Starting with a story

I am excited to be writing this and I figured I'd start by telling you how thrilled I am to report that I have now been completely seizure free for two years. What a way to start a new year…2014 is going to be great!

As I approached the two year anniversary of my Brain Surgery on December 14th, I reflected on how my health has changed and the value that the decision to have surgery has had on the rest of my life. I also started thinking about how Epilepsy, seizures and other life choices have impacted my life. Life experiences make us who we are and I am sharing just part of my story in this blog, and how the story translates into who I am as a father, husband, friend, leader, educator and human service professional. 

Why did I have Brain Surgery? I had Epilepsy since I was a child and the surgery was done to eliminate my seizure activity. That’s the simple answer. But, there is more to the story…

The seizures that I had were challenging in many ways, in addition, the medicine that I needed to take created additional quality of life issues. As a child with epilepsy I thought “why me?”. As I matured I realized that it was something that I could learn to function with, especially as I stopped having daytime seizures at the age of twenty. The challenges that came with seizures were significant but I’ll save some of that for another post. 

After the birth of our second child Evan in 2009, it was determined that he has Chronic Kidney Disease and would possibly need a kidney transplant at some point. Evan’s nephrologist described his condition as something misfiring when the kidneys developed and felt it could even be connected to my Epilepsy. This was certainly an eye opening conversation and helped me realize that maybe I needed to learn more. I needed to take my health more seriously so I could better take care of my son.  On a side note Evan is doing great.

As I started to look a little closer at my overall health, I went through a series of changes with doctors. While doing this, I also looked closely at how I dealt with stress. Evan’s health condition helped me realize that while I appeared to handle stressful situations well, the seizure activity increased dramatically when under stress. However, I figured there wasn’t too much I could do to decrease this stress. Stress and the seizures overall were not healthy for me. In 2010, I began to see a new Epileptologist at UMDNJ. My new Doctor did not find it acceptable that I was continuing to have numerous seizures each night. I tried to convince him that I could live with this and it wasn’t really an issue. He responded by asking if I thought living through a heart attack was an option. I was surprised that my heart was even discussed, especially since my brother Tim had died in 2002 of Sudden Cardiac Arrest. I told him that I had done all the preventive testing to make sure my heart was okay. The doctor explained the damage that these seizures could have on the rest of my body included my heart. While stress may be something that caused an increase in seizures, the stress that the seizures were having on my body could have long term effects on my health. This was important information that I had not properly understood before. My next question was; would having seizures in anyway impact my ability to be a kidney donor for my son Evan? His answer was very definitive, if I was having seizures being a donor would be very unlikely. It was at this point that I realized that having seizures and dealing with the medication was not just about Paul, it was about my family and all those that I was important to. I was somewhat embarrassed that I hadn’t realized this sooner.

I began to take the idea of working to eliminate the seizures much more seriously. Throughout my life I had changed medications and dosages frequently. The doctor didn’t believe that changing the meds was a real solution. His solution was further testing to help determine if Brain Surgery was an option. The topic of surgery or even a Vagus Nerve Stimulator (an implant device that could potentially stop a seizure from occurring) had come up in the past but I had always dismissed it as not really being an option. The doctor told me that MRI technology had improved, therefore, he thought we would be able to get a better picture of where the seizures were coming from and if surgery was an option. Following the MRI, I made an appointment to see him and expected to hear that surgery wasn’t an option. Upon entering the room, it was clear that the doctor was excited, anxious and almost nervous to share with me the results of the MRI. He and I reviewed the MRI together and for the very first time at the age of 38, I could see the dysplasia as he referred to it, in the right temporal lobe and it appeared it to him that it could be removed with minimal risk or side effect.

This was big news! Being seizure free went from something I thought would never happen, to a possibility. Now I had to determine if it could be a reality. This was amazing news. As I drove away from the hospital that day, I remember thinking that this could be the biggest decision I ever make. I was anxious, excited and very nervous all at the same time. I was determined to do whatever I could to make sure I could be there for family. I was scared but very excited that this was possible and I was ready to make this happen.

Dr. Marks at UMDNJ deserves so much credit for helping us get to this decision, but he didn’t have the surgical team necessary to take the next steps. After doing some research, we determined that St. Barnabas, Livingston, NJ had a team of doctors that I should see. I started seeing Dr. Eric Geller and his team. After a few more tests that reconfirmed that I was a good candidate for surgery, we had the pleasure of meeting with Dr. Werner Doyle, the surgeon who would change my life forever. Dr. Werner Doyle is a brain surgeon based out of NYU that has a partnership with St. Barnabas. I read an article about him and his kindness and I remember thinking that it sounded like he was too good to be true. It was all true. Choosing St. Barnabas and Dr. Geller and Dr. Doyle was the greatest decision. Putting my health in the hands of these professionals was so important to me and my family.

Dr. Doyle met with my wife Ann, my mother and I in order to thoroughly go over the process and the different phases of surgery. He met with us for almost three hours and explained the details of epilepsy, the brain and the surgical procedure to us in a way that was better than I could ever imagine. The kindness that he showed in this three hours could have been as important as the skill that he utilized when completing surgery! His ability to explain the risk, vs. reward and the surgical procedure made it all seem very simple. I left that day feeling in awe that I could be so fortunate to have a Doctor who was not just the best at what he does but he was also an amazing person!

