Stroke from an AVM

Dear fellow stroke survivors

I had a Intra cerebral haemorrhage in 2019, the bleed was in my frontal lobe on the right side. I was extremely lucky to survive it but I did and I’m so grateful. I was left with a weak left side for a while and a sore tongue as I nearly bit it in half as I had a seizure when it happened. I was also left with terrible headaches just at the site of the bleed, I was told it’s very unusual to have this type of stroke and it shouldn’t happen where it did??

So I got on with life and 3 years on I just suffer with fatigue and headaches, until Jan this year, I had a further seizure type thing happen in the middle of the night! So off I went to hospital, initially I was told there was nothing wrong, then 3 hours later I after a further scan I was off to Bristol as they found an AVM, then they said no it’s all ok and sent me home with 3 follow up scans 3 months apart. So after the third one it was decided I have an AVM, sorry I can’t begin to spell it out but basically it’s a group of veins and arteries which look like spaghetti and are under great strain and risk of rupturing? This is what caused my stroke? I wish they had found it out earlier. I had a CT scan where they put a tube in your vein and thread it up to the brain area and pump ink in to establish where it is and his big. They have said something has to be done as I’m at risk of another rupture. So now I’m waiting to either have open brain surgery or Gamma Knife radiation to remove the AVM. I’m having a functional MRI on the 22nd August to establish best course of action.

I would ask if anyone has any knowledge please share it with me as I’m new to AVMs but experienced in strokes, well as much as any is. Many thanks for reading this.

Best wishes Paul

Shwmae Paul, Dr Jill Bolte Taylor’s book, My Stroke of Insight is about a stroke caused by an AVM. She opted for surgery to have it removed. She writes about it in quite a bit of detail. The rest of the book is a bit fluffy.

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Rups

Many thanks for that I’ll try and find the book.

Thanks again Paul

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@Huggybear firstly welcome to the forum and I’m so sorry your having such a hard time it’s awful and not fair at times. I hope you get the right treatment and sorted very soon. Best wishes Loraine

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Welcome to the group I hope you find the support that you need with kind regards des

Hi Rups

I found the video and it was very interesting and the Dr and myself had very similar experiences.

Thank you again.

Paul :+1:

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