Great fortune. How do you put a price on improving your health to the best it’s been in 22 years? Priceless. And at the same time you are blessed to be in a position to help others with what you’ve learned...(read more)
Vera at Safai@aol.com
Her son Matthew had the VNS
Taken from the Faces Summer 2004 newsletter
Barbara at email@example.com
Right temporal lobectomy
Joan at firstname.lastname@example.org
Partial right temporal lobectomy
Richard at email@example.com
Right temporal lobectomy
David Kirschenbaum at firstname.lastname@example.org
Right temporal lobectomy
Thank you Dr. Devinsky, Dr. Doyle, the team of professionals at NYU, and everyone who came before me in the search for an answer to controlling their seizures.
Brain surgery was as likely for me as was walking on the moon. Never. That’s for other people. Just like someone who you see in a wheelchair or any other unfortunate situation. Never would that be me.
I learned and now hold onto dearly the belief that bad things DO happen to good people; so we must maximize every day. We owe it to ourselves and to the less fortunate who would trade anything to be in our position.
At 22 years old I started “spacing out” about every three weeks. I’d make a moaning sound, go to my shirt collar, and after a few seconds “be back” but it would take a minute to realize the day, time and location. I was convinced all I had to do was go back to the gym and “work it out of me”. This wasn’t the first time I was wrong about my seizures.
I went from the general practitioner, to the neurologist, to the University of Virginia’s epilepsy center for two weeks of in-patient testing (at a former tuberculosis hospital in the Blue Ridge Mountains) since there were no such units in New York at the time, and eventually to Columbia Presbyterian Hospital. After many years, virtually every drug available, some drugs not available in the U.S., and many protocols, I accepted that seizures would be part of my life, but not my life. It’s my “allergy”, every now and then I space out. I don’t drive but that’s ok living in NYC.
Ten years ago, after ten years of failed drug treatments, the doctors at Columbia Presbyterian were telling me to investigate surgery. Nine years ago they knew to no longer bring up the subject. No one was going to take out a portion of my brain. I’m not that smart to begin with; I need all of that stuff that I brought with me into the world.
Two years ago, my girlfriend at the time pushed me from denial and to address my life with epilepsy. See what else can be done she insisted. I was determined to find the chemical solution and came to Dr. Devinsky looking for the magic potion that must have been overlooked. Otherwise, it would mean surgery, and that wasn’t for me. It’s for other unfortunate people.
When I began to understand that no panacea was going to control my seizures if every medicine and multi-medicine combination had been used for ten years, I had to face this “new” fact which I had not realized of before. My seizures will likely get worse, damage my brain, which will possibly further affect my memory, my ability to think as clearly as I’d like, and my emotions since the seizures were in the right front temporal portion of my brain. Which stunk worse; a life with seizures or brain surgery?
I remember meeting with Dr. Devinsky for the third time to discuss the surgery, likely the third time asking the same questions. I began to think “are the seizures affecting my ability to think clearly in terms of this huge decision?” I didn’t want to look back in ten years and be sorry I didn’t have the surgery. Two of Dr. Devinsky’s many wise comments will always stick with me; one was when I was concerned about a scar and his saying: “Richard, if you’re worried about a little white scar on the side of your head...” That made me realize and wonder how these seizures might be affecting my ability to think things through.
I also like when after asking the same question over again and again, though in different words, Dr. Devinsky smiled and said “as they’re wheeling you in to the OR you’ll say, ‘wait, one more question’”. The levity helped and also put things in perspective.
Dr. Doyle. The man will fix your brain and if your heart had any doubt about how good a fellow human being can be he’ll mend that, too. I couldn’t help but think that this man is going to have my brain in his hands. The more I got to know him, the more confidence I had that if there was anyone I wanted to be holding my brain, it’s Dr. Doyle.
The man is brilliant and compassionate. He answered every question my family and I had with his heart and went on to answer things we had not thought to ask. He’s touched my life more than anyone ever has. I guess since he’s also the only person to touch my brain, why not?
Fast forward a Wada test, video EEG monitoring, MRI, CAT scans, PET scan and some other stuff. Show time.
Nervousness unlike anything else can be save life threatening experiences. I require two surgeries, the first to place “grids” into my brain to further pinpoint where the seizures are originating. Then, go back in and remove the “bad area”. Pardon the technical jargon.
It’s easy and possibly selfish to ask yourself as I did while in the hospital bed after the first of my two surgeries “why did G-d choose me?” Or, why does he choose someone to be in a wheelchair or die before his or her time” I’m not a particularly religious person but found myself asking this question often. Rather than appreciating the fact that I am one of the fortunate 10% who are candidates for surgery, I wanted the answer as to why I was in the position of an invalid at 44 years old with wires coming out of my brain and head.
I remember Ed wheeling me into my corner in the unit near a window and his warm attempt to find something positive of the situation. He pointed out that I’m able to see helicopters taking off and landing outside. This is what it’s come down to. Watching helicopters, bed pans and sponge baths. It’s not supposed to be me. Someone else. I was a shell of myself.
One week later I “gave” the doctors the seizure they were waiting for in order to better determine the location of the seizures. Within a few hours, I was back in the OR. I remember being wheeled in and seeing Dr. Doyle and holding his hand. I didn’t want to let go. Please Dr. Doyle, take good care of me. I knew he would.
I also knew my parents and two brothers were at my side the entire time. They came to New York from Florida, Texas and Colorado to be with me 24/7 for as long as I wanted them to be here. Your support group is critical at a time like this. The two surgeries amounted to two weeks in the hospital and then another couple of weeks on my back at home. Shortly thereafter, I’d go to my office also in Manhattan and work a couple of hours a day every other day. About two months after the surgery I was back almost full time.
Candidly, the most difficult part of the “process” was depression. As a result of the surgery the chemicals which cause depression were unleashed and that was a challenge. About three major crying experiences over a month’s period. This was effectively resolved with therapy and medicine. While not something anyone wants to experience, the upside of no longer having seizures is worth the trade off of a few weeks of depression.
March 23rd was the second surgery and I’ve not had a seizure since. I now have my driver’s license back after a 22 year hiatus. I have a newfound appreciation for what is important and to value it every day. How much of it is because I no longer have seizures affecting my brain versus the process? I don’t know, but I no longer have to worry that seizures are damaging who I am or how I think.
I promised myself to help others with the unique education I received as a result of the expertise, guidance and compassion of those as Drs. Devinsky and Doyle. The best lesson I learned and I want to pass on: appreciate what we have and seizures may be part of your life but it’s not your life.
For children who may be facing difficult times today due to seizures, they should know that just like the boy on the wrestling team, the dues being put in now will help him or her later in life. It may be hard now, but it will pay off later by being a stronger person.
Fortunate. I’ve gained a lesson of what’s important, no longer have seizures and feel the best I’ve ever felt. Appreciate what you have because there are millions of people who would like to be in your position, whatever your current difficulty might be. Even if it is uncontrolled seizures, yes that stinks, but there’s worse so appreciate the good that you do have while working on getting better. Seizures may be part of life, but it’s not life.
A year ago I did not think I’d be able to say I achieved a marvelous blessing. Yes, thank G-D I’m seizure free for the first time in 22 years. I used to have complex partial seizures approximately every two weeks. Never more than 3 weeks seizure free. With the inspiration, guidance and confidence instilled in making the right decision given to me by Dr. Devinsky and then the incredible compassion and obvious brilliance of the remarkable Dr. Doyle, I am able to share this life changing experience and help others as a result. I look forward to driving to meet with other people who have seizures and help them face their challenge.