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Jodi C.
Jodi C.
Survivor

Tracey E.
Tracey E.
Survivor

Elizabeth H.
Elizabeth H.
Survivor

Shannon A.
Shannon A.
Family

Bob B.
Bob B.
Survivor

James F.


Survivor

Did not fit the stroke mold

It took months for doctors to even call it a stroke. A quick turn of my head sent me into a world of pain and medical uncertainty.

At age 35, I had been told I was being laid off from my job as a technical analyst for a large pharmaceutical company. I was being given 9 months to finish a project, and presumably look for something else. One thing that wouldn't be changing would be my fencing—I had been an instructor for years, and competed at a top level. I even ran competitions for my club. I ran one such event, in which I also competed. On this day, I took 10th of 45 competitors—not too shabby—then finished running the competition, closed up the place, and went home. I got home and laid down on the floor as my little 9-pound dog tried to kiss me in the face. I jerked my head to the right to avoid the little guy, and my head immediately exploded in pain.

It took all the strength I had to push the dog off my chest and roll over. I laid on the floor for five minutes, grabbing my head before I decided to go upstairs to get some Tylenol. I made it halfway down the stairs when the vertigo and loss of equilibrium proved too much. My wife found me on the steps, then took me to the hospital. She had to put me in a wheelchair and wheel me into the ER, where they immediately admitted me—a sure sign something was VERY wrong. I had been there a few other times, and it always took a minimum of 2 hours to get looked at, no matter how bad I or whoever I was with seemed to be. A team of doctors and aides started poking and prodding—16-20 vials of blood, a CT scan, 4 spinal taps—other stuff I can't remember. I DO remember the doctors, thinking I was asleep, discussing the possible diagnosis. One said, "It's not stroke, it's not lupus." I muttered, "It's never lupus." —a House, M.D. joke—but don't think they heard. I did not show the classic symptoms—I had not lost use of either side of my body. I didn't fit into any risk group—low blood pressure, low cholesterol, non-smoker, non-drinker, always active and never overweight—no major illness or family history of. After a few hours, the vertigo I experienced (my right eyeball was set into perpetual motion for six months) took over, and I had to throw up. My body forgot how—it took a half hour to do. They finally put me in a bed, exhausted, but woke me up every hour to check my vitals. The next day, it was obvious I could not walk. The pain had lessened, but they still didn't know what was wrong. They would suggest putting me in a rehab center.

The day I left, I got hiccups, and for two weeks, they never went away for more than 20 minutes. I had dropped significant weight already because I could not swallow. The smoothies my family brought were all I could eat, and I would choke on even those pretty easily. In the Kessler rehab center—which I have nothing but praise for—I discovered that my left side could no longer detect temperature. When I tried to grab a cold soda with my left hand, and it seemed to be room temperature—switching it to my right hand proved my left hand wrong. A welcome shower a day later confirmed this. Also if I feel any temperature too hot or too cold with my left side, it will divert a shard, stabbing pain elsewhere, usually to the right side of my face.

After 10 days in Kessler, my insurance company decided I was better, and had me pulled out of a physical therapy session. They initially refused to pay for the previous two days, a Sunday and Monday, but my doctors pushed back. They wanted me there for another 2 weeks, but they lost that battle. My wife & mother were called at work to come get me, buy all the equipment, and set me up at home. Two months later, two teams of doctors and four sets of MRI's concluded I had, in fact, had a stroke when the artery feeding my brain stem was dissected. They have no idea why that happened, or why. The doctor who finally made the diagnosis requested a final set of MRAs, then retired before he could examine them—so we trust his colleagues that every thing looks ok now.

Three years later, I still suffer through lots of head pain, the temperature sensation never came back, and my left side feels like it's on fire without medication. But I can walk, teach fencing, and essentially do what I used to be able to do, to an extent. I suffered through long periods of unemployment, and am temping now, at less than half of what I had been making. We get by on what little health insurance my wife's job offers. Every day brings uncertainty, but we push on. I deal with pain constantly, hoping a spontaneous remission will occur, or a magic bullet will be developed. But I can wrestle with my nephews, run with my dog and fence with my students, so I am grateful for that.

 

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Display of the Faces of Stroke stories does not imply National Stroke Association's endorsement of any product, treatment, service or entity. National Stroke Association strongly recommends that people ask a healthcare professional about diagnosis and treatment questions before using any product, treatment or service. The views expressed through the stories reflect those of the authors and do not reflect the opinion of National Stroke Association.

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