I was incidentally diagnosed during a back scan in 2024. Then I was told it was no big deal by the ER doc and it was just something people had so I went on my merry way thinking that headaches, numb face/arm, and everything else is just what every had from time to time. Two years later, turns out to be a big deal. My AVM is centered on the left postcentral gyrus and precentral sulcus, so it’s nestled between my motor sensory and motor control with steal as far as language.
I’ve had all the work up and no rupture yet. The neurosurgeons here very much want me to do surgery, but I am also a candidate for gamma knife which I currently have scheduled for a month from now. There is an interdisciplinary team that wants to meet with me again next week to revisit surgery though even though I don’t want that.
I have been having worsening headaches and maybe seizures, no one knows really. I have an EEG to add to the list of tests (2 MRIs, 1 fMRI, 1 angiogram, 1 CT, in the last month) this coming week. It’s pretty clear I’ve been suffering from CSD (cortical spreading depression) as a result of the headaches from the AVM. I have the fun feature of having developed bilateral control of language and motor sometime probably in the womb as a result of this thing. The end result of that is, I don’t feel great, but I just keep on keeping on. This is getting harder to maintain though, which I thought was perimenopause because nature hates women, but turns out it is more likely age wearing down this thing in my head. The CSD is pretty non-stop so my right face and top of my right arm and hand are numb all the time while it’s going on. I started magnesium and a seizure/CSD mediation together which is helping a LOT with this over the last week.
Me:
I’m at the top of my field in a high stress job that demands rapid fire cognitive load. I am a mom to four kids presently in the home, one of whom has significantly high needs so I am her caregiver at night when I’m not working.
Solution wise, I need to not drop dead randomly. Also, I need to not have long periods of down time that my life cannot sustain because people are relying on me. I’m not sure why I’m here but I figured there must be some people out there grappling with the insanity that this diagnosis carries along with it. I fluctuate from mad, to scared, to frustrated to weird existential crisis moments about who the hell I am really. I thought maybe it would help to meet other people who have been through this or are going through this.
Welcome to AVM survivors! It’s great that you found us (and I apologise for being slow to find your post: I’m usually almost omnipresent!)
Two thoughts occur to me:
An MDT meeting is perfect: they really should propose what is most sensible for you to take forwards with much less bias than any doctor or discipline acting on their own, so if they make a recommendation listen to it. If the risks are similar either way, then the choice is yours. If they’re pushing you in a particular direction, cross-examine them on why because you may need to follow their proposal, so you need to satisfy yourself, especially if it isn’t the route you fancy yourself.
To your concern about needing to carry on functioning, who can say which route will have the lowest impact on you? Especially longer term. You need to take the input of the relevant doctor(s) to help you to decide but I would say that radiotherapy doesn’t tend to impact you immediately. From reading around here, I believe that most radiotherapy patients start to have effects at about 5 months or 6 months post zap. And the most common ill effects are some oedema, which may need intervention. Overall, it seems low impact for someone in your situation but there is a risk of zapping a bit more than the AVM itself and doing a bit of damage to functional brain, especially if the AVM is close by ‘eloquent’ areas: the team will be concerned about damaging anything ‘eloquent’.
Some people much prefer the immediacy of open surgery to the longer timescale for radiotherapy and often, there are at least as good (possibly better) outcomes via open surgery (craniotomy) as any other route. The chief concern will be access and again not doing any collateral damage.
We’ve a bunch of people here who have worried about all of these things, so feel free to ask anything you need. I’d also say that taking a second or third opinion is often wise, though honestly I’m encouraged by the MDT approach: I think that’s ideal.
I hear your concerns and many people here have the same.
I will give some different opinions for contrast. I had surgery, post rupture, and live independently 35 years later.
From an undiagnosed bleed I was out of action for 12 months and probably 5 years until I had an independent life again. Your family will have to learn to help you.
If your doctor has a strong suggestion for certain treatment then decide whether to trust them and check their success rate.
If I hadn’t had surgery I may be dead from a second bleed.
Thank you for this. They met with me and told me they found several aneurysms on re-review and showed them to me. While GK sounds nice and clean in many respects, and elective brain surgery sounds terrible, emergency brain surgery sounds really really terrible. So I have opted for the elective surgery route. Now I need to survive 27 days until they can go get the thing out really. I’m honestly terrified but at least I either go on the table or it’s done with once and for all.
It sounds good. While a craniotomy is a horrifying prospect, it is very widely used – the most common approach among all of our patients here, I’d say – so it is not a niche idea and we have literally thousands of people here who’ve gone through the same.
The key thing I’d encourage you with is that if you come round with not everything as it should be, don’t panic. Don’t think OMG that’s it. It isn’t. There’s every chance of a bunch of irritation going on and once the irritation and swelling goes down, you’ll go back to normal. We’ve had people unable to speak temporarily, unable to see temporality – scary stuff like that – but it has just been temporary.
Let us know when you go in and we’ll cheer you from the sidelines. If you’ve got any worries or questions, talk about them because we’ve got people who’ve worried about the same stuff. If we can help, we will. I do understand that you need to manage your worries your own way, so do what you need.