The Rarest Kind of Rare Strokes – Brain Stem Stroke
My husband suffered a brain stem stroke on October 16th, 2013. It was a Wednesday, early evening, when he called me and asked that I pick him up because he didn’t feel well. This was completely abnormal. My husband has been a dedicated athlete since he was 11 years old. He’s a champion swimmer and has broken records in Masters’ meets.
Being obsessed with researching, I discovered these details about brain stem strokes, mostly thanks to help from my RN friend Ede initially.
Brain stem strokes are among the rarest kinds of strokes
They are difficult to diagnose because they do not present symptoms like most strokes
They are often fatal
Those who survive often end up on ventilators
My husband’s first indication that something was wrong was the thunderclap headache. Other symptoms developed later:
He had nystagmus. His eyes shimmied from side to side.
He lost his voice – NOT his speech, his voice. This is a critical detail because it indicates certain kinds of brain impairment. The speech therapist who initially evaluated him asked him to name as many animals as he could in 60 seconds. My husband, who is a bilingual 2nd grade teacher, coughed up 18 in two languages.
He couldn’t feel the right side of his face.
He had generalized weakness, and lack of balance and coordination.
Worst of all, he couldn’t swallow.
Because the symptoms were atypical of strokes in general in that the side the stroke occurred on is where symptoms were presenting, they ran an extraordinary battery of tests and exams to determine what exactly had happened, including an electrocardiogram, a spinal tap, CT and MRI, and more.
The blood pressure machine they had him hooked to went off repeatedly because of “low pulse”. I kept having to explain that low pulse and blood pressure were normal for him.
“That’s normal. His bp is always 90/60.”
“Forty-eight beats per minute is normal for him. And when he’s excited, hang on! It goes to 55!”
“He’s a lifelong athlete. His bp is always that low.”
“He’s a lifelong swimmer. His heart rate is always like that.”
“HE’S A CHAMPION SWIMMER FOR CRYING OUT LOUD! THAT’S NORRRRRMALLLLLL!” That was only after having explained it multiple times to multiple people, because my husband is humble and doesn’t like me bragging.
When he experienced the thunderclap headache, he was kneeling on one knee, in a very awkward position, trying to dig the filler out of from between sections of concrete around a pool. He was convinced that he’d pinched a nerve, and could even point to the place where the stroke had occurred.
If you’re searching for answers, these details are vital.
My husband’s electrocardiogram came back squeaky clean. His blood pressure, heart rate and breathing were enviable. His weight
was just slightly over ideal – I’m talking 5-10 lbs over. Only his cholesterol came out a little high – 200. This is what they zeroed in on, calling it an ischemic stroke (true), the cause of which was most likely blockage due to high cholesterol, in spite of the fact that he told them several times he must have pinched a nerve or something.
(Later, they said it was probably due to sleep apnea, which he also has. Matter of fact, it worsened significantly after the stroke. So, he uses a BiPAP now.)
Yet, the pinched nerve theory never completely left our minds.
Today, while researching for something else, I found this:
There are also rare causes, like injury to an artery due to sudden head or neck movements.
This came from an article I found on the American Heart Association/American Stroke Association website, whose knowledge, authority in the medical field, and authenticity no one can deny.
If you are searching for answers, whether in regard to a brain stem stroke or something else, and your gut keeps telling you there’s more to it than they’ve been able to tell you, keep looking and watching. Sooner or later, you’ll find your answer. Please, do not blame doctors or other medical personnel. The people who attended us at the hospital were all wonderful and loving, and we are very grateful for the high level of attention we were given! But, they’re still people, and even though their hearts are to help and love and serve, they can make mistakes, too. Or they may simply be overwhelmed with far too much to do as they strive to help keep us healthy.
May this help someone out there, even if it’s just one person. By the way, my husband was back at work in less than seven weeks. If you want that story, contact me.