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AVM Survivors Network

Davf embo in 2weeks

#1

Hi I’ve posted here before but don’t come on much. Was diagnosed with grade 1 davf of external carotid artery August last year. Going in for embolisation on 29th april which is my choice and only to help with pulsatile tinnitus symptoms .

Any advice ? Consultant did state might take 2 or 3 procedures and that first one might not get much done as might be more checking my vessels out or something as when had angiogram was just taking pictures and not putting anything near the fistula really.

Regards
CHRIS

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#2

Hey, Chris,

I think an embo is basically an angiogram with glue, so not v different from before. Main thing I feel is to keep as well hydrated beforehand as practical. You’ll be on starvation from some point pre op but good to be nicely hydrated the day before.

Other than that, just chill out. I was much more bothered about it before than after. Sure, I had a ton of glue and a fairly sore head but it was perfectly gettable-throughable and I expect you’re up for less glue than me. My IR suggested he might need two goes at it but he was proud to say he’d fixed me in one sitting.

Let us know when you go in. We can cheer you on from afar. Sometimes it helps.

All the best

Richard

#3

@irelandchris1

Good luck. They can use either glue, onyx or titanium coils as part of the embolism.
I always bring some chapped stick when I am in the hospital and now my iPad with movies and book.
My skin and hair always freak out after I am allergic to iodine which is used so probably just me but I always loose a bit of hair and my eczema gets bad .
Let us know how it goes
Hugs
Angela

#4

Thanks Richard and Angela , my only worry is that I get hopes up then ends up cancelled . Consultant stressed to me that because need bed in HDU for the night there needs to be bed available so fingers crossed not many last min emergencies but understandable if happens I suppose.

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#5

That’s a really good point, actually. You’re definitely elective, so bottom of the list. That is an extra challenge.

So… take heart. It’s an eminently gettable-throughable thing and you just may need to be patient if it gets close, then suddenly gets put off a number of weeks. I’d hope you don’t get put off and put off and put off: that would be the worst.

My current theory is that it takes 2 weeks to schedule a patient into surgery, now that you’re inside that 2 week window, it should only be the real emergencies that could push you out the way.

When I was trying to chase down my appointment, I tried also to tell myself that in no way did I want to jump the queue in front of anyone who needs it more than me. That if I did get put off, it was because the other person was in a much worse condition than me and I was merely doing my civic duty by being patient.

I’ll cross fingers and toes and will you to get there. What’s your date?

Richard

#6

It’s on Monday (29th) , hospital am going to has a lot of air ambulance patients etc so fingers crossed .

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#7

Yeah… hoping it comes through for you! :crossed_fingers:

#8

So an update! The embolisation went ahead and according to consultant was a success. Was only meant to be in theatre 2hours roughly but from anesthetic and procedure ended up about 6 but he managed to occlude the whole fistula.

As for pulsatile tinnitus its made a huge improvement , feels like it’s gone but get occassional rumble. They went in both sides of groin and arterial side bleed in recovery as pretty bruised but overall I feel ok.

Main thing is am glad I got it done :slight_smile:

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#9

Fantastic!

Can I tell you, I think it takes a lot more getting used to post operation than you’d think, so be sensible for the next month or two minimum and actually, I think you might spend the next year before it all feels settled to how it should.

Very best wishes!

Richard

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#10

Thanks Richard

Will update after angiogram in 6 months .

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