I've been involved with brain aneurysm online support groups since the pre-web early 90's and ran a site on a local Free-Net around that time.
Mine is a long and complicated story and I will break it up into smaller digestible sections. This is Pt. 1. Photos are me with my post op scar in 1989 and the clip.
Up to date technology is important. I went looking for an aneurysm in my head in 1988 when I was almost 37. I convinced my regular doctor to send me to a neurologist to get checked out even though I was not having any symptoms or any problems. I just needed to find out for sure because I always knew that I probably had that ticking time bomb in my head. I had even told my future wife back in the mid-70s’ that I did not expect to live much past 50.
My father, one of his brothers and their father all died young from ruptured brain aneurysms. My father's aneurysm ruptured in 1970 when he was 47. I was 18 and our youngest brother was 8. I had only been in the Navy for six months when some fellow sailors told me the chaplain was looking for me which is never a good sign. When I went to his office he told me my father was sick and I should call home. I did and found out he had just died within that hour. I flew home on a two-week emergency leave for his funeral wearing a black armband on my summer whites uniform.
So then 18 years later in 1988 I went and had my first of 23 brain scans. It was a CATscan and they found nothing. I was also fortunate that my health insurance covered the scan. I was very excited and talked with my brothers about them getting scanned too. Back then we thought it was only a male thing getting aneurysms in our family. My youngest brother’s wife worked in the neurology department of Jefferson Hospital in Philadelphia and they recommended him getting an angiogram scan which subsequently did reveal a brain aneurysm. They said it probably would not have shown up on a CATscan. He had surgery to clip his aneurysm but he had an unforeseen reaction to the anesthesia drug in the form of malignant hyperthermia which caused a stroke. Fortunately, he recovered but it took a long time.
While that was happening in Philly I went back to my neurologist in Buffalo with that info and then had an angiogram scan. They found two aneurysms in my brain. One was considered at the time to be inoperable because of the location behind my eye. They recommended surgery to clip the other one but we put it off for a few months because my wife was eight months pregnant at the time and we had a toddler running around.
My surgery went well although I also had a reaction to the anesthesia but they were now ready for that possibility and I woke up from surgery packed in ice to control the malignant hyperthermia. I was home in a couple of days but spent many months recovering on the couch with our new son lying on my chest and our little girl staring at my stitches and scar. We never dreamed that she would one day go through the same surgery. It also turned out that my clipped aneurysm was ready to pop and I was fortunate we didn’t wait any longer.
Next post I’ll describe how my life changed after surgery… for the better.
Part 3 of my new member post about a family experiences of brain aneurysms.
Moving On. During those months of being home recovering I worried about the functioning of my brain especially after seeing the long recovery of my brother from his aneurysm surgery related stroke. Prior to my surgery I had been working at my in-laws’ art supply store that was located near the SUNY Buffalo art school at the time. I had helped computerize the business throughout the 80’s and was very interested in personal computers but I wanted to do something different now.
I also wanted to test my brain so I enrolled that fall semester in a computer science course. I had a BA degree from Temple University in Film & Media Studies that I finished in 1978 after my four years in the Navy (1970-73) but then in 1989 I really wanted to work with computers but I also felt I needed to be in a work environment that was not stressful because I still had another aneurysm in my head that I had to live with and monitor. I liked the idea of working with computers in libraries which was becoming a new thing. Quiet and not stressful too. I then enrolled in the School of Library Science graduate program at SUNY Buffalo. I went one semester to try it out and loved it. I was good with the computers and the University gave me a Graduate Assistantship to run the computer lab for the MLS program. That meant I was going full time for a two year program and had no tuition plus a stipend. In addition to regular library studies I especially focused on the computer aspects of libraries and it being 1990 there was also that new thing called the Internet that became my specialty.
I graduated in 1992 as a librarian specializing in computer technology and online resources. I was immediately hired at the downtown Central Library of the Buffalo & Erie County Library System as the Computer Support Librarian for Reference Services. I stayed there for five years before moving to Canisius College where I worked as the Library Systems Coordinator. I loved working with students. I stayed at Canisius for 20 years and retired in 2016. During that time I had a brain scan every two years to monitor my untreated aneurysm and the clipped one. Over time as technology improved they discovered two more smaller aneurysms. We had then realized the girls in the family could get aneurysms too including my sisters. I tried to get everyone in the family tested including all the kids starting at age 18. Bu we also lost another non-tested family member to a fatal rupture. More on that later and my own librarian research into online aneurysm resources. Sorry to ramble on so…
Part 4 of my new member post about a family experiences of brain aneurysms. Recovering and A New Career. It took a while but I recovered from the aneurysm clipping surgery and then finished up graduate school with a masters degree in library science specializing in computer technology. I was also getting ready to turn 40, still changing diapers and starting a new career.
I also had to regularly monitor that other aneurysm behind my eye that the doctors said they couldn't operate on. The good news was they said it was non-fatal because if it ruptured the blood would drain away from my brain but into the eye cavity. The bad news was it would probably blind me. Some other good news was that my surgeon used one of the very new, at the time, non-metal clips which meant that after a couple of years of getting angiograms I was then able to get the new MRI scans which was much easier and non-intrusive. Technology was getting better and throughout the 90's I got regular MRIs every two years. Also this was long before coiling, micro-surgery and stents.
During the early 1990's I was worked at the downtown public library and conducted weekly public demonstration and training sessions in the auditorium on using the internet. I used my personal experience to research aneurysm medical information during those early pre-world-wide-web sessions. I also created a gopher site on a community free-net for aneurysm resources that people could go back and look at. I called it Brain Storm. It would eventually evolve into a website that I kept until 2004.
Later in the mid 1990’s I came across Dr. Bill Maples’ new aneurysm support group on the State University of West Georgia’s website. It was called the Aneurysm & AVM Support Page. It was a collection of many personal aneurysm stories posted to the site including my own which I first posted in 1997 and then updated several times over the next ten years as more of my siblings and cousins had surgeries or ruptures. There were many interesting stories to read on that site and was a great example of how the sharing of information on the Internet was developing some 30 years ago.
Maybe next post I'll describe our family participation in that genetic study of brain aneurysms since we had 12 family members with aneurysms.
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