No two strokes are alike: My story


CNN) — The first time I had a stroke, I was 22, too young and naive to know what was happening.

The second time I had one, about two months ago, I didn’t recognize the symptoms and resisted my husband when he suggested that we go straight to the emergency room.

In the United States, someone has a stroke about every 40 seconds. And about a quarter of those people have had a stroke before.

Having a stroke increases the risk of another, and recurrent strokes have a higher death and disability rate because parts of the brain injured by the first stroke may not be as resilient, according to the National Stroke Association.

On January 3, just after I’d finished dinner at home with my family, my second stroke hit. I thought I knew a lot about stroke, but I had no idea that my sudden loss of vision meant I was going down that road .

“One of the tricky things about stroke is that no two strokes are alike,” said Jim Baranski, chief executive officer of the National Stroke Association. “Each one is uniquely different. Therefore, the signs and symptoms can be different. One of the things that all of them have in common is the suddenness.”

One minute I was standing up, and the next I was buckling, telling my husband, Toby, that I couldn’t see. Yet, I foolishly thought this would pass and told Toby that I just needed to lie down.

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I asked Toby to call my father, who had guided me through a life-threatening hemorrhagic stroke that temporarily paralyzed me more than 20 years earlier. Only about 15% of strokes are hemorrhagic strokes.

Of course, my dad agreed that I needed to go to the ER. My husband drove me and our terrified 10-year-old daughter to the closest hospital, St. Jude Medical Center in Fullerton, California, which happens to be a designated stroke receiving center.

I’m embarrassed to admit that none of us thought about calling 911. And that was a mistake.

“We’ve spoken to many stroke survivors who had some of the classic signs and symptoms of stroke but didn’t recognize that they were symptoms and unfortunately didn’t get to the hospital in time to receive proper stroke treatment,” Baranski said.

Classic signs and symptoms include facial drooping, arm weakness and impaired speech.

“This is a 911 matter. It’s not something where you can take an aspirin, lie down and hope it goes away,” according to Baranski.

Within minutes of arriving at the hospital, I was on a bed with nurses bustling around me, starting IVs and covering me with a warm blanket. I heard someone mention stroke.

Given my history, doctors didn’t know whether this stroke was connected to the first one, a bleed caused by an arteriovenous malformation, an abnormal tangle of arteries and blood vessels in my brain. I’m 44 now, but I was born with that malformation, and that tangle is still there.

But it soon became clear that this was an ischemic stroke, a stroke caused by a blood clot. Most people who have strokes have strokes caused by clots.

Because I’d already had a hemorrhagic stroke, it was too risky to give me tPA, the clot-busting protein that, if given within three hours of stroke symptoms, can help limit damage. That’s why you’ll hear that time is crucial when it comes to stroke. You’ll also hear that when it comes to stroke, you need to act FAST.

And because of that pesky first stroke, my doctors decided against prescribing blood thinners, a standard treatment for strokes caused by clots. Just recently, however, my neurologist said it would be OK for me to take a baby aspirin every day.

“Aspirin or any blood thinner is not going to cause the AVM to rupture,” said one of my doctors, Dr. Amit Balgude, co-medical director of neurointerventional radiology at St. Jude Medical Center.

But, he added, if I did have another bleed, it would be much harder to control if I were taking those medications. “You are very unusual in that you have an AVM and then you suffered an ischemic stroke.”

So unusual, in fact, that my neurosurgeon is recommending second, third and possibility fourth opinions before we decide whether to pursue Gamma Knife radiosurgery on the arteriovenous malformation or do nothing, both of which have risks.

I may be unusual, but I’m also lucky. The second stroke affected only my vision. Within two days, I had it back. I’m still plagued by extreme fatigue, but I’m in no position to complain.

I still don’t know why this happened, and I suspect that I never will. I don’t have any obvious risk factors. But after undergoing an unpleasant test in which a scope was guided down my throat and into my esophagus to check out my heart, doctors found a tiny hole in my heart, a patent foramen ovale.

It’s not certain that the hole caused my stroke, but the condition is associated with an increased risk of stroke, Balgude said.

In some ways, my second stroke has been liberating. I’ve carried the fear of it with me for 22 years. I can let that go now. It’s happened, and it wasn’t nearly as bad as my first. I just don’t want a third.

What happens during a stroke

Baranski thinks it’s important that people speak out about stroke.

“There’s a stigma attached to strokes that prevents people from talking about it,” he said. “What I would say to survivors, what I want them to know, is to never give up hope. Just because you have a disability resulting from the stroke doesn’t mean it is necessarily permanent.”

Also, “I think stroke prevention starts with your primary care physician,” Balgude said. “Risk factors include high blood pressure, high cholesterol, diabetes, smoking and physical inactivity. Those are some of the risk factors you can control.”

Not long after I was released from the hospital, I ordered a bracelet with two simple words on it: Be brave. When my daughter asked about it, I told her that the bracelet was a reminder to have courage. I explained that the dark red cord was chosen to represent stroke awareness.

She later told me she’d asked a friend to make her a red bracelet for stroke awareness. She never takes it off, even when she showers.

Gestures like that remind me just how fortunate I am.

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