid (CSF) builds up in the ventricles. Thus, the time had come to decide whether we would pursue the implantation of a shunt.

If you’re wondering what a VP shunt is, fret no more. The easiest way that I can describe it is as a device that allows excess CSF built-up inside the skull to drain into the abdomen.  One incision is made in the back of the skull to insert the reservoir and valve deep within the brain and then one incision is made in the abdomen to place the drain where the CSF would release. Tubing was implanted under my skin to connect the valve to the drain. So, to connect the dots…when the pressure of CSF builds inside the brain, the valve opens, the excess fluid flows down the drain through my head, into my neck and eventually drains down into my abdomen. Brain juice!UntitledDecision Time

Up to this point, my biggest decisions were what I would eat and which couch I would lay on for the day.  When it came time to ultimately decide whether to pursue the shunt operation, I made my voice heard. I was yearning to break free. I knew this was my only hope and the best option.  However, my parents had some remaining questions….

On the Saturday before Labor Day, I had a call with Dr. Piepmeier.  Karen and I were debating back and forth the pros and cons of the potential shunt surgery, which had been whispered about since the initial surgery.  The concern was that when Chris was initially admitted to Yale almost 8 weeks ago, he was already suffering from hydrocephalus.  This was the most puzzling part of the situation to the medical staff…how was he even functioning?  After 6 weeks of rehabilitation, almost no progress was made and the latest MRI showed that the ventricles were blocked and swollen, and the hydrocephalus was still present.  Dr. Piepmeier and I then discussed the options, which were: (1) stay on course to see if the healing process would correct the situation or (2) to have the shunt inserted.

We then talked about odds and percentages.  After insertion of the shunt, approximately 80% of the patients will see improvement in their cognitive function within 6 months to up to 2 years…15-20% regain total cognitive function within 6 months…and a very small percentage, 1-2%, has an immediate cure overnight.

We also discussed the potential risks.  We were advised that there was potential for the development of a blood clot in the brain, swelling in the brain, infections and seizures. In addition, we were also told that there is a risk that the shunt could malfunction at some point and also that the shunt system would need to be replaced once, twice or even three times throughout Chris’ life.  But just what if, in a miracle circumstance, Chris was the 1-2% case and the procedure worked without any unintended consequences and aided his recovery process?

I then asked him what I still believe was the right question: “if Chris was his son, would he do the surgery?”  His answer was an immediate yes.  My vote was now to do the surgery.

With all that I had been through up to this point, I felt that I had nothing to lose. I considered this to be the easiest decision I had been asked to make up to this point. I understood all of the risks and was realistic that even if the procedure went without any issues, it would still be a long road ahead. I knew that it was likely that no results would be seen for quite some time, but I knew my body better than anyone. The flash cards, ABC chart, workbooks full of addition and subtraction problems, the paper we all used in 2nd grade to practice writing in between the lines, etc. were simply not working. But more importantly, I was getting tired of being trapped inside my own body.

It’s Go Time!

On September 8, 2008, I underwent surgery for the implantation of the VP shunt. The surgery was scheduled to take place early in the day which meant prep for the surgery began very early and which also meant I had to begin fasting the night before. As luck would have it, the procedure continually got bumped as other cases had taken priority over mine…I was getting restless…anxious…and extremely hungry. Finally, around 4:30 in the afternoon, I was wheeled into the OR…

 

Blinded By The Light

Freezing and bright.  That is what I remember the operating room being like right before being put out for my surgery to remove my tumor.  Sort of reminiscent of an alien abduction – or what I imagine it would be like.  I’m not sure which I would prefer – the abduction or the surgery, but I do remember trying not to look around too much in fear that I would see the tools and instrumentation that would be used to rip into my skull and remove the tumor.  I was greeted by smiling faces from the doctors and neurosurgeons, giving me reassurances that all was going to be okay.  Within minutes of being there, the anesthesiologist was ready to get started and I was instructed to begin counting backwards…

“10, 9, 8” is all I can remember.  I was confident going into the operation, but I would be lying if I said I was not scared that I would not wake up, so when I opened my eyes and saw my family by the bed, it was exhilarating. Everyone can relate to that moment where they wake up from a deep sleep and you have someone talking to you, but waking up from anesthesia after nine hours of brain surgery was overwhelming.  Despite my joy that I actually woke up, it did not take me long to understand what a hurdle this was going to be.

Within a matter of a month, I had gone from taking law school final exams to trying to string together a coherent sentence in response to the hospital’s favorite question: “are you in any pain?” I felt like responding, “No, no pain at all.  I just had my head cracked open and rummaged in.  I have tubes and a catheter protruding from my head, but no, no pain.”  Normally, I would whip out this sarcastic response in a heartbeat, but even attempting to actually verbalize this response was impossible.  I remained confident and did my best to mutter something, anything.   My naming (ability to identify people and objects) was intact and my strength was average.  However, my speech was minimal and it was clear that I was suffering from hydrocephalus, also known as “water on the brain”, a condition in which the cerebrospinal fluid builds up within the ventricles.

