arteriovenous malformation (AVM)
Gerald remembers the words of his doctor: "Do you realize how serious this is?"
Gerald said yes, he did. His doctor told him frankly that he could go to New York or Europe for treatment at one of the most famous neurological surgery centers in the world. But Gerald, only 25 years old, decided to stay in Cincinnati. He decided to have the large arteriovenous malformation in his brain treated by Dr. Stewart Dunsker, a Mayfield neurosurgeon.
That was more than 30 years ago. Today, Gerald looks back on his experience as would someone who escaped a fire but lost his home. He survived the life-threatening AVM, and he survived the life-threatening surgery. But the AVM took things from him, including his career in mechanical drafting, part of his visual field, his ability to drive, and his love of reading.
But Gerald has done more than just survive. Intelligent, adaptive, and self-sufficient, he works full-time. He gets everywhere by bus. He lives with his deficits and rises above them. In short, he is Mayfield Strong, a living testament to Mayfield's commitment to the art of neurosurgery and a tribute to his own resilience and ingenuity.
"It's something you deal with," Gerald says. "It's a gradual process. It doesn't get better overnight, but as time goes on you have fewer and fewer bad days and more and more good days. You're continually improving. You can see it as devastating or as an opportunity to improve. That's the way I ended up looking at things."
Early signs of trouble
Gerald was a high school sophomore when he began having symptoms. "If I got up quickly, I got a dark haze over my whole visual field," he recalls. "My eyesight would fade out and come back. I remember standing up in the kitchen and falling over backwards for no real reason. We never sought medical advice; it was just an odd thing that came about out of nowhere. A year or two later I started getting headaches in my right temple. They were preceded by a red flashing on the left. I came to realize that if I saw that light flashing, I could expect the headache, too."
Gerald eventually saw a doctor and was treated for migraines. But the headaches worsened and became more frequent as the years went by. In the early 1980s he began having episodes of "heavy déjà vu." He remembers them as a vignette that would replay in his head. "But it was not an event. It was like remembering a dream loaded with an anxiety and high emotional background feeling. I had the same type of feeling over and over, a feeling of impending disaster, but the scenes could change. So I thought it was a psychological thing. That's how I interpreted it."
For a year and a half Gerald saw a psychiatrist. But the déjà vu persisted and was finally given its correct name: a seizure disorder. In April 1984 Gerald was referred to Dr. James Armitage, a neurologist, who promptly zeroed in on the correct diagnosis. "He knew exactly what he was hearing," Gerald says. "He ordered a CT scan with contrast dye. He knew what he was looking for." Looking back, Gerald wonders whether he could have acquired his diagnosis sooner. "You don't want to look for disaster," he says. "So maybe I was dragging my feet."
The CT scan and angiogram showed a large AVM, primarily occupying the parietal occipital region. Dr. Dunsker, who retired in 2002 after a 31-year career at Mayfield, wrote at the time that Gerald's progressing symptoms made "treatment of this large AVM important." Dr. Dunsker wrote further that the AVM should be treated initially with embolization, but that surgery would be needed to remove the remaining parts. "The surgery is dangerous, but he has significant risks if he ignores this progressing lesion," Dr. Dunsker wrote.
Dr. Dunsker explained the risks, which included vision loss in both eyes and problems with balance and memory. The alternative? "He said my condition would continue to degrade and I would eventually pass away," Gerald says. "Family members have said there wasn't a lot of time left. I was lucky to have it done."
Innovations in neurosurgery
The first treatment phase involved two embolizations that cut off blood flow to the AVM. Gerald recalls that they were "new, avant-guard procedures that no one was doing at the time; they were something over the horizon."
Thomas Tomsick, MD, hailed by some as "the Jedi Master of neuro-interventional radiology, performed the procedures at University Hospital, acquiring special catheters from California and then sealing off the blood vessels with pellets of cyanoacrylate, a fast-acting adhesive. "My dad was a chemical engineer," Gerald says. "He and Dr. Tomsick both had a picture of the molecule in their head."
Dr. Dunsker followed the embolizations with an occipital craniotomy and microsurgery at The Christ Hospital.
The third part, perhaps the most difficult, involved recovery. "I had problems recognizing family members," Gerald recalls. "The parietal lobe has a lot to do with geometrical perception. I couldn't put a name to a shape. I'd be in a car with someone, and a beer truck would go by. I'd say that's a car. It's like a car, but it's different. It's a truck. It would take me a minute to figure out what I was looking at.
"I lost the ability to easily do math in my head. My short-term memory is still terrible. I'll put something down and forget where I put it. I miss reading. I loved Isaac Asimov, Ray Bradbury. It was like sitting at a campfire and listening to someone tell a story when you read Ray Bradbury. Now I can't read fast enough to hold my interest."
Despite these hardships, Gerald does not consider himself handicapped or disabled. He describes himself as "half-blind, rather than brain-damaged."
The rewards of renewal
Meanwhile, he is regularly reminded of the brain's plasticity, its potential for renewal. "Every now and then something I lost comes back to me. I do something without thinking, and I wonder why did it come back now? You try to put your finger on it."
Gerald has been working at the same company now for more than 10 years. Eyesight and memory remain his biggest hurdles. "You have tricks that you teach yourself," he says. "I make lists. I have to choreograph everything I do before I do it."
"People at work see me as being kind of rigid, or unable to adapt to change. But I tend to script things, plan ahead on something I consider being important so that I can accomplish what I need to do. I do that with buses: I plan out night before which ones I need to get on, what change I need. So while it looks like I'm organized, it's the opposite. I have to plan around my perceived obstacles. It's kind of like playing chess every day. But after a while, you plan the planning into your regimen."
Gerald appreciates the skills that enabled him to survive. "I can't think of a better city to live in as far as medical accomplishments go. All of my doctors were so marvelous. I was impressed with Dr. Dunsker's discipline. How can you doubt the talent and ability of someone who can do that type of thing in the normal course of his day?
"The last time I saw Dr. Dunsker he still had a surgical cap on. He was doing his last consultation with me, and I got to say 'Thank you, Doctor.' There's no way to say how much you appreciate it. They said I could go to New York or Europe to seek out better care, and it was right here, five miles away from where I was living. You couldn't ask for a better result."
~ Cindy Starr
Hope Story Disclaimer -"Gerald's Story" is about one patient's health-care experience. Please bear in mind that because every patient is unique, individual patients may respond to treatment in different ways. Results are influenced by many factors and may vary from patient to patient.