NH woman founds aneurysm support group

June 03, 2009 05:04 AM

By Ray Duckler
The Concord Monitor

CONCORD, N.H. — Cara Russell needed help, a cushion to absorb the emotional blows. But where to turn? Russell asked herself. Support groups existed for everything, it seemed, but how about for people with brain aneurysms? How about a sympathetic ear, a flow of information, a common bond, a person to identify with?

“You’re stuck in these four walls; you get sick and tired of it,” said Russell, who lives in Penacook with her mother and one of her two daughters. “There’s something wrong. You see breast cancer awareness, you see Parkinson’s disease, you see all kinds of things. You see advertisements on TV. You see all these things and you hear about them, but you don’t hear anything about brain aneurysms, and I’m thinking, ‘How can this be?’ ”

Doctors found Russell’s first aneurysm two years ago, after she collapsed in her living room while caring for her granddaughter. She was diagnosed with another one last July, and she knew then that she needed an outlet.

She’s a 40-year-old certified medical assistant. She’s helped to build the Brain Aneurysm Support Network of New Hampshire with assistance from the Brain Aneurysm Foundation.

The group debuts at noon June 27 at Concord Hospital. It’s the first support system for this type of affliction in our state, and Russell hopes there will be enough interest to support regular meetings. “At least once a month. We’re hoping maybe twice a month,” she said.

The facts are scary. About 6 million Americans, or one in 50, have a brain aneurysm, a weak bulging spot on the wall of a brain artery, according to the brain foundation. Some people never know they have one. About 30,000 aneurysms rupture each year, and 40 percent of those result in death.

Russell’s first aneurysm didn’t rupture, but she can’t remember things like she used to. And now, with recurring headaches, she’s wondering about her second aneurysm. She’s been told it’s too small for surgery, too risky at this point.

“All you do is wait,” Russell said. “Is it getting bigger? Why are my headaches getting worse? Why is my memory getting worse? Is it going to rupture?”

In the genes
Her two aneurysms are part of a sad family history.

Her ex-husband committed suicide eight years ago. Her stepbrother has cerebral palsy and is blind, the victim of shaken baby syndrome, committed by the baby sitter when the child was 6 weeks old. Her oldest daughter, Audrey, 22, has chronic obstructive pulmonary disease. Her youngest daughter, Katy, 21, who still lives with Russell, has a benign pituitary brain tumor and abdominal issues.

And her cousin Billy Dillon, whom she played with as a child, served 27 years in a Florida prison for a murder he didn’t commit. Dillon was recently exonerated through DNA testing.

Russell? She had been suffering from nasty headaches for a few years, never realizing what the problem was. She sat in her living room recliner June 16 two years ago, holding her little granddaughter Rylee. She called it a relaxing day, warm and quiet. It didn’t last, though.

“I had a headache at that time, but this was like an electrical feeling,” Russell said. “Next thing I know, I was going in an ambulance and woke up in the hospital.”

Four days of MRIs, lab tests and CAT scans revealed the aneurysm. Russell had surgery four days later. During her surgical procedure, called clipping, a section of her skull was removed and a titanium clip was inserted near the base of the aneurysm, preventing the flow of blood to the area. The bone plate was then secured back into place.

Russell came home after three weeks. “I have no memories for almost three months,” she said. “I woke up and it was theof September, foliage.”

The headaches continued, and Russell was diagnosed with another brain aneurysm last July. Next month, doctors will determine if it’s big enough for a second operation.

In a strange twist, Russell hopes it has grown. She wants the surgery, the shaved head, the cut skull, despite the danger involved. She wants to move forward with her life.

“I’m not going to let them wait,” Russell said.

Russell forgets things now. Where are her keys? Where did she put that medical form?

Before going on disability, she was a certified medical assistant. She also worked as a nurse, a cosmetologist and an executive secretary. Her attention to detail was sharp, her memory strong.

“I am meticulous about everything,” she said. “I never forgot names, never forgot dates, could tell you what you wore on that day when I talked to you, could tell you what you said, the earrings you were wearing, the expressions you made. It drove my kids crazy.”

Now she wants something simple in a world of confusion and worry. She wants people to talk to. People who know what she’s been through, what she’s still going through. People who understand.

Building from scratch
Russell has been working with the Massachusetts-based Brain Aneurysm Foundation to create the support group. The foundation is the country’s lone nonprofit organization geared toward aneurysm awareness, providing education, research and support.

It sent Russell booklets, brochures and DVDs, explaining how to add another chapter to the more than 30 support groups that already exist across the country.

“For Cara, she might meet someone who has survived five years,” said Christine Buckley, executive director of the brain foundation. “She might hear someone say, ‘When I was at that point, I had that issue, and look at me now. I’ve moved on to do this.’ It’s continuing growth and sharing, and people can see someone else progressing andup helping someone else who’s newly survived.”

Russell called hospitals and brain injury support groups to learn how to get started. She spread the word to online brain injury message boards, telling her story and explaining what she wanted to accomplish. She sent letters to neurologists and neurosurgeons, inviting them to serve as guest speakers.

Concord Hospital is an ideal setting, complete with professionals who can answer medical questions. The group will be able to receive basic information, exchange phone numbers, and share personal stories of triumph and tragedy.

Russell estimates that 20 people — survivors, caregivers, family members who’ve lost someone — will attend, from New Hampshire, Massachusetts, Maine and Vermont. She calls it a network of support.

“It’s education, it’s psychological, it’s knowing you’re not alone,” Russell said. “It’s raising the awareness level as to what the up-to-date options are.”

Russell would like to write a book, relaying the experiences of others like herself and those who weren’t as lucky.

“Talk to the survivors and the families of the ones who haven’t survived,” Russell said. “My therapist told me I have to find something to do with my life before it consumes you. I’m disabled, I can’t work, but there are other things that can be just as gratifying.”

Meanwhile, Russell waits for her doctor’s appointment next month. She has daily headaches and dizziness. She vomits a lot. She knows she’ll need surgery before it’s too late. Again.

But she also knows there’s a meeting to attend June 27. And, if all goes as planned, others will follow after that.

“It’s long overdue,” Russell said. “They can find comfort, and they can find a place where they can memorialize their daughter, their son, their husband, their wife. It gives all of them a place to go.”

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