Brain Tumor Patient Education
Mark your calendars now!
The fifth annual “Playing for the Cure: Brainstormin” is being held on Friday, September 14, 2018 at the Stony Creek Brewery in Branford, CT from 6:30PM-11:00PM. Please join the Cusano Family once again for a night of lively music with Heat, Connecticut’s favorite cover band that will be mixed and produced by Parkville Sounds, LLC! Come and grab a frosty beverage and be amongst the company of great friends as we gather to raise money in the fight against brain tumors.. Ticket prices, entertainment and food truck options will be announced on The Cusano Family Brain Tumor Fund website as soon as the details are finalized.
Chris' Story - "Choosing to Give Back"
“Adversity. We cannot direct the wind, but we can adjust the sails.” -Anonymous
In my office hangs a picture with this quote, and I read it every day to not only remind myself of all that I have overcome, but also to remind me that no matter the struggles of yesterday or of the past, I will continue to persevere.
As a 23-year old, I was enjoying life and preparing to embark on my career to achieve my dreams of earning my juris doctor degree. Yet, life had a curveball that was more than I could have ever bargained for headed for me.
The date was May 27, 2007 and I was supposed to be enjoying myself with family and friends at our annual cookout. Unfortunately, I was stuck in the house, coping with an unbearable headache. By nighttime, the pain had subsided and things returned to normal, or so they seemed. However, another troubling symptom arose a few days later – I was seeing two of everything.
I made an appointment with my optometrist to evaluate the issue and I underwent a series of tests. The conclusion, or diagnosis at this point, was that I had diplopia, commonly known as double vision and was prescribed prism glasses to wear. I was assured that the double vision was not a major cause for concern, but blood work was ordered to rule out Lyme disease. By what I now refer to as my first "unlucky break," the test came back negative for Lyme disease and within a few weeks of wearing the glasses, the double vision had resolved. The glasses were never needed during my first year of law school – at least until I returned home the following May.
In law school, the saying is “Year one, they scare you to death; year two, they work you to death; and by year three, they bore you to death.” It was true. I earned by B.A., cum laude, from the University of Connecticut with a degree in political science. I took a year off in between UConn and law school, working for a law firm in Hartford, CT as a lobbyist.
I enrolled in Roger Williams University School of Law in 2007 and made a great group of friends, in addition to meeting the girl I would marry six years later. Along with her, our group of friends supported each other during the rigors of law school. However, when I returned home to Connecticut after that first year, the double vision returned. When I used the prism glasses that were prescribed a year earlier, they did not work - I was still seeing two.
After multiple visits back to my eye doctor and upon my request, I was referred for a second opinion to a neuro-ophthalmologist on June 27, 2008. He immediately told me he suspected something was wrong and ordered me to go directly to Yale-New Haven Hospital for a MRI.
When the phone rang on July 1, 2008, I, along with my parents, were advised to come into the neuro-ophthalmologist’s office to discuss the results. I learned that my MRI showed a large intraventricular tumor – most likely a central neurocytoma and based upon the size as it appeared on the MRI, it had likely been growing from anywhere from three to six years. I was immediately sent to Yale-New Haven Hospital, where I was unnervingly greeted by a priest, a nun and then Dr. Joseph Piepmeier and his staff.
My doctors and the medical staff were amazed that I did not present with more symptoms and that I was even functioning at the moment. Emergency surgery was scheduled for the next day. On July 2, 2008, I underwent a craniotomy to remove the tumor. The operation lasted approximately nine hours as the tumor had pushed my brain to both sides of my head and was suffocating the veins. Though the tumor was successfully removed, the tumor caused hydrocephalus and swelling around the brain. Post-operatively, I did well between days one through three, but on day four, I suffered a setback as a subdural hematoma formed, requiring emergency surgery. To complicate matters, I developed Pseudomonas aeruginosa (a type of bacteria) and was required to remain in the neuro-ICU for an additional week-and-a-half. I was finally released home on a heavy dose of intravenous antibiotics and steroids.
My life had gone from law student in May to a shell of my former self within a matter of a month-and-a-half. My comprehension skills were gone - I lost the ability to talk in full sentences, I could not write on my own and I had great physical deficits on the right side of my body. I was sent to Gaylord Rehabilitation Center where I attempted to relearn to read, write, talk and build back the physical strength I lost. A neuropsychological exam was ordered and the results showed that I had severe cognitive disabilities and these were likely permanent in nature. My quest to earn my juris degree was likely over.
After consultation with my neurosurgeon, a joint decision was made with my medical staff, and a third surgery was scheduled to implant a VP shunt in an attempt to relieve the hydrocephalus and reduce the swelling. In talking with my doctor, my family and I learned that after insertion of a shunt, approximately 80% of the patients will see improvement in their cognitive function within 6 months and 2 years. About 15%-20% of those patients will regain total cognitive function within 6 months and a very small percentage, 1%-2%, will experience an immediate recovery overnight.
On September 8, 2008, I underwent a third operation for the insertion of the VP shunt. The results were near miraculous. I woke up the following morning, fully able to communicate, read, write and the right sided deficiencies on my body were vastly improved. I was the 1%. By the following January, I returned to law school and ended up walking with my classmates at the Commencement ceremony and completed my academic work at Quinnipiac University School of Law.
While the prognosis for a neurocytoma is generally good, mine was described as “atypical”. Since 2008, I have undergone: (1) a shunt revision in 2012; (2) a gamma knife surgery in December 2013 to destroy a small portion of the tumor that was unable to be removed during the first surgery and was being monitored for growth; and most recently (3) a craniotomy in January 2015 to fully remove the regrowth of the tumor as the gamma knife surgery did not destroy the remaining tumor as expected. Additionally, I have suffered multiple seizures since 2009, all of which altered my life in various ways (for example, being dependent on others for rides as I was not allowed to drive for a period of time after each seizure). Since changing my medication to Keppra, I have been seizure free for two years.
Without a doubt, my adversity over the years has led me to my passion, and that is being an advocate. I am the Vice President of the Connecticut Brain Tumor Alliance, a group whose mission it is to raise awareness of brain tumors and to provide hope and support for patients and caregivers. This meaningful work is very rewarding and enriching, and I feel honored to work alongside such caring and compassionate survivors and caretakers.
In collaboration with Dr. Piepmeier, my family and I established The Cusano Family Brain Tumor Fund, a gift fund designed to give back and promote brain tumor research and awareness. Donations are raised from an annual concert and are directed towards clinical and laboratory research in order to find the cure. Since the first concert in 2014, the Cusano family has donated over $100,000 for the Yale Brain Tumor Center and we remain hopeful that together, the cure will someday be found.
- Chris' blog can be read here at greymattersblog.com
- Update “What is Chris Planning?”
- Elected Vice President of the Connecticut Brain Tumor Alliance and will continue to advocate for, and be a resource to, brain tumor patients
- The fifth annual “Playing for the Cure: Brainstormin” is being held on Friday, September 14, 2018 at the Stony Creek Brewery in Branford, CT from 6:30PM-11:00PM. Please join the Cusano Family once again for a night of lively music with Heat, Connecticut’s favorite cover band that will be mixed and produced by Parkville Sounds, LLC! Come and grab a frosty beverage and be amongst the company of great friends as we gather to raise money in the fight against brain tumors.. Ticket prices, entertainment and food truck options will be announced on The Cusano Family Brain Tumor Fund website as soon as the details are finalized.