Dural Fistula members

I was wondering how many of you with a brain dural fistula have a lot of ear pain and ear fullness?

Hello! Long time no write!

Yes, I am thinking I’ve got a bit of fullness in the ear and regular tinnitus. I’m going to see the doc next week about being able to drive and don’t really expect to be well enough, though my consultant interventional radiologist believes he has 100% embolised my DAVF.

I’m wondering if I have a bit of Méniėre’s disease going on and whether that can be consequential to the DAVF.

Hope you’re doing better than you were!

Lots of love,

Richard

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Hello Richard! Yes, long time. I had no idea you had already had the emobilisation. Where did you have it? I can’t remember now where you live? So, you are still not feeling good? Maybe it will take time. Was it just one procedure? Are you back at work? I am still the same unfortunately :confused:

Hello,

Yes, I had just one embo in Nottingham. Story here.

I’ve been given the “all clear” but I’ve been getting more concerned the last couple of weeks that that might not be so, or that I have some other complication – the DAVF might be fixed, but maybe I’ve got something else driving my dizziness.

Sorry to know you’re the same. I don’t know why I would expect any different. Have you got anywhere with persuading a hospital to help you?

Richard

My DAVF is on my left side and was formed in 2011 - My menieres was diagnosed in 2004 and its on the right side, My right ear does feel full and sometimes like a cold burning sensation like if I had been in the snow skiing all day which of course I dont do now. Also certain sounds make me super angry which is typical in menieres- My mom was 1st diagnosed and she actually was the one to tell me when I was complaining about my ear that I probably had it. So I went to her ENT and he confirmed I had it. It has something to do with us hearing some sounds better than others. When I here Art Garfunkels voice I want to stab someone- My husband who has that musical ear says Art has a perfect pitch voice but I can not stand it. I also have to leave restaurants if there are people slurping their soup or loud kids. Luckily my whole family understands I cant control this and if we walk into a place they know right away we have to leave. Apparently we will lose our hearing in that ear- So far after 13 years mine has stayed the same and gotten better with diet changes. But if I have too much salt I get terrible vertigo and headaches and have to stay bed bound for days. I am careful what I eat and where I eat.
Where my DAVF is behind my left ear and I feel like someone is pulling my hair and it itches there? DO you have that feeling?

Mine is more back of head but has implications I think round past my ear, hence I had pulsatile tinnitus.

I don’t have many symptoms… just fullness of ear, bit harder of hearing than years ago, dizziness (I’d say mild so far) and regular tinnitus which seems a bit worse. I don’t have big “attacks” of dizziness. I had one 5-second attack in February but I have had other (2 second?) losses of hearing recently.

Richard

@DickD With Menieres we continue to loose our hearing and I have read that I will eventually loose my hearing -
Changing my diet has really helped- I dont ever use reg table salt, nothing marinated and limited process foods, I can only eat like 2 olives and I drink lots of water. I use Celtic Sea salt and if I am feeling dizzy I either put a pinch in a glass of water or right under my tongue- It does not taste at all like reg salt.
I cover my ears when its cold and try to get enough sleep.
I take zofran which dissolves under your tongue when I am really nausea
I dont drink reg coffee past 11am before I could drink espressos at night and be fine but that seems to make the sound in my head worse.

Angela

I have seen a number of people but I haven’t found an real expert in dealing with a Dural AV fistula. So far I have seen:
Mr Peter Bullock
Dr Maneesh Patel
Dr Andy Clifton
But does anyone on here know of someone more specialist in/around London? I’m going round in circles and getting so confused. I just want someone who does this every day and is the best.

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@jap001 From what my doctor told me who is the head and founder of neuro radiology at Stanford who sees people from all over the world he says he only see’s about a dozen people with DAVF -

@jap001 Have you tried this place