Does anyone know anything about arteriovenous malformations?

[CPL593H]

Hi
I've always had problematic eyes (very shortsighted for 50+ years) but all was good after bilateral cataract surgery at 54, approx 5 years ago. Started to develop posterior capsular opacification last year, on waiting list for YAG laser, no problem as could manage.

About 5 weeks ago I had a "funny turn", very dizzy and since then have had what I now know is called kaleidoscopic vision in the right half of my right eye, it is as if what I imagine a 90s rave would have been like has taken up residence in my vision. I saw my optometrist next day who checked retinas, all OK and thought it could be an optical migraine, but as it didn't shift ended up seeing leading ophthalmology consultant this week ( I've seen him before re cataracts, he is great)

He said not eye related and either small CVA or AVM, kaleidoscopic stuff very rare and this is his experience of the cause. Awaiting brain MRI now. I have high BP and am on 2.5 mg Ramipril daily since last September, also recent diagnosis of aortic valve stenosis. Otherwise OK!

I'm sole carer for a very poorly husband and am just worried about what it might mean if it is AVM. Don't want to put the cart before the horse but hard not too.

Thanks for any responses.

*to. Dur.

Yes, my daughter had a previously unknown AVM rupture. Ask away!

@hennipenni thank you so much for replying (and I hope your daughter is fine now)

Main question is what if any surgical intervention there was afterwards and what the recovery time was like. I'm trying not to consult Dr Google

I told the consultant that I actually did have a head MRI 20 odd years ago (recurrent Bells Palsy) and it didn't show anything and he said they often don't and this one might not either, even if there is a problem, which is worrying me a bit!

Hi, sorry you are going through this but please avoid Dr Google!

The gold standard investigation to confirm AVMs is via an angiogram which will show any abnormalities that an MRI won’t.

If you are in FB there’s some good pages out there, primarily AVM friends UK, the members on there are very supportive and knowledgeable about this condition.

There are 4 treatment options normally, leave alone, embolisation and glueing, surgical removal and Gamma knife surgery (this isn’t surgery but a treatment which involves gamma rays being targeted at the AVM- this however can take up to 4 years to work. Treatment depends very much on where the AVM is situated.

The good thing is that if you do have an AVM, it’s been caught before it ruptures.

As the surgery recovery it depends on each individual case.

My daughters AVM wasn’t removed surgically due to the location and the fact that it was very fragile just after it ruptured. She did have surgery within 3 hours of the rupture to remove the blood and help reduce any further pressure and went on to have Gamma Knife surgery 4 months later. She has since been declared AVM free thankfully.

If you want to know more about the effects of the rupture please feel free to message me, I hope this hasn’t worried you too much but there’s no sugar coating this one.

One piece of advise though (well, two!) keep your blood pressure and stress levels low and if you experience a thunder clap headache please get it checked out at Hospital(my daughter likened her rupture to feeling like someone had hit her brain hard with an ice pick)

Good luck and feel free to ask anything you want

@hennipenni I'm going to reread and digest what you've said but wanted to thank you for your reply. The ophthalmologist this week mentioned angiography; I had severe migraines as a small child and no scans (because 1960s) and he thought it should have been done then. I'm really good at assimilating information around my husbands health but less so my own on this occasion, so don't think I took everything in.

Although the vision thing is not great and may or may not go in time, I think I've potentially been very lucky to get a "warning". I will definitely get to hospital soonest if any concern re headache.

Thank you so much again for sharing this, it has really helped and I feel more au fait (and will definitely stay away from Doc Google, because stress!)