(Online companion piece for the article Uncommon Survivors, in the Spring 2014 issue of Stroke Connection magazine, available in e-Zine or PDF format.)
Over the years, we have published many stories about survivors who have had strokes caused by dissections, AVMs and cavernous angiomas. Here are updates to a few of those stories. For even more stories, visit our digital edition of the Spring 2014 issue.
In 2006 we wrote about Kasey Koller of Panama City, Florida. She had an inch-long tear in her carotid artery at age 11, on her last day of fifth grade. In the hospital, she went into a coma. When she awoke two days later, she couldn’t move her right side. The stroke had injured areas that controlled comprehension and dexterity, but age was on her side. She spent her summer in rehab and returned that fall for 6th grade. Everything had come back except she had weakness in her right arm that was a little embarrassing. We followed up with Kasey in 2011 for another story. Far from the reserved middle school stroke survivor we had first met, she was an outgoing college student working on a degree in elementary education. This past December we checked in with her again: in the fall she’ll be working to become an occupational therapist in a program at Troy University. She especially wants to work with children. “She feels that since she has been through so much rehab and therapy over the past 10 years, that she can connect with others that need help during therapy,” her father Dale told us. Full stories in January/February 2006 and January/February 2012.
Penny Santoro, age 56, of Doylestown, Pa. had a stroke as the result of a carotid dissection in August 2009. The tear was so large that it required four stents to repair, a first for her doctor. Her adult children – an Iraq war veteran with a brain injury and a daughter who teaches special education – were instrumental in her recovery. Although she is legally blind in her right eye as a result of the stroke, she wears glasses and recently regained her driver’s license. She is very involved with her stroke support group, where she often facilitates meetings – “That makes me feel so good about myself, especially since I am in the middle of a divorce as a result of the stroke,” she said. Through her support group she participated in a 12-week study of a foot stimulator that benefited her gait and balance. She has also been doing therapy with a psychiatrist – “That has been so affirming,” she said. Penny volunteers as a peer visitor at the hospital where she had her surgery. “I love being able to tell new survivors that they will get through this,” she said. “My stroke group is full of amazing survivors. They give me the courage to keep going. It really helps to be with people who have been through what you’ve been through. I’m doing what I can to move my life forward and achieve my goals.” Full story in Winter 2013
Larisa Diephuis of New Orleans survived a stroke in November 2009, then 4½ months later had brain surgery to remove the AVM that caused it. She was 39 and the mother of 4-year-old Ian. “After both the stroke and surgery, my balance was way off, and I constantly felt seasick and could not walk or read,” she recalled. “I told Ian that I had a boo-boo in my head and needed to rest to get better and could not play with him like I used to.” Because she didn’t have the energy and had to rest more, she wondered if she “could do it all again.” When we checked back in with her last year for a story about returning to work she had answered that question definitively – she couldn’t do it all. “I wanted to go back to work exactly how I was before, which meant 50-hour weeks, managing a full-time staff of six and 30 part-time staffers,” she said. “But I just wasn’t the same. My information processing and attention were both affected.” She could no longer participate in long meetings, and multi-tasking, the hallmark of her pre-stroke working style, was no longer possible. Fortunately, her employer recognized her value and created a job for her doing initial interviews of potential new hires. Now she works 30 hours a week from home. And last year she remarried. Full stories in September/October 2010 and Spring 2013
Lori Vober was 29 years old and living in Minnesota when she had a hemorrhagic stroke while at work. A CT scan revealed an AVM, and she underwent five hours of emergency brain surgery to stop the massive bleeding it caused. She spent the next 17 days on life-support in a drug-induced coma while doctors struggled to get her blood and brain pressure under control. A month after her stroke she had a 10-hour brain surgery to remove the AVM. After she was released from the hospital, Lori and her husband Dainis moved in with her parents. Soon after, Dainis lost his job in the airline industry and a new position required a move to Phoenix. Her parents moved with them, and the two families eventually moved in together. Then Lori started having seizures, eventually progressing from 30-second stares to eight-minute convulsions. It took two years of trying different medications before the seizures were brought under control. “Between the challenges of my disability and the epilepsy, we had no life,” Lori said at the time. “I couldn’t assist with any daily chores, and social functions were out of the question.” Months of therapy allowed her to get some of her life back. When we contacted her for an update, she had big news: “A lot has changed since 2008. I have continued to work on therapy and have made small improvements. Although I still have a disability, my recovery has allowed me to move forward in several areas. The biggest one is I am now a mom. Two and a half years ago Dainis and I adopted three children from Colombia.” Full story in September/October 2008