3 years after AVM removal Help

Hi 3 years ago my daughter had left frontal AVM removed during full 8 half hour surgery she’s young fit healthy a dancer but she’s exhausted all the time realy tired and recently she’s had numbness in her hand feet groin all down right side has anyone else experienced this also her headaches are unbearable I keep hearing people say they are fine after removal of AVM with Caitlin she’s still struggling we’re from Scotland in UK x

Hi @brogan01

It’s great to hear from you, and lovely to have someone describe Scotland as bonnie! We were in Aviemore over February half term – the first time I’ve been that far north since about 1974 – and even in the pit of winter, it’s a beautiful place.

I can’t say that having numbness is a good thing. I assume you’ve discussed that with the doctors; if not, I’d say it is definitely to be looked at.

Having a bleed is definitely a devastating thing and it can do significant damage to people. I think we’ve got some people who’ve got through a bleed remarkably but for most, I think it is a similar struggle to Caitlin’s. I don’t think that three years is “out of the woods” yet and I’d say she should keep on fighting.

I remember watching a film called “My Amazing Brain” about Richard Gray, a fifty-something former soldier who had a massive stroke and it is the story of his recovery. The film showed his progress over 4 years, which was very good. One of my favourite documentaries of all time.

Sending you my very best wishes,

Richard

Sending you my very best wishes,

Richard

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Hi thank you so much for your reply I will contact the doctor and see what they say xx

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Hi,
I had a cerebellar AVM rupture and removed 2 and a half years ago, when I was 16. I experienced a little numbness after my last angiogram, however it didn’t last long. Occasionally I will experience some numbness in my hands and feet although I’m not sure if it is at all related.
I can definitely sympathize with the fatigue, and the headaches. Some days the fatigue and headaches are worse than others.
I am wishing you and Caitlin all the best.
Ella

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Hi Ella thanks so much for your advice I hope you keep well xxx

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2 posts were split to a new topic: Cerebellum AVM