I have been diagnosed (just before Christmas) with a cerebellopontine angle davf. I have also had a couple of small bleeds. I’m still awaiting my appointment to find out what this actually means.
Are there many folks here with similar diagnoses?
Thank you for your time.
Kindest wishes to all
Welcome! I’m up in Leicestershire. I’ve not heard of a cerebellopontine angle DAVF but I definitely had a DAVF. Mine was injecting blood into my right transverse sinus and giving me some very weird feelings in the head.
I’ll have to research yours to see a bit about what it means.
Welcome!
Richard
I’ve done a tiny bit of reading and my take on it is that it is at the join between the cerebellum and the pons, so you may have more in common with people in this community with AVMs in either of those locations.
In general, operations to intervene in the cerebellum are more rare. There are definitely a few people here with cerebellum AVMs that have had an operation. I’m sure I’ve seen some pons people, too.
Interesting that it is referred to as a DAVF or AVF rather than an AVM.
When is your next appointment? (And where are you being seen? I was seen in QMC Nottingham, despite being in Leics).
Very best wishes,
Richard
Good Morning Richard,
Thank you for replying and the lovely welcome.
Hope you’re keeping well?
Leicestershire, we are practically neighbours 
I saw a neurologist in January, (for nerve damage & mobility issues). I did ask them about the MRA findings of arteriovenous fistula. As I wondered if it was linked.
It was they who told me (& later confirmed in a letter), that it was a DAVF located at the cerebellopontine angle. And that I had had a couple of dural bleeds (I’m still not sure what that all means).
They assured me that it was all nothing to worry about. I was told it’s extremely rare and I’d have to wait until they could find a hospital to take me on, as they didn’t have any specialist neurosurgeons in this county.
Hence I’m still stuck in limbo waiting.
My gp has been lovely as sadly I’ve been slowly getting worse. I know he’s trying his best to push things forward for me, but has said with the virus it’s difficult.
I’m expecting a telephone consultation with the memory clinic by the end of this month, as I’m now showing some very worrying dementia like symptoms.
I’ve been told not to worry. That my migraines, absolutely bizarre sensations in my head, extreme vertigo etc are nothing to do with this DAVF. They have said the only possible connection is to the extremely loud noise in my left ear?
Yet I can no longer do the things I once loved. I struggle with lifting anything, I’m constantly sick and nauseous. My vision is bizarre, and my migraines absolutely floor me.
I’ve always been quite upbeat and strong, but whatever is going on with me has really ground me down.
So I’m trying to be proactive and do a little research of my own. I even asked for my medical report regarding the MRA but was told due to the pandemic I’m not alllowed?
Are bleeds common with DAVF’s? Is it usual just to leave them to heal on there own?
Sorry for rambling on abit much here. It’s just lovely to be able to talk openly.
Thank you for allowing me too.
Kindest wishes x
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Hi,
I don’t know everything but the things I know or believe are…
DAVFs are assessed on a different scale from more classic AVMs – the Cognard scale – see an entry for this under the AVM 101 category on the home page. It seems that if you have a class I DAVF, it is usually left alone; if it is getting higher up the classification, intervention is more often recommended.
I’m pretty sure mine was IIa+b (I’d need to check the scale again to be sure) but even then, hospital saw mine as an elective operation.
Operating in or near your cerebellum is more dangerous, so you’d need to be comfortable that the risks of intervening are less than the risks of leaving it alone when you do get to talk to a neuro. Quite probably, you’d need to talk to an interventional radiologist rather than a neuro because if think you’re more likely to have an embolisation treatment or radiotherapy rather than open surgery in the cerebellum.
My doc was at QMC in Nottingham. It may be that you should ask your GP to see if they can do a referral to neurosurgery in Nottingham and they would engage an intentional radiologist as part of the neurosurgery practice there. Other centres that may be relevant would be in Birmingham or perhaps John Radcliffe at Oxford. Sheffield have the main radiotherapy practice in the UK.
I do think the things you’re describing sound relevant to your DAVF. And I think stuff going on in the cerebellum gets to be more weird than elsewhere.
If I can help in any further way, just say.
Very best wishes,
Richard
HI there. Sounds like you’re having a time of it! I’m not sure what a cerebellopontine angle davf is to be honest. But I just wanted to say hi and welcome to the site. I’m in Milton Keynes so probably not too far from you and have a cerebellar AVM with hydrcephalus.