We live near a hospital that doesn’t have neurosurgery so we’ve been referred to one about thirty minutes away.
When my child had a nocturnal tonic-clonic, the ambulance took us to the closer one, even though I told them about the AVM and that we should go to the other one. They said it has to be the nearest hospital.
Now what really scares me is what if it ruptures, what do we do? The local hospital wouldn’t be able to operate and the other is half an hour away if we were driving…
GL - I was driven with an active bleed for 7 hours to a hospital which couldn’t do anything for me & sent me to another hospital another 30 minutes away
Unfortunately, you will need to be at a hospital with a neurological unit
At least that’s how it was over here in the US.
I know it’s not exactly what you’d wanna hear - I def didn’t
The only things the first hospital did for me was a CT & then a MRI
Thank you. I asked the same question in a UK group and the consensus seems to be the nearest one to stabilise and transfer if needed.
My understanding is similar to what you say: first stop is at the local hospital to “stabilise” and then a transfer to the bigger hospital to do anything more than that. I assume local A&Es have an emergency neurosurgery capability but not a wider neurosurgery practice.
What I’d encourage you is that discovery of an AVM doesn’t immediately mean it’s going to bleed. It’s a very frightening time and I was just as rocked by the discovery of my AVM.
I first discovered mine in about Sep 2015 because I could hear the whoosh, whoosh of the blood sneaking from artery into a vein that passes my ear, so the rough squirting of the blood each pulse I could hear. I asked my doctor if I had a lot of wax in my ears (because you hear a lot more internal things when your ears are blocked) and he said “no”. So I parked any concerns until I felt it was getting louder. By April 2016, I decided it was definitely louder and started googling things. I discovered the possibility of an AVM or DAVF and made an appointment with my GP. She referred me to ENT, I think because I could hear the noise in both ears rather than just one, so she made a referral for tinnitus.
I got to see the ENT in August 2016. He confirmed AVM and referred me for an MRI and then to neurosurgery at Nottingham (I’m in a similar situation to you where my nearest hospitals are in Leicester but don’t have a neurosurgery practice). It then took until April 2017 to have an operation to fix my DAVF.
So that’s at least a year from “something’s wrong” to getting it put right. So please don’t go round worrying that he or she is bound to have a bleed this week or next because it’s just too worrying a way to lead your life. The one thing I did was to buy a medical wristband and put my NHS number, condition and emergency contact details on so that if I was found inspecting the carpet really close up or making even less sense than usual, someone might get me an ambulance and the medical crews would have some extra clues as to what might be going on. That helped me settle a bit while I waited all that time.
Hope something here helps,
Richard
Thank you, Richard, that does make me feel a bit more reassured but it’s the epileptic seizures combined with an AVM that scare me to death.
Did you have seizures?
Are you AVM free now?
I didn’t have seizures. I had a whole bunch of noise in my ears and dizziness and I worried myself to bits. I struggled to sleep due to the dizziness and it seemed to develop quite quickly over time for me, though I think this could be to do with it being a DAVF – so affecting the arteries/veins in the Dura Mater meningeal layer – but the hospital remained resolutely “you’re on the elective surgery list” until the March.
I think the key things are:
Others can help you re seizures.
My AVM (DAVF) was embolised in the April. It is still in situ but filled with glue, so perhaps “neutralised” rather than being removed. I’m happy with that.
Nearly 5 years afterwards, I’m perfectly well. I have rare occasions when I feel less well but today I can tell you I feel perfect.
That’s brilliant, I am really pleased for you.
Thank you for the reassurance.
Firstly sorry you’re going through this
But what Richard says is right in that although it’s hard not to worry, worrying won’t help you. It will just make you stressed and feel worse
And secondly to reassure you, even very serious avms sometimes don’t bleed for almost entire lifetimes so you don’t want to worry about worst case scenario of what might not happen
Sorry if I’ve missed anything but do you know the grade the avm is or how serious it is
Hi and thank you. We don’t know a lot, only the location (left parietal lobe) and MRI said it’s 5cm.