AVM Survivors Network

Still struggling


Hi everyone. I’m still grappling with my diagnosis and treatment. It’s been 5 years and some days are better than others. I’m 35 now and having a bad day. I get upset whenever I read something in the news. I saw an article saying that IVH associated AVM’s carry a high mortality and I burst into tears because I hadn’t known that. I saw IVH in my records but thought nothing of it. I don’t cope well with being close to death and trying to be normal after. I have been in recovery. It’s been an excellent recovery and no deficits or disabilities. I also have a small untreated aneurysm that they have decided to monitor. I had a special fear of these ticking time bombs my whole life and now I gave one of my very own. My doctor said it might regress after my cranio for the AVM. It’s so rare to have an aneurysm along with the AVM. It’s a lonely life even when surrounded by loved ones. I feel paranoid that life can be so stable after my brain bled like that. I’m wondering why I pulled through that when others don’t. I’m so thankful but nobody talks about how the fear of living after trauma can be as daunting as the fear of death itself if that makes sense. I’m always wondering, what’s next? Thank you for reading and bless you.



If this the first time you posted, that is great! If not please accept my apologies! I certainly hear what you’re saying, but from a little different vantage point. My AVM bled in May 2016, at the time I had an 11 year old and 13 year old, I was 48. My goal was to make it to 50, I was scared most of the time. That manifested itself in some different ways and thankfully everyone understood my difficulty in dealing with the fear. I had a bit of a swagger and the bullet proof attitude before that changed in a hurry. I’ve now been advised that my AVM is gone thanks to Gamma Knife, but I’d think about the bleed and time following. That thinking was everyday. For me the fear subsided, but I’ll think about it for the rest of my life, and be thankful in so many ways.

I personally wouldn’t be able to forget about it and move on, but I’m giving my best shot to remember it and move on. If that makes any sense. I’m thrilled t be art of this group, and the people here, we are a little bi unique but have a far greater depth of understanding of each other than we realize and for sure more than most. Take Care, and I hope I didn’t ramble too much. John.




I can only say you’re among friends and comrades here. While an intraventricular haemorrhage is nasty, only today have I read of another person here whose daughter has had an IVH several years ago. I also know perhaps a handful of people here who have an AVM and an aneurysm, and there will be more – I don’t know everyone here. So, you are not alone.

I’m doing very well – I’ve avoided a bleed of any sort – but I think most people who’ve had a cerebral bleed have bad days, hopefully more good days than bad. It comes with the territory of being a survivor.

So, I hope we can cheer you along from time to time.

You’re not alone.


That’s the magic of having a global network of people hanging together.

Very best wishes