My mother died in 1966 from complications following neurosurgery for an AVM. Actually she came through the original surgery very well, with a 95% or better chance at total recovery; but several days after surgery, she fell, (long story that I won't go into) started bleeding internally, was rushed into emergency surgery and subsequently died on the operating table. They couldn't stop the bleeding.
Until 1995, when a television journalist in St. Louis where I live (Dennis Riggs) had emergency surgery for an AVM; and then his surgery and recovery were on TV, I had never heard of anyone else in the world who had had an AVM. I was 15 when my mother died, and for most of my life I just would explain that she had had "something similar to a brain tumor." There is a lot of truth in that, because the effects of the AVM putting pressure on her brain causing black outs, numbness on the left side of her body, a total personality change (over the 10-15 years or so that they think it was "growing"), etc. are similar to the effects of a brain tumor.
It would have been nice, I suppose, for the surgeon in 1966 to describe it as"tangled blood vessels." That is what the paper in Houston described the AVM as being. What I remember is that the surgeon in '66 said it was like a "clump of worms" about the diameter of a half-dollar. "Clump of worms" -- "tangled blood vessels" -- six of one, half-a-dozen of the other.
Then very recently the Manager of the Houston, Astros had a grand mal seizure due to an AVM, and had surgery (I guess this past Tuesday). And when I heard the news of what had happened to him, I said "hey, I know what an AVM is. That is what my mother had." And after checking out (on the Net) what the Houston paper had to say about his condition, I decided to type in and search for "arteriovenous malformation" to see what might turn up. And I found this site. I guess the news about the Astros' Manager has gotten me thinking about all of this again.
And, I suppose I am writing to connect with a person, or persons, who do know what an AVM is. I ran into Dennis Riggs about 2 years after his surgery. Normally I don't talk to public individuals because I feel self-conscious. But I felt compelled to tell him that knowing that he had had the same thing my mother had had 29 years earlier was healing for me. And in a strange way to thank him for being healing to me. Finally the isolation of this "freak thing" was diminished greatly. (And now that the Manager of a major league baseball team has had an AVM, I know for sure that it is not just something that my "weird" acting mother had. It happens to all sorts of other people too.) The truth is that because of the pressure in her brain, my mother did act "weird" for several years before her surgery.
The real tragedy of it was that her Internist just thought she was a "crazy menopausal woman" (remember this was the late 50's and early 60's) and he just gave her sleeping pills and tranquilizers for years. And it wasn't until 2 months before she died that anyone decided to do a thorough battery of tests on my mother. At which point they discovered the AVM. Alas, she went through a lot of years of dis-ease (not to mention the family) that might not have happened if she had been taken seriously as having a physical as opposed to a mental problem. Sigh.
Anyway, thank you for reading this (for electronically listening to me).
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