Lisa Robarge wants more money for research into brain aneurysms

The pain came like a bolt from the blue.

Last August, Lisa Robarge was getting ready for work when she suddenly felt a severe headache. She said doctors told her the problem was her sinuses — nothing unusual for Ohioans.

They were wrong.

Robarge suffered from a brain aneurysm, a genetic condition that killed her mother in 1974. Robarge was only 7 years old at the time.

The Canton woman says she wanted to share her experience to draw more attention to the issue.

“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 deaths from traumatic brain injury, 11,470 hospitalizations, and 101,176 doctor visits.

Notable people who have suffered a brain aneurysm include President Joe Biden, film and television actress Sharon Stone, musicians Quincy Jones and Bret Michaels, Game of Thrones star Emilia Clarke, the late film actor Tom Sizemore, the late television actor Guy Williams, and the late Representative 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 over 30 years ago in Pittsburgh,” she said.

The first sign of trouble was constant sinus headaches

Robarge said her first sign of trouble was a persistent headache that originated in her sinuses.

“I thought it was the changing weather,” she said. “For two months, June and July of last year, I was having 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 and all they said was, ‘You need to see an ENT.’

“But given my family history, someone probably should have done an MRI. Then the aneurysm probably could have been found before it burst. That’s what I’m trying to say, to let people know, because I know there are people who have had aneurysms, and their family members may not know if it’s hereditary or not.”

On the morning of August 1, Robarge was getting ready for her job as HR director at Siffrin, where she has worked for 14 years.

“I woke up and started going to the bathroom and I had this huge headache,” she recalled. “They call it ‘thunderbolts.’ I don’t even know what that was, but I could barely walk. I was nauseous; a little bit sore; it hurt to move. I just thought, ‘Oh my God, this is the worst headache.'”

Robarge said she tried to lie on the bathroom floor because it was cold there.

“But I couldn’t even lay on the floor without almost feeling sick,” she recalled. “So I got back up and started to go back to the bedroom, because I thought, ‘I’m just going to go back to bed, and sleep it off.’ On the way back to my bedroom — and I know a lot of people don’t believe this — but my dad passed away when I was 18, okay? On the 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 at that moment 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 to sit in the waiting room because they didn’t have a bed available. I asked, ‘How long have I been in the waiting room?’ He said an hour and a half. I remember hearing the doctor say, ‘We need to do a CAT scan, she might have an aneurysm.’ And I wanted to scream, ‘Yes,’ but after that I don’t remember anything.”

Robarge said she and her husband were sent to Cleveland Clinic Akron General.

“We don’t have anyone here in Stark County that can treat aneurysms, as far as I know,” she said. “So they sent me to Akron. They told my husband, ‘You’re going to take her to Akron General, and if they don’t have anyone there to do it, you’re going to have to take her to Cleveland.'”

Robarge’s aneurysm was ‘rolled up’ using a microcatheter

Dr. Firas Al-Ali, a neurointerventional surgeon at Summit Neurodovascular Specialists, “coiled” Robarge’s aneurysm using a microcatheter.

In 2003, Al-Ali performed the first live online aneurysm coiling.

“It went in through my groin… they inject it right into the aneurysm and it curls around the clot and (isolates) it so the blood can’t get through,” Robarge said.

The coil, she added, is still in her brain.

According to Al-Ali, who has performed more than 1,000 such operations since 2000, the vast majority of brain aneurysms are not hereditary.

Large clots are removed as quickly as possible once a patient arrives at the hospital, he said.

Al-Ali advises pre-screening under certain circumstances.

“Only if there is a history of more than one person in the family; otherwise it is not necessary,” he said.

But he added that there is nothing anyone can do to prevent an aneurysm.

After 26 days in intensive care, Robarge spent a week at Aultman Woodlawn Rehabilitation in Jackson Township as a precaution and to regain her balance.

Twenty-five percent of people with a ruptured aneurysm die within 24 hours

Robarge knows she was lucky. According to statistics, she found:

“I don’t have paralysis. They wanted me to wait to go back to work full time, and I said I would, but I lied,” she said, laughing. “I think one week I was working part time, and the next week I was working up to 40 hours.”

Pleading 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 funding for brain aneurysm research. Pennsylvania tops 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 supposed to meet with State Rep. Jim Thomas (R-Jackson Township),” Robarge said. “Rep. Thomas wasn’t there, so I spoke with his senior advisor and gave them that information.”

Thomas confirmed that Robarge met with his senior advisor at a meeting led by Lauren Holly, executive director of the Brain Injury Association of Ohio.

“I spoke with Lauren Holly,” Thomas said. “She told me that Ohio’s funding in this area is significantly lower than Indiana and Pennsylvania; and (that) her organization receives funding through Ohio’s operating budget (in a line item) through Opportunities for Ohioans with Disabilities. I appreciate Ms. Robarge and Ms. Holly highlighting this issue for me. I will continue to learn more and be a voice for additional preventive funding in this area.”

Robarge said her older brother and sister have had MRI scans since her aneurysm, but the results were negative.

“I also did genetic testing through the Cleveland Clinic to see if I was carrying chromosomes,” she said. “The doctor said that since I wasn’t carrying any, it’s highly unlikely that my sister or brother was.”

Robarge said she has discovered a number of factors that can increase risk and recovery, including smoking, high blood pressure and the use of birth control pills.

“My mother smoked when she had hers,” Robarge said. “She had high blood pressure, so she was on medication for that. I quit smoking the day I had my aneurysm. I had just started taking my blood pressure medication about three weeks before I had my aneurysm. I thought it was stress at work, or stress with things outside the family, or, you know, sinus headaches. I was also on Vyvanse for (an excessive sleep disorder); it’s kind of like ADHD.”

Robarge recalls a former high school classmate who recently died of an aneurysm.

“He had a wife and two young children,” she said. “And I thought, oh my God, I wonder if anyone told his wife anything about what to look for in his children; maybe it’s hereditary. I think they need to know what to look for, and if your doctors aren’t going to educate you about that, who is going to? So the best way for people to know, maybe if they’re concerned, is to get an MRI if they have symptoms.”

Reach Charita at 330-580-8313 or [email protected]. On Twitter: @cgoshayREP.