Patient, family celebrate 10 years since life-changing epilepsy surgery
Ten years ago, Glenn had life-changing epilepsy surgery. Today, he remains seizure free and is able to partake in typical activities teenagers enjoy, like basketball and bowling. His mother, Lisa, recently shared the family’s journey:
“On the morning of June 22, 2002, when Glenn was only 14 ½ months old, I found him in an unexplained seizure. He was an otherwise healthy infant, so this was a complete shock. Next thing I knew, he was being put on Survival Flight with a destination of C.S. Mott Children’s Hospital. It was the most frightening day of my life.
At the end of a week stay at Mott, he was diagnosed with Tuberous Sclerosis (TS). He had many seizures throughout his childhood that were somewhat brief and stopped. He was on different anti-seizure medications throughout his childhood as well. In 2008, Glenn’s seizures had changed. They no longer stopped, and Glenn had status epilepticus (a seizure that hits a 5-minute mark, or more than one seizure within 5 minutes) each time. I found myself calling 911 about every 4-6 weeks. The anti-seizure medications did not seem to stop the seizures. He would then be flown on Survival Flight to Mott and admitted, staying for days at a time. He was intubated some of those times, and I almost lost him more than once.
Glenn missed a lot of school due to his hospitalizations. He missed out on quite a bit of “being a kid” during his childhood years. Due to TS being a multi-organ involvement condition, Glenn spent much of his time at various specialist appointments, imaging and other tests. He didn’t spend much time outside in the summer, as heat was one of his seizure triggers.
I was nervous about going anywhere because I thought Glenn may have a seizure. How would I deliver Diastat effectively in a car? Diastat may not work again. What if he seized at the grocery store? How quickly could EMS arrive at my car in a traffic jam?
In 2010, with the help of Glenn’s neurologist, Dr. Joshi, and neurosurgeon, Dr. Garton, I decided that epilepsy surgery would be seriously considered.
Glenn had grids placed on his brain before his surgery and was in the hospital for a long time before he had a seizure the doctors were looking to capture. Thank goodness his tumors were found to be operable. Glenn spent most of the summer in the hospital, much of the time in the pediatric intensive care unit (PICU).
I have trouble finding the words to express the joy I feel today as we quickly approach Glenn’s 10-year milestone without a known seizure. I don’t often use the word “miracle,” but I really think this surgery was. Even more so, is the fact that pre-op, I was told by Dr. Garton that Glenn may experience a deficit in his peripheral vision due to the resection (removal of tissue in part of an organ) in the occipital lobe (one of the four major lobes of the brain). To this day, we don’t see it! (He has regular eye exams at Kellogg Eye Center.)
I am so grateful to and thankful for Dr. Garton and Dr. Joshi. Glenn’s epilepsy surgery was truly life changing for us.
Thank you, Survival Flight, for all you do. Thank you for helping to save my son’s life, more than once. Thank you for coming to visit us in Glenn’s hospital rooms. That meant more to us than you’ll ever know.
I have extreme gratitude to the people of C.S. Mott Children’s Hospital. I cannot stress enough the kindness and professionalism of these people. I can’t thank them enough for the care they gave (and still give) Glenn. They took care of me, too. The support and willingness to help meant (and means) so much. Nurse Helen’s dedication and support throughout the years, and even beyond her retirement, will never be forgotten.
Last, I would like to thank the people of (then) Southshore Hospital in Trenton, MI, where EMS first took Glenn, and share my sincerest appreciation of EMS in Gibraltar. We may have lost Glenn if it weren’t for their extremely quick arrival at our house.
Glenn’s mom, Lisa”