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AVM Survivors Network

Hi all from a newly diagnosed DAVF sufferer with three aneurisms

Hi all, I’m Calum in the south of the Uk in Poole.
I have just been told I have a big AVM that has a 20% chance of it rupturing or one of three aneurisms bursting in the next 12mths.
I am currently waiting for brain surgery In Southampton General Hospital in the Uk as I’m told I’m a high priority. Scary stuff. Especially the recovery and my ability to go back to work. I’m not worried about the surgery just only my time off wirk and being able to drive after. No drink bing means no job for me. Perhaps I have my priorities wrong but that’s what my worries are.
Has anyone had the same and how did thectecovery and getting back to work go?

Calum,

Welcome! It’s great to have you. Shame about the reason we all get here, eh?

Brain surgery is scary stuff and I arrived here about three years ago about as shocked as you. I have a DAVF on the back of my head that pumped blood into my transverse sinus (and possibly my straight sinus) and made me quite dizzy, weird feeling and later on, before treatment, quite pressured in the head. Yours sounds quite an extensive thing, so you may well have different treatment than me.

Are you in hospital already, waiting for a craniotomy (= open surgery, clipping, etc) or are you up for embolisation (= glue up the naughty bits) or radiotherapy? From what you say, it sounds like a craniotomy.

If I can give you some encouragement it would be that the ability of docs to undertake this stuff is better than it has ever been and you’ll be in great hands. There is always the risk of complications during surgery and sometimes getting back to being well can be a long haul but if all goes well, we have some folk here who’ve been in and out in less than a week and really quite well on the other side.

Anything you want to ask, just ask. I found that learning about all this stuff helped me to rationalise what was going on and was my way of working through it.

Let us know what stage you’re at, when you go in and we’ll cross fingers and pray and send positive vibes and all that, according to everyone’s different ways of sending you our very best wishes.

Welcome!

Richard

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Really appreciate the message Richard. Thanks. You’ve been through the mill too by the sound of it.
I’ve had CT, MRI and Cerebral Anguigram and that confirmed what they thought.
According to the neurosurgeon I am a very unusual case as my symptom was extreme pain caused by Trigeminal Neuralgia which is known as the suicide disease as many in the past have killed them selves due to the pain it causes. It was ages by but I’m controlling it with drugs at the moment.
It turns out that I have three aneurisms on one vein and it’s one of those that’s pressing on my trigeminal nerve.
The TN issue which is why I was under investigation is the least of the issues they have found apparently Which is a davf. The surgeon said that despite specialising in avm and TN he has never seen TN caused directly by an avm. Lucky me?!?! I’m a bloody medical miracle?!?!
I have had enough ops over the year’s to not be worried about that and if I die well it won’t matter anyway. These guys in the hospitals are amazing people and I trust them totally.
I’m am to be opened up and the avm dealt with-how I don’t know but cutting the thing out was mentioned.
My concern is if I get through the surgery how the hell do I support myself if I can’t drive as then I can’t work For a year. I have about 3 months worth of sick leave I can take from wirk but I’m told I may never be able to drive again?
I’m 50 in September so it’s going to be a great half century celebration isn’t it?!?!
Does anyone know how you can get some financial support for this?
All help and advice gratefully received.

Calum

I was fifty when I had my op, so you’re in good company.

There is a scheme called “Access To Work” that may be able to help you out with your travel. What sort of work do you do? Is it simply being able to get to work or is it that your work itself relies on you being able to drive? Some adjustments by your employer may also be appropriate if you gain a long-term impairment that would then put you into the realms of the Disability Discrimination Act. It would have to become long term for that. However, if it really isn’t practical to adjust your work to fit your abilities, there’s nothing that makes an employer completely change the job to fit you. You’d have to find a different job in that case. Anyway, that should be for us to work out in the future.

I used a mix of public transport and lift sharing with colleagues to get to work. I’m on a bus route to both of our offices, though it takes an hour to get to the nearest (10 miles) and two hours to get to the furthest (maybe 22 miles). I used both sets of buses but it is really, really helpful if you have colleagues you can lift-share with. I was very well looked after.

Very best wishes,

Richard

Hi Richard, I need to drive all over the Uk for work as I work for a large demolition company taking down old power stations with explosives and using standard demolition methods.
If I can drive I can’t do the job. So I’ve no idea how this will all pan out really.
Where are most people on this forum based? Is it Uk centric?

All over the world. Mostly English-speaking but folk from almost any country on the planet. Ben’s Friends is a non-profit organisation based in Austin, Texas.

While it is not your current speciality, would there be any office- or work-from-home role you could do in your current company (or for a different company) even if that meant taking a pay cut?

Having a craniotomy will almost certainly put you out of being able to drive for some time. There is good guidance on gov.uk for doctors assessing patients for fitness to drive that sets out recommended or mandatory periods off driving. I’ll try to find that. With luck, everything will go fine and you’ll get a return to driving but there is definitely the risk that it becomes permanent.

I would think that your local Citizens Advice Bureau would help you understand what services or benefits you can get if life changes noticeably.

Any idea when you’re in for your op?

Best wishes,

Richard

UK driving guidance for doctors re AVMs here. Note, this is for medical professionals to understand rather than you or me but I think it helps to be able to see the likely possibilities:

Hi calum,

Im from the sunny southampton, uk!

So for you its open brain surgery? If the MRI/scan shows that you have a smaller area, and its reasonably safe to do so, then that would be the better option. Myself, ive had 3 AVM bleeds - my AVM was just too large, they could not even dream for open surgery for me. In the end, i had Gamma Knife in London twice.

Ive never heard of the TN, sorry to hear that. but you have been a bit “lucky” - it seems that you havent lost speach; vision; or limb use. So for that, your AVM has been smaller compared to others bleeds.

You can contact Different strokes - theres a group in southampton if you want to contact other stroke survivors there - https://differentstrokessouthampton.co.uk/ I would suggest you contact Citizens Advice; they can be very helpful. Im actually in the process right now for a claim for PIP, altho the govenrment dont give a monkeys, the Citizens Advice can try to give you advice about work and what you can get for your rights. If you wish, i could contact you the direct email for Citizens Advice Eastleigh which have been totally helpful…

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