Can I say that you’ve turned up in much the same way that about half of brain AVM patients turn up here, which is having had a brain AVM diagnosis that just frightens the pants off you. I was in exactly your situation 7 years ago and it is very scary.
I’ll give you some basics about an AVM and treatment and then my usual incitement is that you can ask us anything you need.
An AVM is a malformation of the blood vessels such that where a capillary bed might normally be found between your artery and a vein, there’s a more direct, high-flow connection. The trouble that this brings in a brain AVM is that veins are low pressure vessels, not designed for the high pressure blood and that presence of a high pressure flow can cause bulging of the vein and the risk of rupture. Consequently, you’d want to have an operation to remove the erroneous flow and reduce your risk back to that of an average 69-year-old.
There are three main ways in which this is done. And there’s a possibility that actually it is better not to do any of them. I’ll explain.
The option that most of us think of first is “brain surgery”: a craniotomy. Take the lid off, find the problem and clip off the connection that shouldn’t be there. This is a very successful approach but sounds very scary and is clearly quite an assault on your head.
The second option is catheter embolisation. This involves inserting a very fine tube into your femoral artery or radial artery, navigating it to the relevant place under x-ray and injecting glue or other “embolic material” into the join, thus taking it out of commission. I’ve had an embolisation. The thing with an embolisation is that you can only pass such a fine tube into some of the larger vessels. If you were to want to poke it into some of the tinier vessels, it would fill the whole artery during the procedure and effectively give you an ischaemic stroke. So it has that limitation. It is still more impactful than you’d believe and it carries risks associated with blobbing the glue in the wrong place, or tearing an artery wall during the navigation.
The third approach is radiotherapy, such as gamma knife radiotherapy. This is to zap the offending area with radiotherapy, causing the walls of the vessel to scar and close up. Radiotherapy is very useful for those areas where the vessels are too small to access via embolisation or where attacking via a craniotomy would require working past lots of good brain to get to the work area.
Sometimes the AVM is seated in such a difficult-to-access, critical-to-you area that actually leaving it until you’ve had a bleed (and you need rescuing seriously) is better than trying the pre-emptive strike. Having surgery in dangerous places can leave you with deficits that you wouldn’t want.
I should say that each of the approaches carries different (or common) risks and it is that balance of risk v benefit that somehow you have to decide on when the doc explains what they can see and what they propose as your possible routes forwards.
However, there are far more of us here who have had one of the three modes of treatment than there are those for whom “best left alone” is the option, so at this point it is good to be positive about what the docs might offer you.
I can honestly tell you that this sudden twist in the road frightens us all and I am no less easily frightened than you, yet I got through my embolisation nicely and I’m living a normal life, 7 years later. Not all of the road ahead is easy but we have people here who can attest to getting through it, just like you.
Ask anything you like.