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Stroke Story

Perceptions, Personal, Medical

Last Sunday's newspaper contained  a story about a stroke victim who sued and won a $2 million settlement from a hospital in West Bend and its Emergency Department (ED). They misdiagnosed an early minor stroke event, a transient ischemic accident (TIA) that caused temporary stroke symptoms. He was sent home and later suffered a major stroke that left him partially disabled. The ED and its physician were cited for failing to administer or inform the patient of a simple test, an ultrasound, that would have detected a 95% carotid artery blockage that later resulted in the major stroke. The article was informative but contained some erroneous information.

I feel compelled to relate my personal experience with stroke to correct the error in the newspaper article and to provide some important information concerning strokes and their treatment that I believe is inadequately understood. This in the hope that someone may avoid the mistakes made in our case that had tragic results.

My wife, Joan, experienced a stroke in 2009 at home. I detected the symptoms almost immediately--confusion, inability to understand questions and inability to stand. I immediately called 911 and the ambulance was there within 10 minutes. She was transported to a nearby hospital, arriving well within the first hour after symptom onset. At the hospital, she was examined by their stroke "expert" neurologist. Upon my arrival, he informed me that he "didn't think it was a stroke," a diagnosis that surprised me since both I and the EMT's who transported her thought it was. I asked what he thought was wrong and he said "something chemical." Joan was awake and struggling with everything she had against what she knew as an RN was happening to her.

I objected to the doctor's diagnosis as an impossibility since she had taken no medication that morning. He informed me--and this is the error in the newspaper article--that they had taken a CAT scan and "it was clear" except for "evidence of an earlier stroke," which was correct. The impression I got was that there was no evidence of a stroke so I stopped objecting. Joan was admitted and spent two days struggling against the dark monster that was destroying her brain, screaming "NO!, NO! GOD HELP ME!" almost non-stop. I can only imagine the horror that she was experiencing as her personality, her essence, was being inexorably snuffed out as her brain cells died. ( It takes about two days for brain cells deprived of blood supply to die.)

Joan had suffered a blood clot, caused by atrial fibrillation. A-fib is erratic contraction of the upper chambers of the heart, the atriums, that draw in blood and pass it to the lower chambers, the ventricles, that then pump it out. A-fib causes pooling, like eddys in a stream, which can result in the formation of clots. In her case, which is common, the clot passed into the aorta, the main artery carrying blood from the heart to the rest of the body. The first major arteries branching from the aorta are the carotids, one on each side of the neck, that supply blood to the brain. Her clot passed through the left carotid and lodged in the left cranial artery that supplies much of the brain's left hemisphere. The areas affected included speech recognition and generation, a major motor cortex (muscle control) and cognition areas at the front and rear (parietal and occipital) of the brain.

Atrial clot formation is effectively treated by anticoagulants, most commonly warfarin or coumadin. Due to some medical miscommunication, Joan was not taking that drug. This is an important point. If you or a loved one is diagnosed with A-fib, make sure that anticoagulant therapy is instituted promptly. The second medical screw-up, the most damaging, occurred in the hospital ED.

There has been substantial public exhortation to get stroke victims to the hospital as soon as possible. However, there has been little specific explanation as to why. Blood clots form relatively slowly, starting as soft fibrous masses and gradually solidifying in a matter of hours. There is a drug called tPA--tissue plasminogen activator--that, when administered during the clot "soft" phase, will dissolve the clot. After the clot hardens, usually six hours after initiation, tPA is no longer effective. If administered within the first hour, when Joan was in the ED, tPA is 70% effective in achieving significant improvement.. This decreases gradually until at 3 hours it is about 50% effective and at 6 hours about 10%. (These statistics come from a definitive study by the National Institute of Neurological Disease and Stroke [NINDS], a division of the National Institutes of Health.) Unfortunately, thanks to the hospital stroke expert's "I think it's not a stroke" diagnosis, tPA was not administered to Joan. In fact, virtually nothing was done for her, leaving her to fight alone, a fight doomed to failure. Those two days while she screamed and her brain cells died were the worst two days of my life.

So, here is the bottom line, the things you need to know should a loved one experience stroke symptoms. These are: weakness, facial drooping, confusion, lack of motor control--e.g. inability to grasp or stand, unresponsiveness. Should any or several of these symptoms occur suddenly, do not hesitate. Call 911 and get the patient to the hospital.

At the hospital, the ED will typically order an immediate CAT scan. The purpose of this procedure is NOT to determine if a stroke is occuring, but rather to identify the type of stroke--thrombic (blood clot) or ischemic (hemorrhage). The X-ray cannot see brain cells dying due to blood starvation. (Only a PET scan can see this, but is rarely covered by insurance.) It can see blood escaping from a hemorrhaging blood vessel. In the case of bleeding, tPA should not be administered because it will exacerbate the bleeding. However, if the bleeding can be arrested, substantial recovery is likely as flooding with blood does not kill brain cells, it merely shocks them into non-functioning which usually diminishes with time. About 2/3rds of strokes are caused by blood clots choking off blood supply to part of the brain. Brain cells deprived of blood supply eventually die--permanently.

If the CAT scan "sees" no blood, you must insist on the immediate administration of tPA! Some few doctors hesistate to administer this valuable medication because there is a 5% statistical possibility it may cause bleeding. Medically, this is a very small risk, but because of the vagaries of malpractice suits, some physicians prefer to avoid it. It also is expensive, about $3,000, usually covered by insurance, and requires some expertise to administer properly. But it will most likely greatly minimize subsequent. stroke disability. Insist on its administration; it is your right as a spouse or relative.

I will never forgive myself for allowing myself to be misled, I believe deliberately. My dear wife and I will live with this the rest of our lives. Joan is almost completely disabled, unable to communicate or do most anything for herself. She must be fed and is incontinent. She spends her days in a hospital bed or a special wheelchair (Broda). She is being cared for at home. It is the least I can do.

Disclaimer: I am not a medical professional, as my profile attests. The recommendations and descriptions in this post are based on my personal experience and fairly extensive research into tPA. I should note that there are guidelines relative to the administration of tPA beyond the results of the CAT scan. I did not list them because they are not common, except perhaps for the limit of sentient blood pressure not in excess of 185 mmHg. I believe the reason for this limit is that chronic hypertension can weaken the walls of blood vessels making leakage more likely, which could be aggravated by tPA. In my and Joan's case, she had a blood pressure in the ED of 187 mmHg, but this was not sentient BPas she was extremely agitated and struggling. Anyone's blood pressure elevates under stress.

The purpose of insisting on administration of tPA is to force the physician to justify not administering it, should that be his or her decision. In no way am I suggesting that a doctor's recommendations be ignored, just that they be in the best interests of the patient. 

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