It’s crazy – to me, everything that I said to my family and the doctors at that time made perfect sense to me, but I was later told that what I was saying was not making any sense whatsoever.  I can relate a lot to someone who suffers from locked-in-syndrome.  But I’ll save that for another day.

On the morning of July 6, 2008, four days after the tumor was removed, my father came to the hospital early in the morning to check in on me, just as he had done the previous three days.  One day earlier, the drain that was put in to drain the CSF fluid and the catheter were removed and I was progressing better than expected. The doctors were so pleased with my progress and everything was on schedule for me to go home within a day or two.  And to top things off, my uncle came to visit and brought breakfast – yes, Italian pastries.  I watched as my father and uncle devoured them.  I could only watch.

As I sat in bed reading words that I recognized in the sports section of the newspaper, things suddenly began to deteriorate.  I started having trouble conversing and began having severe headaches, nausea and vomiting, and my heart was racing as if it was going to beat out of my chest.  The room was spinning and I was sweating bullets.  I suddenly could not move the right side of my body.  Thoughts were racing through my mind at such an alarming pace that I cannot even begin to spell them out, but I knew something was drastically wrong.  I heard my father shouting for the nurses and the sound of the brain activity machine was beeping manically.  Within a span of a few minutes, I had lost all of my motors skills and was manifesting the symptoms of a stroke.

At this point, my mom had arrived at the hospital along with my sister and brother.  I saw everyone crying and yelling as I lay in the bed with my body seizing and unable to communicate or express myself in any meaningful way to let them know I would be okay.  I had only wished I had a way to tell them not to worry, even if I did not believe that myself.

As I was wheeled out of my hospital room, my brother and sister said their goodbyes to me because they were afraid they would never see me again.  Both my mom and dad were running down the hall next to my bed as I was wheeled into the OR.  Just as we parted ways, my mom gave me a kiss and told me she loved me and my father took my hand, squeezed it and asked me to squeeze his hand if I understood.  Pathetically, I squeezed his hand and it was at that moment that we all knew I was going to make it out of this procedure and live to tell this story.

Send In The Clowns

Any one who has gone through an emergency procedure knows the whirlwind it becomes.  Upon hearing the information I had long suspected I would hear, I was immediately rushed to Yale-New Haven Hospital where Dr. Joseph Piepmeier, head of Neuro-oncology, and his staff would be waiting.   Once I arrived, life was moving at an alarmingly fast pace.  There were questionnaires to fill out, identification bracelets to put on and doctors coming in and out of the examination room.

As Yale-New Haven is a teaching hospital, there were many graduate students that came into the room at the direction of the neurosurgeons and each asked the same questions over and over and over.  My favorite one of all was “What kind of pain are you in?  Any headaches?”  Seriously?!?  I first hoped that maybe this was all a bad dream and I was merely guest starring in an episode of Grey’s Anatomy.  Once that hopeful thought fled, I felt like replying, “no, I’m here because I like the hospital food.”  Once that barrage was over, in comes Dr. Piepmeier.  He was followed into the room by his chief resident, fellow neurosurgeons and the clinical care coordinator.  There was something about Dr. Piepmeier that calmed me – he had this glow to him, almost as if the moment I saw him I’d knew he would be able to help me.

I was then briefed on the situation – I had a tumor sitting in the ventricular system that displaced the septum pellucidum.  The procedure was described to me and I was told where the incision would be made.  Now, I’m a fairly bright kid.  I graduated UConn cum laude and had one year of law school under my belt so, I had heard my fair share of crazy latin terms.  But “ventricular system”, “cortical incision” and septum pellucidum?  He looked at me and said “any questions so far?”  I shook my head no, but if I were really on top of my game, I probably should have said “yes, do you have a medical dictionary?”  Between all the doctors in and out, the questions and medical jargon, I felt like I was at the circus – not quite Barnum & Bailey’s though – more like a creepy, frightening Cirque de Soleil.

I was then informed that emergency surgery was scheduled the next morning and it was my doctor’s hope that the entire tumor could be removed.  I signed the consent…as if I had any other option…and with that, a few questions were asked and the doctor was on his way and told me he’d see me in the morning.

Stunned and scared, I did not know what to do or what to say.  Shortly after, a nun from the hospital Chapel came into my room and asked whether she could pray with my family and I.  This is the moment that “it” all became very real to me and I knew that I needed God in this time of trouble.  I cannot even describe the thoughts that were going through my head at the time because I honestly do not even remember.  I was in such shock that this was happening to me.  The only question I remember asking the nun and my parents was “why me?” and nobody had the answer.