This is a picture of Sonny with his daughter Riley. I was contacted by Sonny through Facebook. Not many things make me happier than hearing from someone who has had their seizures eliminated through brain surgery. Sonny had surgery and has been seizure free for almost two years. I wrote Epilepsy Unveiled for many reasons, one of the most important is to encourage others to fear seizures more than surgery and encourage them (especially if their seizures are out of control) to pursue brain surgery. The last thing I want to do is encourage someone with epilepsy to do the wrong thing so hearing from Sonny and others, like Chon, who have regained their life by eliminating seizures gives me the reassurance I need to continue with my mission.
Sonny was kind enough to write his story for the website. For anyone suffering with seizures the feelings, especially the depression will be familiar. I remember these times so well. I wish no one ever had to endure the agony that seizures create.
Sonny:
I was born in 1967
At 12 months of age, I had a fever of 103 degrees. It caused me to convulse. My mother was only 17 years old, she had no phone no car, no experience in a situation such as this and could not get my body temperature down.
She rushed me to the hospital, I was taken from her arms and given a shot of Phenobarbital. My body went lethargic, the staff noticed my right side had no response and other small changes of behavior and movement.
Doctors were unsure whether it was side effects of the medications or from the convulsion itself. So they did a Spinal Tap also and that came back negative.
Then my parents started noticing more daydream stages. In 1975 I went in for a deprived sleep EEG. With the results from this test he said to us that we need to start Dilantin medication. This was the beginning of my medications. Also my gums started getting the swollen effect, so I started taking the Folic Acid.
Throughout all of my Elementary to High School years were difficult with my grades. My memory has never been great because in the early 1980’s I went for an MRI and found a calcium deposit that hadn’t been there a year earlier. Two years ago we found I have Mesial Temporal Sclerosis.
Jobs were difficult at times. I fell from a house, been burned, actually had a seizure while boating in 1994 and being on a small river totaled the boat. So many ways I shouldn’t be here today. But there is a reason. To help others is what I think its all about.
Living into the cities I used a big bus system. Worked great. But I still was very depressed everyday. Having to need help all the time. Self dignity was running very low.
From the year 1999-2010 all I did is see more Neurologists for those 11 years. But in 2011 I saw one more Neurologist. He said “I was out of his course of care. “ He could goof around with my meds and or raise dosages but he could not raise my quality of life.
2011 – I went for 6 months and had every test possible here in Minnesota. April 2nd in 2012 I was admitted in for surgery. I had the grid implant in and purposely dropped med levels. One week later gave them two seizures. Next day I went in again and they took my Hippocampus. Now short term memory is very difficult but I always remind myself what we achieved with this outcome. Brings me to reality.
Returning from the hospital was tough for me. I was weak, off balance and lost 30 pounds. I still have not gained it back now after two years. I’m still trying to build more muscle back.
I had to do memory work and spelling words, word finding and matching pictures to words.
My stitches out in one week. Meds around the clock for a few weeks. But that all started to drop soon after. Then three months later we went back and I was impatient on getting rid of the lifting limits.
At six months no seizures, one year no seizures, Then 6 months ago I was given my license and started a new life and got back my self dignity. Working at a physical job I used to do, again. I really appreciate things differently now. Now on April 12th every year its my special day and even better than my birthday. Two years in a couple weeks.
God bless you!
Sonny
Thank you Sonny for your strength and sharing your story. I know it will help someone out there who is trying to decide whether to have the surgery or not.
Listen to Sonny whoever you are and get your life back if you can. The journey is well worth taking.