Over the next several months I went through a series of additional tests. The most interesting part of the preparation was the psychological testing that determined what kind of effect that the seizures had on my different cognitive functions. The result of these tests certainly showed that my reactions to things and how quickly I gathered information was in fact slowed down by the years of seizures. The best thing about this was that it helped me realize that my quality of life was hurt by years of seizures and if the surgery was successful this would improve…hopefully. The compensations that I made and the challenges that I faced were even greater than I had realized.

I was scheduled for the first phase of the two part surgery on December 7th, 2011 with the actual surgery taking place on December 14th. The weeks and days leading up to admission into the hospital were filled with mixed emotions. I was excited to be doing this. I was also scared that I wouldn’t be the same person when I came out or that the seizures would be worse or that there would be damage to something else. I remember a few days before surgery I was participating in the Boys & Girls Club, Wall of Champions Holiday Gala. Many in the room knew that I would be taking a short medical leave. The support I received from family, friends and colleagues was tremendous. I was excited and the overwhelming confidence that I had in Dr. Doyle helped me to get through these various emotions. The risk of doing this was nothing in comparison to what the reward could be. The worst case scenario was that my seizures wouldn’t go away, but they likely wouldn’t get worse. It was also possible that my hearing could be slightly affected. I was very fortunate with the location of the dysplasia because although this possibility existed, it was not likely that there would be negative side effects. The possible rewards from the surgery were that I would sleep better, hopefully have more energy, be seizure free, eventually not have to take medication and I would be healthy enough to help Evan one day should he need it. 

As I arrived for phase one of surgery, the first step was to remove a portion of my skull that covers my right temporal lobe. I remember lying in bed in line waiting for Dr. Doyle to arrive. He did a great job of calming the nerves of my wife, parents and myself before and after this part of the surgery. A U-shaped portion of my skull was removed and preserved to be put back after phase two. When I think back, pain is not what I recall from afterwards as much as feeling foggy. I am told that during periods after the first phase, I was actually very alert to what was happening around me. Following this phase, over a hundred leads were placed on my brain to measure activity and pin point further the location of the dysplasia that would be removed. I was then taken off the medication so that I would have a seizure and they could again confirm the location the dysplasia was located in. Next, they did further testing to measure and test the brain function in and around where they would be removing the dysplasia. Ultimately, it was confirmed that there was minimal risk and likely no side effects of removing the dysplastic brain matter. On December 14, 2011 the surgery was performed to remove the portion of the brain that was causing the seizures. The pain following phase two was significant. After the surgery was completed and they reinserted the portion of my skull over the right temporal lobe, I was still very foggy but the trauma that my head endured caused significant pain. I was on a series of anti-pain medications that were helpful but I was also very anxious to get home. The surgery was immediately deemed very successful and everything went as planned. I have not had a seizure since! 

The part that I was unprepared for was the emotional recovery. Little did I realize this would be the hardest part of all. I was miserable and not very nice. I left the hospital a week after surgery on heavy pain medication, feeling very anxious. I suffered from significant depression unlike anything I have ever dealt with before or since. During recovery I was downright miserable, fortunately, I was surrounded by my family who was very patient and supportive in helping me through these emotions. My parents, in-laws and Ann were there to make sure the boys and I were okay and they really helped me through this most challenging time. Upon returning home I was lucky that Ann kept me focused on the fact that we had so much to celebrate and focused me on getting better. I also read a blog of someone else who had a similar surgical procedure who went through a similar bout of depression. I contacted this person and they assured me that time would heal these wounds. This was very helpful to hear because I was very scared that this emotional pain was a new permanent reality. 

Three weeks after surgery I was emotionally recovered from the depression, thanks to the patience of Ann and some helpful anti-depressants, I was ready to go. The hardest part was over. My first day out of the house was January 10th, 2012. I attended my Bergen Leads class and my first real test was participating in a public speaking exercise with a fellow classmate in front of the rest of the class. The facilitator was doing a role play and chose me and one other classmate to participate. I was very nervous and the facilitator was unaware that I was recovering from brain surgery. But, I am glad I was chosen because I did okay and this gave me the confidence that I needed to get back to work. I started back to work the following day and initially worked three days a week and stayed home for two. In the beginning of February I was back to work full time. As I look back I am surprised that I went back that quickly. Three weeks after having a major brain surgery I was working again, that doesn’t seem possible. While it probably wasn’t the best idea I think working to help others helped me help myself.

Returning to the question of why I had the surgery, the more detailed answer is, that it was much more about my kids and family than it was for me. Over the Holidays, my children reminded me that Christmas was about something bigger than ourselves, a day doesn’t go by that I am not thankful for that. Because I realized this, I am healthier today. I owe my family a world of gratitude, because had I not been forced to look beyond myself nothing would have changed. It is because of them that I made this choice. When it became about them and not myself, it became an obvious decision instead of anything to debate.

This journey has been so interesting and rewarding. I made the decision to have the brain surgery to eliminate seizures because I was concerned about my health and that of my family. As a result, I learned more about the value of putting others above self. When living life this way, you always receive more than you have been given.