Leslie died when she was only 61. She was a beautiful, kind, loving, and giving person. She and I were married for almost 40 years, blessed with 2 sons and 3 grandchildren whom she loved with unbelievable intensity. She was the consummate mother and grandmother with the capacity to give and then give more, asking for nothing in return.

Fortunate to retire early, we moved to the west coast of Florida. She loved her new home and lifestyle. In our working years we moved frequently, and I often would caution “don’t do this or that because who knows how long we will be here.” I was so happy for her that she could finally make a home that would likely be forever. She lived in this home for less than 2 months and never had the chance to make it her own.

Leslie had her first seizure when she was 18. In those days the diagnostic tools were not yet available to identify the cause of the seizure. It was attributed to being “one of those things.”

When she was about 42 she had another seizure. The recent advent of CAT scans finally enabled the diagnosis of an AVM. Fortunately, neither of her prior seizures caused a bleed. Regardless, those of us who knew her were aware that there were noticeable changes in her memory and organizational skills, among other symptoms. The AVM had taken its first noticeable bite.

We sought the best known neurological centers in America to review Leslie’s CAT scans; all the experts agreed that the risks inherent to the available surgical options were not warranted due to the size of her AVM. The statistics indicated that the longer one lives with an AVM the less likelihood of further trouble. At 61 years we thought her odds were good.  Despite taking anti-seizure medication 4 times a day at the direction of her neurologist, she led an active life. We believed that she would die with the AVM not from it, so said the statistics. Leslie's AVM hemorrhaged on December 4, 2004. She died 3 days later.

AVMs are one of the silent killers. I believe that certain fatal aneurysms and other intracranial hemorrhages are in actuality AVMs. It seems that there must be a greater incidence of AVM in the population than reflected by the statistics. Certainly there are surgical techniques for reducing AVMs, but the risks of the currently available surgical options are too high for cases like Leslie’s. AVM is complex, poorly understood, and not readily diagnosed, deserving of more research funding for the betterment of the general public. It is too late for Leslie and untold others, but together we can help ensure long life for the AVM afflicted at risk today.

Help us kill the AVM monster before it gets too many more of us!

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