Survivor shares story of hope to raise awareness of brain aneurysms
Since suffering a brain aneurysm in 2013, Debbie Dunn can’t believe the number of people, even locally, who stand as survivors with her.
But there is so much to be learned about brain aneurysms that she spearheaded her own support group known as the Joe Niekro Foundation Support Group of Rome, which has about 12 members. The chapter first started meeting about a year ago. September is Brain Aneurysm Awareness Month.
In order to raise awareness, and funds for research, the Rome chapter is hosting its first annual Spaghetti Dinner Fund-raiser from noon to 5 p.m. Sunday, Sept. 25 at Aquino’s Family Restaurant, 910 Floyd Ave. The chapter meets regularly on the second Monday of every month, from 5:30-7:30 p.m., at the second floor classroom of Rome Memorial Hospital, 1500 N. James St.
Tickets for the fund-raiser may be pre-purchased online at https://www.joeniekrofoundation.com/events/spaghetti-dinner/ or bought at the door for $10 per person. In addition to spaghetti, there will be salad, bread and meatballs. Carry out will be available. The event will also include a basket raffle and a 50/50 drawing.
A portion of the proceeds will go to the Deshaies Stroke Research Foundation, a non-profit organization created to support stroke research and educational efforts in the community. Grants provided through the DSRF fund scientific and clinical research targeting stroke, promote community prevention and awareness campaigns, investigate cures for stroke and support initiatives aimed at improving the well-being of stroke victims and their families.
“Funds raised at the event will go towards brain aneurysm, AVM (arteriovenous malformation) and hemorrhagic stroke research and awareness supporting the Joe Niekro Foundation’s Patient Advocacy Program, as well as the Deshaies Stroke Research Foundation,” Dunn said.
The Joe Niekro Foundation was started by Natalie Niekro, daughter of the all-star Major League Baseball pitcher, who lost his life to a brain aneurysm back in 2006.
“We’re hoping we can bring awareness in the community,” Dunn said of her support group. “Since suffering my aneurysm, I’ve been talking to people in the community, and it’s amazing how many people have had them.”
On July 21, 2013, the Dwight Avenue resident said she went with a friend to Price Chopper and remembers being in the cereal aisle when her head “felt funny,” or foggy, and she felt as though she needed to lie down for a nap.
“My girlfriend came back from where she was (in the store) and saw something in my face and asked what was wrong,” Dunn recalled. “She said, ‘I’m calling an ambulance,’ and I said, ‘You’re not calling an ambulance. I’m fine.’ I went to the restroom before we left and for some reason, I have no idea why, I told her if I don’t come out after a while I may be having a brain aneurysm so you better come get me.”
Dunn, who was 54 at the time, was able to make it out of the restroom and got to her friend’s car in the parking lot, when suddenly she said she experienced “brain freeze.”
“It was on the right side of my head and it went down my ear, neck and arm and that’s the last thing I remember,” Dunn said. “I never lost consciousness. My friend got me to Rome Memorial Hospital. It was later that I remember that a few weeks before, I had what I thought was double vision, which can be a sign of a brain bleed. I was playing Scrabble with my friend and asked if she had gotten a new dictionary, because I said I could see dark letters and lighter letters of the same word.”
The brain freeze Dunn suffered turned out to be her brain aneurysm rupturing. She said it was actually a good thing that her friend brought her to the hospital instead of an ambulance, otherwise the response may have taken too long and she never would have survived.
When arriving at the hospital, “the doctors didn’t think I would make it — they gave me a 30 percent chance of survival,” Dunn said. “I was worried. I don’t even remember the doctors in the emergency room. I don’t remember anything until about a month later, after I got to Syracuse.”
Dunn was brought to Upstate University Hospital, where Dr. Eric Deshaies, a high-profile brain surgeon known as the only surgeon in central New York, and one of 125 in the nation, trained to perform both minimally invasive brain procedures and traditional open neurosurgery. Dunn touts Deshaies for saving her life.
“I got to Syracuse and they had to cut my skull open. I was in the hospital from July 21 until the end of August,” Dunn said. “I was one of the lucky ones, because I got out sooner than most people do. When I did get out, I had to have someone care for me 24 hours-a-day, and my sister, sister-in-law and niece helped take care of me. I lost my left side.”
“When I was still in the hospital I was in bad shape, and had to do a swallow test,” she added. “I was then in physical therapy once I got good enough. I honestly don’t remember a lot until I got into rehab, and I had to walk with a walker or cane.”
Dunn was well on the road to recovery when in December, Dr. Deshaies ordered an angiogram and discovered that her aneurysm had actually come back.
“I got my yearly CAT scan in December at Mohawk Glen…I went in and the nurse practitioner said I needed an angiogram — Dr. Deshaies thought something was going on, and he felt I needed it,” she said. “It turned out the clip (of the aneurysm) came open a tiny bit and blood filled up, making it bigger than when it burst. So Dr. Deshaies said he had to go in and try to coil it. I had to go on massive blood thinners and be awake during the procedure so I was able to talk to him. The surgery was a success, and now I have three coils. I’m his 1 percent — he never saw this happen to anyone.”
Having suffered an aneurysm has actually “changed” Dunn’s brain, she said, and she and others have had to learn to adjust to some personality differences.
“I was a very quiet person. If I had an opinion I kept it to myself, but now I can’t stop talking,” Dunn laughed. “I’m definitely different and it’s hard for people who have been around me so many years. Our families love us, but they don’t understand when we” go through these changes.
That is why Dunn said she started the Joe Niekro Foundation Support Group of Rome so that not only sufferers of brain aneurysms can come and talk about their experiences and support each other, but family members may also learn how to cope and care for a loved one.
“We’re trying to meet with the mayor and Sen. (Joseph A.) Griffo (R-47, Rome) to get legislation where like a mammogram, insurance coverage can be the same for an MRI, MRA (Magnetic Resonance Angiogram) or CAT scan,” Dunn said. “There’s pre-screening with mammograms and for the prostate, but not for the brain.”
“It’s expensive for the insurance companies, but it’s much more expensive when they pay what they do when the aneurysm ruptures,” she said. “When mine came back and it was caught early, I just spent the night in ICU and I was sent home from the hospital the next day after the coiling. And a lot of aneurysms are actually caught by mistake.”
Dunn asks that those who are unable to attend the fund-raiser dinner Sept. 25, but who or know someone who has suffered an aneurysm or other traumatic brain injury, to display a burgundy ribbon for awareness. For more information about the spaghetti dinner or her group, contact Dunn at 269-1602 or online at RomeNY@joeniekrofoundation.org.Posted on Sunday, September 18, 2016