AVM re-occurrence

Hello everyone!

Just looking to see if anyone else has had their AVM return.
So basically my sister was diagnosed with a AVM when she was 13 (she is now 28), and was treated with 2 rounds of gamma knife, which eventually cleared the AVM but then left a fistula, which then cleared of its own accord? and as of last year was signed off from neurology due to her past 4 year scans being clear, although they only ever need a normal MRI, rather than a angiogram.
However the past week she has now been complaining of a ‘beating’ sound in her left ear and its pretty much constant throughout the day and keeping her up at night, and i know this symptoms often leads to people first discovering they have an AVM.
So i was wondering if anyone has had their AVM come back after being given the all clear?

Thanks!

Pop

I’m pretty sure if the thing isn’t 101% closed off it can push high pressure blood into low pressure vessels and start creating a new channel, you might say. So definitely possible to have a recurrence, even from a small initial leak.

Equally I am sure that the beating sound is what is called pulsatile tinnitus, which is how I first discovered my AVM.

Personally, I had an embolisation last April, was signed off 100% fixed in May based on an angiogram, and I’ve currently got fullness of my left ear, straight tinnitus, a different-sounding pulse in my ear from before and I’m heading to see the doc again in March.

If the pulsatile tinnitus is loud enough to hear through the day, my opinion is definitely to get it followed up.

It is really disappointing to be signed off but still suspect that there is something not right. I’ll be interested to know how she gets on. I’m hoping my doc doesn’t give me some prattle and try to tell me it’s nothing. I really don’t think I’ll be believing him.

Hope she gets a supportive ear,

Richard

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Thanks for your reply!,
She has now got an appointment with her neurologist in March, and he is arranging for her to have a scan, so we shall what happens then!

Thanks
Pop

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Our neurosurgeon told us that if you bleed and you are young there is a higher chance, even if cured, that the AVM can return. Glad your daughter is scheduled for a scan. My daughter is getting a 5 year post obliteration scan in May. Best wishes.

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Hi Pop. My understanding is that same as Richard’s, Unless an AVM is removed entirely it is able to recruit more blood vessels and ‘regrow’ itself. I think it is very likely that this is what has happened to your sister I’m afraid. However she needs to get an MRI to make sure.

Lulu

Hi Pop, Ive been told that there is a high risk of reoccurrence if the AVM has not been removed completely in all ages and in sometimes children as the brain is still developing… I was 30 at the time and my neurosurgeon stated I was young, but not young enough that she was concerned about it coming back… God bless!

My daughter was 10 when her AVM ruptured in Jan 17. She had an angiogram and subsequent embolization 6 weeks later. Her surgeons felt the AVM was then gone. She had an MRI in May that also showed no residual. Her surgeon said she would need a one year follow up angiogram though as it’s considered the gold standard. She had the angiogram this past Friday. We were honestly expecting it just to be a double check but they found a small residual too hard to get to for embolization. We discuss options this Friday. We thought this part of the nightmare was over but I guess not.

Allie

Sorry to hear that. These AVM things are rotters, hence my 101% figure! I guess when the vessels get to be really tiny, you can’t push a tube through them to inject the glue and that’s where radiotherapy might have a role.

Very best wishes on Friday!

Richard