UK AVM survivors …

General
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Hello everyone, i had a seizure on friday evening which led to the diagnosis of AVM. A CT scan found that it’s located on my left occipital lobe at a size that of 31.4mm.

I wanted to come on here and ask what everyone else’s experience has been in the UK with the NHS. how long did it take to have surgery? how was recovery? ect….

I’m only 19 so i’m very scared and i am about to begin university. i’ve been told to try and live my life as normal as i can. I’m currently on anti seizure meds too.

Any advice/ help or anything really would be much appreciated!

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Hi @claudbm! Welcome to AVM survivors! It’s great that you found us because your questions are exactly why we are here.

Overall, my experience of the NHS was good. I’d say that unless you’re actually having a bleed at the time, you’re basically put onto the elective surgery list and so you wait for your turn to be at the front of the queue. Everything takes longer than it should.

For me, I had a dural arteriovenous fistula in my right occiput. It didn’t have a nidus – just a straight shunt from artery into my right transverse sinus – and very much on the surface.

I could actually hear my AVM – I could hear the distorted flow of blood in my transverse sinuses as the volatile flow went past my ears, so I pretty much self-diagnosed in April 2016. It took until August to see an ENT (my GP decided it was tinnitus that I could hear rather than a whoosh, whoosh pulsatile tinnitus). It then took until the September to have an “urgent” MRI followed by another month to have it reported on. Then it took a month to be referred to neurosurgery in Nottingham.

When I saw my consultant interventional radiologist in November 2016, he told me that if I went privately, he could probably get me in by Christmas; otherwise it would probably be March/April 2017.
I made it through January, February and March. My DAVF appeared to be changing quite rapidly (which I think is unusual compared to a more ordinary AVM) and I became dizzy, the noise of the pulsating blood flow got louder and louder and I had occasional significantly dizzy spells. Through all of that waiting Jan-Mar, I kept talking to my GP or the hospital as things changed, concerned that the scan I’d had in the September was getting to be out of date and maybe I needed to move up the list. It’s an interesting challenge as to how much fuss you make: only the doctors can know if you’re worse than the person they’re expecting to see before you on their list.

I had a catheter embolization procedure to block off the naughty connection in April 2017. I worked all the way through to the weekend before the op but I took 2 weeks sick afterwards followed by a week’s leave – the longest time I’d had off work since 1986!! But I only spent a few days in the hospital.

Actual recovery – getting back to feeling “normal” takes much longer than three weeks. We can talk about that later!

Ask anything you like. I think we all understand the concern about the direction that life has suddenly veered off in. We can share anything that we went through, our own experience, what we did about the worries, etc. Just ask.

I hope others will jump in as well. Not just me!

Very best wishes,

Richard

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thanks for the reply!
do you have any tips for just day to day living? it’s all i can think about at the minute that i have something on my brain and that i will eventually need surgery. i’ve been told to avoid alcohol, take my meds and just live as normal as i can and only to be worried if i ever get very sudden bad headaches.

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That’s all perfect advice!

The main thing that was worrying me was basically “Will I make it to surgery?” and I did but it is a concern and it does occupy the mind.

In terms of feeling ok through the day, I bought myself a silicone wristband with my name, NHS number on, a brief description of what we knew at the time, my wife’s mobile phone number and an instruction “In case of stroke, dial 999”! Since I was obliged to stop driving (it was making me dizzy) I spent more time among strangers as I made my way to and from work, so having some information to help them help me settled my mind a bit. I also put my wife’s ICE phone number on the picture on the lock screen on my phone and these days you can save medical details etc in the Safety app on your phone. These things just helped me feel like I’d be better looked after.

We also had a very safety-focussed approach at work, with regular “safety moments” in meetings etc, so as one of those safety moments I introduced my colleagues to my condition and told them that if they found me unwell to take it as real and important. I talked them through “FAST”.

In regard to this thing just being on your mind all the time, I spent a decent amount of time here reading and understanding what this is all about. Sometimes you’ll find it encouraging and sometimes you’ll find it hard. Use this place to help you. When it’s not showing you what you need, take a break, but hopefully we’ll show you that there’s good survival to be had even if it decides to bleed and being much younger than many, your body will recover better.

I also decided to start a new hobby, one that would occupy my mind, so as to try to reduce the time spent thinking about it all.

I hope others have got different ideas of how to cope because I think I’ve given you my full list in one go!

Very best wishes,

Richard

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Hi claudbm.

So glad that Richard was able to give you some advice and hope you found it useful. I feel really bad for you as you’re so young - this is a lot to deal with! I’m in the UK too so just thought I’d drop you a quick line to say ‘Hi’. I found out I had a ‘medical problem’ at 14 but didn’t know I had an AVM until I was about 27. Mine is in my Cerebellun and stupid thing is too near essential brain structures to treat. I was given similar advice to you - ‘go and live your life and don’t worry about it’. Like anyone can do that! But anyway…I’m living with it and fortunately so far it hasn’t been too bad a ride. I’m in my 50s now (just) and only telling you this to try to put your mind at rest a little. Yours won’t necessarily burst either so please try not to be scared. But I do completely get your wish to have surgery etc and wish you all the very best with it. I think the best advice I could give you would include try to avoid stress, keep your blood pressure low, exercise but nothing too strenuous, no weight-lifting, no scuba diving and if you are female and ever have a baby make sure your physician knows about your AVM.

Lulu x

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Hi,

I had my first seizure when I was at home for Christmas from my first year at Uni. I was diagnosed with epilepsy and put on anti-convulsant medication. There were no MRI’s or CT scans back then for seizures so the AVM was not diagnosed until I was 50. During the years in between I suffered infrequent seizures because I was not on the correct medication for seizures caused by an AVM, but also during that time I completed 2 degree courses, and had a career. Since my diagnosis I have been on the correct medication and have not had a seizure in the subsequent 11 years. I was scared at 19 after my first seizure and again at 50 on the AVM diagnosis and somewhat obsessed by this ‘thing’ in my head. The fear is natural but it will lessen with time if you carry on living a normal life with all it’s distractions. Having a seizure alone can knock your confidence at first but it will pass, and you will have been put on the correct meds. I had radiosurgery in Sheffield for my AVM, but I will not talk about waiting times etc. here because you do not say which treatment you have been advised to have.

We both started our AVM journeys aged 19 - albeit mine unknowingly - and I expect that you will in years to come be able to post to other people trying to reassure them about their forthcoming journey.

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Thank you for the reply and the advice, it’s much appreciated it! My worries and anxieties about it are getting better as the days go on and reading all the advice on this page had definitely helped!

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Hello! thanks for the reply, i also did become a little bit obsessed about the ‘thing’ in my head too but it’s getting better and reading the posts and replies definitely has reassured me too.

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