Thank you
to all who read my first post! I am excited and thankful that you’ve
returned. I appreciate all that have provided encouragement and feedback.
After the
first post I started to consider how I was going to write the rest of the story. I enjoyed writing the first post, maybe I’ll even start to write
more often. While contemplating these things I received a call from my
Mother-in-Law, Betty. She is a huge supporter of mine but wouldn’t
have been afraid to critique it if it was terrible. I was happy that she took
the time to read the blog and enjoyed it. I think if I can help
someone else and people are enjoying it, then I have accomplished my goals.
The two
years after brain surgery were filled with some celebration and excitement as
we hit a variety of different milestones in being seizure free. It wasn’t
all celebrations, and this is the part of the story of brain surgery that I wish
to expand upon. Ironically, this part of the story involves my
heart. You will remember that one of the reasons for having brain surgery
in the first place was to keep the rest of my body healthy. It also involves
the importance of understanding family history.
While I
was in the hospital I had a number of routine tests to check that all the
conditions were right to move forward with surgery. One of the EKG’s showed
an irregular rhythm in my heart beat. A number
of cardiologists reviewed the EKG and it was determined that this abnormal
rhythm or arrhythmia looked like something called Brugada’s Syndrome. We
thought this was nothing but agreed that it was worth following up based on my
family history. Brugada Syndrome is identified by
abnormal electrocardiogram findings and an increased risk of sudden
cardiac arrest. Based on the fact that I had been on anti-seizure
medication that was known to have different kinds of side effects I didn’t take
this too seriously.
Three
months after surgery, I went back to see the cardiologist to check if the
arrhythmia was anything to be concerned about. After some further
testing, it appeared that I did have Brugada Syndrome. Since this
is a genetic condition, this information led to even further testing. We researched and learned that the NYU Langone Medical
Center had a Heart Rhythm Center that had a leading Cardiovascular Genetics
Team. As a result, my children and I, as well as other family members
starting seeing Dr. Silvia Priori and her colleagues on the Cardiovascular
Genetics Team. I can’t say enough about the tremendous quality of service
and care we received from Dr. Steven Fowler and Dr. Marina Cerrone. After
further tests, including genetic testing, they confirmed that my Father and I
have Brugada Syndrome. I wasn’t too concerned because the way that I
understood it, I was low risk and asymptomatic. Initially, the team at
NYU thought that I should just continue to be monitored as should my sons. After a few months the doctors changed their recommendation
and told me that the best decision for my family would be to put in an
Implantable Cardiac Defribulator (ICD). An ICD is a small device that's
placed in the chest or abdomen. Doctors use the device to help treat
irregular arrhythmias. An ICD uses electrical pulses or shocks to help
control life-threatening arrhythmias, especially those that can
cause sudden cardiac arrest.
This
recommendation was alarming to say the least. My initial thought was not
to be worried. My risk was no greater than my chances of getting hit by a
car while crossing the street. After the conversation with the doctors, I
began to understand that my brother, Tim, who as I mentioned in the last post
died in 2002 at the age of 21, was also asymptomatic and had low risk. While
we couldn’t confirm that he died from Brugada Syndrome, his history was all we had. After
learning about Brugada Syndrome I assumed that I would know I was in danger because
I would be dizzy, or I would feel something to alert me that I was having
symptoms. In this case, and maybe in the
case of my brother, Sudden Cardiac Arrest is
the symptom. The combination of the information we gathered through the
testing before brain surgery, genetic testing and family history provided me
with enough information to realize that putting in an ICD is probably a good
precaution. While I hope it is never put to use, in June of 2013 I had
the ICD put in and it serves as an extra safety net to make sure I am okay.
It is my
opinion that in many ways Tim helped save the lives of future generations of
our family. Maybe, he even saved my life.
We will be more diligent with our children as a result of this
understanding. As a result of having this
device, I can be sure I am as healthy as I can be. I figure that I am kind of
like a computer or phone that continues to get upgrades with each model that
comes out. The most recent model of Paul Casey includes a little less
weight in the brain and a mechanical upgrade to ensure a stronger heart.
The story of brain surgery is lengthy and kind of comes full circle. I went in
for brain surgery with concerns about stress on my heart related to the
seizures and now my heart is stronger than ever. Brain surgery was
important for more reasons than I ever could have realized.
In
conclusion, I want to highlight the value of researching medical issues
thoroughly in order to take care of yourself and those that you love. In
our case we have been very lucky at NYU, St. Barnabas and Morristown to have
doctors who are very thorough. We worked with medical professionals to be
an advocate for ourselves and to obtain all the information needed to make the
best decisions possible to be as healthy as possible. I encourage everyone to
be their own best advocate and to do your best to acknowledge and having a strong
understanding of family history. Most importantly, to do the things necessary
to ensure that you are as healthy as you can be for yourself and your loved
ones.
Until
next time…
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