those of you who have an inoperable AVM because high risk of complications (disability or even death) - how did you learn to live with it? Mine avm is large, but we didn’t dare to have a trepanation and the only treatments I’ve had are radiation therapy and embolization.
How did you come to terms with your diagnosis? Do you still get anxiety? How do you cope?
I’m in therapy, but I still have setbacks — like right now. I have an MRI coming up, and I’m terrified that there won’t be any improvement, and that I’ll have to go through this hell again.
It’s really hard to accept the “new me.” There isn’t a day when I don’t think about my condition. It makes me angry that my life now has so many limitations, and that I can’t see a future or a sense of purpose anymore.
How do you find meaning? What helps you?
I do find small good things in my days, and I’m grateful for them — but that doesn’t erase the rest of what I feel. I’m just genuinely interested in your stories. Maybe I can learn something from your experience.
And I’ll share what helps me. My dog makes me so happy every day. I hope I can be with him until he’s old, be him support.
I want to ask a little about the treatment of your AVM, because there are many, many people here for whom having open surgery was not a preferred option or even an option but who have had either embolization or gamma knife or both. That doesn’t really translate into “inoperable” because you have had some operations, they just weren’t open surgery type operations. Does that make sense?
There are a bunch of people here, a smaller group of people, who’ve literally been told “watch and wait” – take no action at this point – because to do so would be damaging: that’s an even more challenging situation to be in than yours, perhaps. Those guys are the “inoperable” ones.
So if I can ask about your treatments so far, what degree of obliteration are your doctors hoping to get for you? Have they told you that they’re hoping for a complete obliteration or have they indicated that it is more likely to be a partial obliteration? I understand that if the prospects are only to reduce the size of the AVM, it remains much more of a worry.
With the gamma knife, it does take a long time, so it is good to get your mindset into a way of coping and I hope some of the gamma knife patients will share their thought process. I think it might be helpful to think of it along the lines of every day into the future is a small step towards being safer: that you’re getting better over time. It is unhelpful to focus too much on the remaining risk but instead to take a positive view of it. I think.
I had to go through several months of getting less well with my AVM before I was able to have an embolization. I worried my way through all of those months and I worried my way through the recovery months afterwards, as well. So I think worrying about these things is pretty normal.
The main comfort I took while I was waiting for surgery was to wear a medical wristband. I reasoned with myself that having a wristband that told anyone who found me that i had a medical condition and that if they find me apparently having a stroke, simply to call for an ambulance, would lead to better outcomes for me than if they didn’t know what to do. There was a better chance of being looked after through having that piece of information with me 24 hours a day, or at least while I was out in public on my own. So maybe think whether having a medical wristband would help you to feel more settled. My wristband said something like my name, my hospital number and “Richard has a dural arteriovenous fistula, right occiput. Care of QMC Nottingham (= the hospital name). In case of stroke dial 999,” and my wife’s mobile phone number.
I’m so sorry — I truly didn’t know about cases like this. In my understanding, embolization and radiation therapy were just procedures, but it turns out they’re also considered forms of surgery.
actually I don’t know what degree of obliteration my doctors are expecting, but since my AVM is large, I assume I can only hope for a partial obliteration. I’ve also heard that it’s often necessary to undergo radiation therapy again 3–4 years after the first treatment.
Thank you so much for your support and for sharing your experience.
I just want you to be more positive about your situation! “Procedure” and “operation” are synonyms, so you’re not “inoperable”, which directly translates as “cannot be operated upon”, because you’ve had at least a couple of procedures towards treating your AVM.
It’s going to take time but you’ll get better than you are today
The other thing I reminded myself of as I was having my procedure was that the aim is not for zero risk of a stroke but to reduce my stroke risk back to that of an average fifty-something. Zero doesn’t happen. All we need is to be back towards what everyone else takes for granted.
Hi Nana. Just thought I’d chip in and say ‘welcome’. I’m in the exact position that Richard describes. At 14 I was diagnosed with hydrocephalus and shunted. 11 years later I found out about the direct cause, a cerebellar AVM. Mine is large too (5cm+). In my younger days I was once offered Gamma Knife - with at least 3 embolisations first, all carrying A LOT of risk. I turned it down and said I’d reconsider when I was older. But guess what? I don’t feel that time has come yet. Until my late 40s I had regular MRI appointments to monitor everything. The advice of the docs was always the same - ‘don’t touch it’. I’m really lucky cos I don’t suffer that much with side effects and I’m thankful for that every day. But like you, this is always with me. I can’t forget it or pretend I’m not really scared of what might eventually happen. But I tend to be quite a positive person - about this anyway. And I surround myself with things that take my mind off it. I have a great family life, a lovely home and a good job. I exercise regularly, have outside interests and keep my brain active. And I’m still here, which is a bonus. I do get very anxious about things sometimes and also annoyed with myself when I lose my balance, when I’m clumsy etc. But then I remember we all have our crosses to bear. Best of luck to you. Lulu x
