AVM Survivors Network

My first Post-AVM Visitor


I was barely back home after a couple months in the hospital after my AVM bleed and operation some years ago. An old friend from work, who had been one of those
that I had worked for, and had been one of my favorites there, called and asked if he could come to my home for a visit. Wife took the message, and asked me if I wanted visitors and I said “For him fine, tell him to come over.”

When he came over the next day, I came out into the living room to see him, and he looked shocked that
I was in such poor condition. Those of you who have
suffered through an AVM cerebral bleed, and craniotomy
will appreciate how poorly I felt, and I suspect that I
looked even worse than I felt!

But I still appreciated an old friend visiting me, even
if I looked half dead! I will never forget it, and I appreciated it! In a few months I got to return part time
to work, and then later back to full time. In time I was back close to how I used to be, even though there had been times that I thought I would never make it.

Remember those of you walking in similar shoes, that it is possible to come back fully. I did, and I hope that you will also!


It’s good to have a friend like that I had what I thought was a good friend but I guess it was nothing more than an acquaintance that’s when he visited me in the hospital after my rupture and craniotomy he was so freaked out about how poorly I looked that he never came around again cuz he said he couldn’t deal with it and I thought to myself I’m sittin here with my head cracked open and tubes in my head what’s he have to deal with!?
but it is what it is; this type of situation defines who your true friends are…


Thanks. It’s really encouraging to hear. I know people say it takes a long time. I’m one year from the bleed and ten months since the craniotomy. Also on the cerebellum.
It feels like forever.


So I feel humbled to share space with people like you guys, who’ve been properly through the mill. And all of this is a big education for all of us, don’t you think? I should say that any friend who finds us in hospital or at home, aged maybe 30 or 20 or even less would be amazed that anyone so young can have a stroke. But we’ve learnt that all of a sudden – you guys by doing it the hard way – none of us thought in our younger days that you could have a stroke at that sort of age.

I’m not very good with blood, to be honest. So visiting some people in hospital would not be the thing for me. Working in the Emergency Room would be a complete no no. Just no way I could do that. Maybe someone with a big zipper of staples showing I’d struggle to cope with, I don’t know. I’ve had to deal with my own blood (generally very badly) and with others but it is the exceptions that stand out – the one occasion that I’ve actually been able to successfully deal with a road traffic accident victim – only one, actually. Otherwise, I can’t do that.

But I can support here. I can write and I can think and I can do this sort of thing.

So maybe, Mike, your friend was just well outside his expectations / comfort zone. However, I agree, disasters such as these show you who your true friends are.

Very best wishes,



I understand your reaction to blood. I have a similar one. Many years ago we had a coworker have a knee operation. Four of us went to visit her at the hospital. Two stood next to her in the hospital bed. Myself and another stood by the door. We were both sweating and trembling. We looked at each other and I said, “Let’s go out for a cigarette.” We stayed out of the hospital.


I totally agree, nothing like feeling uncomfortable to show ones true colors. A real friend always will do things that make him uncomfortable if it will help his friend. I also had a cerebral bleed. Some friends showed and some didn’t. One of my good friends didn’t like the way I appeared in the hospital, with all the tubes and bolt and what not., the first time he came and saw me. So the other times he showed up a little drunk, liquid courage. I told him alcohol doesn’t matter, just being here is great. But it’s like I say, “There are always positives, you just have to see them”. When I have lost a friend because of the changes, I’ve found new ones waiting to step up and help. Usually they are a better grade of friend. I struggle with many new obstacles these days, but in the end it’s an attitude thing. Look for the great and ignore the trash.


Hi, all!

I would guess that most of us would say that some friends showed up after our surgeries, and that support was there for us during the immediate crisis. But, down the line, when reality hit us and we really could use a boost, only a few, true friends hung in there to accompany us on our long journey. So thankful for them!



Yes, for sure. In my case my best friend had already died of a cerebral bleed. I always wondered if

we became friends because we saw something in each other that no one else could see. Something

hanging over each of us. Fortunately, I did have my wife, and two mostly grown children, and my religion, and my

collecting interests, and those kept me going until my condition improved within about five years.

Those who lose their very best friends, and spouses, surely have a much more difficult time of it returning I am sure.


So strange, John,

My best friend died about a year after my AVM struck and it was from seizures. Being that seizures are one of the chief signs of an AVM, I always have wondered if HER seizures indicated the presence of an AVM…undiagnosed by her doctors. Her mother never mentioned it and I felt it rude to pry. Remember: This was about 25 years ago, when AVMs were largely undiagnosed and fatal. Even if she knew, her mom may not have wanted to say. I’ve just always wondered…




Those seizures in your best friend came from something, Didn’t they?

It is strange, and sad also. I can understand you not wanting to pry by asking your friend’s mother

about whether or not there was a diagnosis of an AVM. But you do wonder, as I do about my friend.

I know that you badly miss your friend, as I do mine.

There is more also. My best friend had a sister, and no other close relatives
besides his old parents. The sister was married to a man, who also died

from a cerebral bleed just a few years before he did. He told me about that when he was still alive. That was diagnosed

as an AVM. Of course, they were not related by blood at all.

But despite AVMs, and difficult recoveries, it is so true that life is good!

It is worth all the struggle.

My best to all AVM survivors.




Oh my! You see, you never know what is lurking in our bodies! Yet, we move about in everyday life as if we have no “expiration date”, so to speak.

I went to a continuing education conference many years ago and one of the speakers was Dr. Charles Drake, a neurosurgeon from Ontario, Canada. He spoke about AVMs and the very risky surgeries he was performing. I had never heard of AVMs, never had a patient in the ICU with an AVM… Well, five years later…

Yes. Life is good. As my dear cousin said many times as he lived with lung cancer (7 yrs), “It could always be worse!”