Urgent UK consultant needed

Regional Groups Europe AVM Survivors
1

desperate to find an experienced brain avm consultant around Oxford/Aylesbury/Milton Keynes. Can anyone help

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2

@DickD and @Mel - I believe the two of you are my favorite Old Country AVM’rs. Any insights?

TJ

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3

Yeah, I don’t know that part of the world really. @Lulu1 is nearer. I know of John Radcliffe Hospital in Oxford but we don’t have satisfied reports from @Mickeboy about John Radcliffe.

Birmingham would be a larger centre, or NHNN in Queen Square in London. I was seen in Nottingham.

4

Hi Richard. Yeah John Radcliffe is the hospital I use. Its the nearest neuro hospital to where I live (Milton Keynes). My consultant is Mr Rufus Corkilll although I more commonly see his deputy Mr Jash Patel. Personally I’ve always found this hospital to be fine although my AVM is untreated so I’m unable to comment on that.

Cheers
Lulu

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Thanks. That’s good to know.

I think @Mickeboy finds Mr Patel ok, actually, but hasn’t been happy with other treatment at JRH.

6

My only treatment there has been on my Shunt - last revised in 2007. I guess I haven’t got anything to compare it with. But I have been happy with my treatment up til now.

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just had my gp refer me to neurosurgery at oxford. i emailed christos tolias at kings and he recommended i see Mr Jash Patel for my unreatable dAVF

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8

Out of interest does anyone also get migraines? and if yes do you see anyone in oxford/milton keynes/aylesbury?

9

I think 50% of people with a brain AVM get migraines, so you’re definitely not alone.

10

good to know. the pain is beyond bearable and now my meds are not working and GP just throws hands up in air saying im on max levels. so now i need to find a migraine expert. i cant live like this anymore

11

I’d consider getting the GP to refer you to a pain specialist, if such things exist in the UK; they do exist in America and other places and people here go through similar pain difficulty to you.

I can’t say that there is always a solution for the pain but trying out different things and getting the input of someone other than your GP would be good. There are other people going through this. If I find a conversation that I think is relevant to you, I’ll link you into them.

12

Hi jap001. Just out of interest have you already had an MRI and angiogram? Just wondered if anyone has investigated the possibility of something else causing the migraines.

Lulu

ps in my experience GPs know very little about AVMs.

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13

I went to The Hallamshire at Sheffield. They are really good. I know it’s out of your area, but maybe go there because of how good they are.