Stroke, AVM and blood thinner Clopidogeral

Hi everyone I hope this finds you all well.

I am now 74 and have had a right parietal AVM all my life but it was not discovered until 24 years ago when I had a cycle accident and suffered a subdural heamatoma which was unrelated to the AVM.
Fast forward 20 years and after a bang on the head I started to have partial seizures after investigation it was decided that the AVM was responsible although it had not bled. I had Gamma Knife 4years ago and will soon be going to have my final scan to see if it has worked.
So much for the background.
In January this year I had a PACI stroke from which I have fully recovered, Thankfully,
The problem I have is that I have been prescribed the blood thinner Clopidogeral by the stroke consultant at NGH. I have tried in vain by email and phone to speak to my neurologist at OUH, a different hospital, to see if I should be taking these drugs and what the risks are. I have not received an answer.
Incidentally the stroke was not anything to do with the AVM.

Can I ask the community if there’s anyone out there that has had a similar experience in dealing with a stroke and a AVM.

The advice I was given years ago was if you have an AVM, blood thinners of any sort, aspirin, ibuprofen were a complete no no.

Micko

Micko,

Good to hear from you, though not ideal circumstances.

I agree with you about the general advice on blood thinners etc. I guess the trouble is you’ve had a stroke and the action for one area contradicts the other.

If you’ve got a narrowing of the artery in one of your key circulatory routes in the head and that your PACI stroke was an ischaemic stroke – a blockage – of that key circuit then the risks that you’ll have a further blockage are higher than average.

On the other hand, if you’ve got an AVM that you’ve had without it bleeding for the last 74 years, it’s tempting to think of that bleeding as lower risk: it hasn’t done it in 74 years, it might start now or it might last you forever.

So you’re stuck in that unideal space of needing to choose your risks, I suspect.

I think it’s fair to say that the thinners only cause you a risk if or when the AVM ruptures. It doesn’t cause you a problem so long as the AVM and the veins it flows into stay intact.

Definitely talk to any of the doctors about it but I think this is the issue. You may just need to choose the route forwards that you’re most comfortable with. You’re betting on either red or black: those are the only choices.

I hope these thoughts help :grimacing:

Richard

Hi Richard.

You have succinctly put the thoughts that are whirling around in my head.

The problem I have is that I cannot get information from my neuro-vascular surgeon at the moment although I am still trying. Until I can get his opinion as someone who knows my case well, regarding the AVM side of things It’s going to be difficult for me to make an informed decision one way or another.

Either way as you say it is going to be another Rock and a Hard place decision.

I have my final fourth year after gamma knife MRI in early March. Maybe there will be no AVM left to worry about :grinning:

Any way thank you for your thoughts you have been most helpful.
I will let you know what happens.

Micko

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Micko,

If you’ve got that scan in March, that should be a good opportunity to agree what the AVM side risk is. Hopefully (it’s never nil) back towards whatever risk most people have, in which case it’s an easier choice. I think it’s almost ideal timing.

If it seems unwise to go with the thinners, I’d ask what other steps you can take: do you tend to not drink so much fluid: would improving your fluid intake do some of the job? Does winter and the cold weather increase your risk / would keeping warm be something to do? etc, etc.

I was almost of a mind that you’d want a bit of a scan to understand the AVM risk (but seems a big thing to ask for) but if it’s happening anyway, that’s really good timing.

Do let us know what advice you get because you’re definitely not the only person who’ll be faced with this choice.

Very best wishes,

Richard