Hi DickD,
I’m a fellow pre-attack AVM survivor. Since there were changes to this website all my profile info was lost. I won’t bore you with most of it now though. If you like I will another time.
My AVM was asymptomatic and discovered after a head-on collision. Going from 50 mph to 0 in a nano second, my face was smashed into the steering wheel and completely torn open from my right eye to the top of my head. Big mess! Head & brain trauma resulted. It was no fun at all. Once I was up and around I had a battery of tests. An MRI was performed. If you’re claustrophobic, you won’t like MRI’s. I’m not. But if you are you’re given a mild sedative to get you through.
The first doctors who reviewed the MRI images said all is fine and dandy. I wanted a second opinion for no other reason than piece of mind. I got one at Barrows Neurological Institute here in Phoenix, Arizona in the southwestern part of the U.S. They called me the next morning. The trajectory of my life was forever changed, just as yours and everyone else’s here, was.
An angiogram was ordered. Not knowing what the hell that is I went about it casually. I don’t know about now, but back then angiograms were excruciatingly painful. It confirmed the AVM in my posterior medial right parietal lobe. At the time I had been competing in Triathlons for five years and just qualified for the Ironman in Hawaii. My doctor, a cyclist, said I was lucky to have found it. It could have hemorrhaged during the open water swims and I would have sank. Or, worse, when driving and possibly injuring or killing others. It seemed there was much more bad news than good. Turns out I was wrong.
And in my ignorance and naïveté regarding matters of brain AVM’s, I’m honestly thinking, and said to my doctor, “it must be some pricey medicine to get rid of this thing, right?” Surgery never entered my mind. He responded, laughing a bit, “no, we have to go in and remove it.”
This was Fall of 1992. I was in my early 30s. Not much scares me. The prospect of brain surgery did, like I’ve never been scared before nor since. My surgeon put things in perspective though. He said, “this thing will hemorrhage one day. And if happens in your 70’s-80’s-90’s, you will wish you had surgery when you were young.” He continued and said “the long-term risks of doing nothing are far-and-away greater than the short term risks of surgery now.” I was much younger, in top physical condition, and overall in very good health. So it made perfect sense.
I had the surgery June of 1993. It sucked! And yours will too. Though the doctors said I should expect to be in the hospital a week or two, then rehab after for maybe a few weeks, that didn’t happen for me. I went under the knife early on a Thursday morning, woke up Saturday with what felt like the the combination of the worst hangover, headache, body aches, soreness, swelling, dizziness, vertigo X 1,000. But I went home Sunday! Only four days in the hospital. I was extraordinarily fortunate.
At the time my mother worked at this hospital in the records department and as a translator, for years after. She told me my “chart” was used often for the neurosurgical residents as a learning tool. Someone with my type of AVM at my age and in my physical condition, can heal quickly and get back to my former life.
Sadly my racing days ended primarily due to the neck injury from the initial accident. And it took nearly two years to fully recover from the surgery. But I have no permanent deficits other than a very slight “weakness” on my left side. By weakness I mean I got back roughly 97% of all my faculties on my left side. To better describe it, I write left-handed and I’m a drummer, and can only feel the 3% deficit when I write or play. Other than those, all is well.
Also, because I’m an active outdoors type, being much less active than before the accident and surgery was torture. But you learn to make adjustments. I went from Triathlons to mountain biking, rock climbing, hiking, and just about anything outdoors.
Just remember that recovery is like ten marathons, not a 100 meter sprint. And even though medical technologies and surgeons were very advanced back in 1993, they’re even better now!
Take comfort knowing there is good health and long active life after AVM. You’ll find thousands of us here to prove it.
Fear not DickD, you’re going to be just fine.
I believe there’s a chat feature here too. So whatever your preference. Feel free to reach out.
Hope this helps
p.s. the absolute worst part of the hospital portion of this ordeal, for me, was the foley catheter. It’s for your bladder. And I’ll just add, it doesn’t go through your ear 