- Lisa Robarge's late mother and her older brother experienced brain aneurysms.
- Robarge talked with state representatives in March to press for more public funding for research.
- Robarge wants more awareness that some aneurysms are genetic.
The pain hit like a thunderclap.
Last August, Lisa Robarge was getting ready for work when she suddenly was struck with a severe headache. She said doctors told her the problem was her sinuses − nothing unusual for Ohioans.
They were wrong.
Robarge was in the throes of a brain aneurysm, a genetic condition that led to her mother's death in 1974 when Robarge was just 7.
The Canton woman says she wanted to share her experience to bring more attention to the problem.
"I'm not trying to scare people. I just want to inform them," she said.
In 2021, the Ohio Department of Health reported there were 2,914 traumatic brain injury-related deaths, 11,470 hospitalizations and 101,176 visits to doctors' offices.
Some well-known people who have experienced brain aneurysms are President Joe Biden, film/TV actress Sharon Stone, musicians Quincy Jones and Bret Michaels, "Game of Thrones" star Emilia Clarke, late film actor Tom Sizemore, late TV actor Guy Williams, and the late Rep. Stephanie Tubbs-Jones of Ohio.
Robarge, 57, said her older brother had what is known as an AVM, or arterial venous mass.
"He had surgery for that in Pittsburgh over 30 years ago," she said.
The first sign of trouble was constant sinus headaches
Robarge said her first sign of trouble was constant sinus headaches.
"I thought it was due to the changing weather," she said. "For two months, June and July of last year, I kept having all these attacks. I would get a little off balance every now and then and I just thought, you know, I'm getting older, I'm getting clumsier. I went to my doctor about it and all they said was, 'You need to go see an ear, nose and throat person.'
"But knowing my family history, someone probably should have done an MRI. That probably could have found the aneurysm before it burst. This is what I'm trying to get out, to let people know because I know there are people out there who have had aneurysms, and their family members might not know if it's hereditary or not."
On the morning of Aug. 1, Robarge was getting ready for her job as director of human resources at Siffrin, where she has worked for 14 years.
"I woke up and started to go to the bathroom and I had a tremendous headache," she recalled. "They call them 'thunderclaps.' I don't even know what that was, but I could barely walk. I was sick to my stomach; light hurt; moving hurt. I just thought, 'Oh my God, this is the worst headache.'"
Robarge said she tried to lie down on the bathroom floor because it was cool.
"But I couldn't even get down to the floor without almost getting sick to my stomach," she recalled. "So, I got back up and started to go back in the bedroom because I thought, 'I'll just go back to bed, sleep it off.' On the way back to my bedroom — and I know a lot of people don't believe in this — but my father passed away when I was 18, OK? On my way back to the bedroom, I saw my mom, and I saw my dad, and they both looked at me and said, 'If you go back to bed, you're going to die; don't go back to sleep.' And I knew right then and there that I probably had an aneurysm."
Robarge said she told her husband to take her to the emergency room at Cleveland Clinic Mercy Hospital.
"When we got there, I was crying; I was in severe pain," she said. "They told me I had to sit in the waiting room because they didn't have an open bed. I said, 'How long was I in the waiting room?' He said it was an hour and a half. I remember hearing the doctor say, 'We have to do a CAT scan, she might have an aneurysm.' And I wanted to yell, 'I do,' but I don't remember anything after that."
Robarge said she and her husband were sent to Cleveland Clinic Akron General.
"We have nobody here in Stark County that can treat aneurysms that I'm aware of," she said. "That's why they sent me to Akron. They told my husband, 'You're going to take her to Akron General, and if they don't have someone to do it there, you're going to have to take her to Cleveland.'"
Robarge's aneurysm was 'coiled' using a microcatheter
Dr. Firas Al-Ali, a neurointerventional surgeon with Summit Neurodovascular Specialists, "coiled" Robarge's aneurysm using a microcatheter.
In 2003, Al-Ali performed the world’s first live aneurysm coiling online.
"He went in through my groin ... they inject it right into the aneurysm and it just curls around and (isolates) the clot so the blood can't go through it anymore," Robarge said.
The coil, she added, is still in her brain.
Al-Ali, who has done more than 1,000 such procedures since 2000, said the vast majority of brain aneurysms are not hereditary.
Large clots, he said, are removed as soon as possible when a patient arrives at the hospital.
Al-Ali recommends pre-screening under certain conditions.
"Only if there is a history of more than one person in the family; otherwise, it's not necessary," he said.
But he added that there's nothing anyone can do to prevent an aneurysm.
After 26 days in intensive care, Robarge said she spent a week at Aultman Woodlawn Rehabilitation in Jackson Township as a precautionary measure, and to help her regain her balance.
Twenty-five percent of people with ruptured aneurysms die within 24 hours
Robarge knows she was fortunate. According to statistics she found:
"I have no paralysis. They wanted me to wait to go back to work full time, and I told them I would, but I lied," she said with a laugh. "I think I worked part time one week, and then I was up to 40 hours the next week."
Advocating at the Statehouse to increase funding
On March 14, Robarge traveled to Columbus on Brain Injury Awareness Day to speak with state representatives about the need for brain aneurysm research funding. Pennsylvania leads the four-state region, spending $21.92 per resident, followed by Kentucky at $10.74 per resident, Indiana at 91 cents per resident, and Ohio at just 5 cents per resident.
"I went to the Statehouse and we were to meet with state Rep. Jim Thomas (R-Jackson Township)," Robarge said. "Rep. Thomas was not there, so I met with his senior adviser and gave them that information."
Thomas confirmed that Robarge did met with his senior adviser in a meeting facilitated by Lauren Holly, executive director of the Brain Injury Association of Ohio.
"I spoke with Lauren Holly," Thomas said. "She informed me that Ohio's funding in this area is substantially lower than Indiana and Pennsylvania; and (that) her organization receives funding through the Ohio operating budget (in a line item) via Opportunities for Ohioans with Disabilities. I appreciate that Ms. Robarge and Ms. Holly have highlighted this issue for me. I will learn more and be a voice for additional preventative funding in this area."
Since her aneurysm, Robarge said her older brother and sister have undergone MRIs, with negative results.
"I also did genetic testing through the Cleveland Clinic to see if I carried any chromosomes," she said. "The doctor said since I didn't carry any, it's very unlikely that my sister or my brother do."
Robarge said she's learned some factors that might exacerbate risk and recovery, including smoking, hypertension and the use of birth-control pills.
"My mom, when she got hers, she smoked," Robarge said. "She had high-blood pressure, so she was on medication for that. I stopped smoking the day I had my aneurysm. I had just started on high blood pressure medication about three weeks before I had my aneurysm. I thought it was due to the stress at work, or stress with things outside the family or, you know, sinus headaches. I was also on Vyvanse for (an excessive sleeping disorder); it's kind of like an ADHD."
Robarge recalled a former high school classmate who recently died from an aneurysm.
"He had a wife and two young children," she said. "And I'm like, oh my God, I wonder if anybody said anything to his wife about what to look for with his kids; maybe it's hereditary. I think they need to know what to look for, and if your doctors aren't educating you on that, who's going to do it? So, the best way for people to know, maybe if they're worried, is to get a MRI if they have symptoms."
Reach Charita at 330-580-8313 or charita.goshay@cantonrep.com. On Twitter: @cgoshayREP.
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