Facial AVM, first time back since 2015 no options left

Symptoms & Treatment
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Where do i start all, hope your all living life the best you can.

My AVM is a facial AVM, on my my lip. Which became really rather large, ops followed well more of a debulk, using Onyx etc. But problems became apparent thereafter with the treatment given, to be honest was totally terrible to say the least.

Anyway we are now into 2022 obviously, and i seem to be having issues again. Last review if you could call it that was basically we cant help, nothing we can do, only help that will be offered would be life preservasation. That was a few years ago and i just got on with it, but now i know this is getting really bad.

I have come to the realisation that this is going to catch me sooner rather than later and have made my peace with this i suppose. But my worry is my family as they like everyone else in this situ depend on me deeply. My hope is kinda gone.

Am gona push my doc for a referal to see where i am at, i know they cant say exactly and i know they wont help me, but i wana know, so i can help my family for as long as possible finacially while i can still work.

My wife and i have very different opinions on this, she lives life for the day, where as i like to prepare for anything in general. My wifes opinion is we could all die or be struck down with illness or even knocked over anytime, which is true.

But my opinion is i would have liked to mitigate risks, and that i stand firmly in the middle of the road just waiting to be struck ( ticking timebomb ) because of this. Dont get me wrong i really dont dwell but i also aint gona deny.

Thought of a go fund, but in all seriousness, it just aint gona happen.

Anyway hope your all good considering, can anyone tell me how Louise B is doing or if she is still on here.

I hope you guys are all good.

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My wife really is playing this down bless her.

But i know its catching up, and as am sure most would agree when you know you know…

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Its been a while for sure, I haven’t been here 6 year yet, this summer. Sounds like you have a ying and yang thing with your wife, similar to me! The secret is trying to balance it all. We’re the opposite, I’m the right now and she’s the let’s plan this out rather than charging madly off in all directions!

Im a big believer in second opinions, if you’re not happy with one get a second. They may be similar or not. We see second opinions vastly different frequently for sure, sometimes the same, but sometimes quite different. Never hurts to ask the question, the wondering is what gets to me. Take Care, John

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Hey Dave,

And so am I. My situation has been neurosurgical. The initial surgeon had a plan and I followed said plan, only the plan didn’t work as planned. Since then I’ve required multiple neurosurgeries and prior to each follow up operation I’ve gone and gotten a 2nd opinion. I want to know, what are my options. Are there any other options? For one of the surgeries I didn’t just get a 2nd opinion, I got a 3rd and a 4th. Any one of these Dr’s can have a different opinion, a different view and another option for me to investigate.

Being that I’m in Australia, I’m a little unsure how the UK system works. Would it be possible for you to get a teleconsult (online) with a specialist in a major centre like London? You maybe be able to find a specific facial avm specialist. I say this because I had to go interstate to get a truly independent opinion. The dr’s in my state all referred back to the original surgeons opinion. Once you have the information you can make a more informed decision.

BIG +1 for that one. What’s the worst they can say? ‘No’

Merl from the Modsupport Team

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Thanks for the replies.

I am kinda feeling my situ is hopeless in all honesty.

I have had my AVM since mabye 24-25, i am now 51 so done not bad.

But back in 2014ish i had no option but to have surgery, i had surgery way back maybe when i was 27 and they used microspheres, but they admitted lately it hadnt worked and possibily was done incorrectly. It had grown much much larger since.

My last surgery was horrific, i had Onyx pumped into me via the femoral all the way up to my face. But they had put way way too much in and i had to endure the extreme pain of it bursting and forcing its way through my face. Sent home countless times and told not to worry as this part of my face/tissue would die and they may amputate.

So much came out it left the part they tried to stem blood flow in actually doing the opposite and i started seriously bleeding. I was rushed down to surgery after saying goodbye to my wife which i was advised to do.

Anyway after i came round luckily, all the stitches burst and i was again exposed and basically thrown out of the hospital, left to deal with it. I had a terrible time, unable to sleep for fear of bleeding from an open wound, countless visits to A+E, i couldnt go throught that again.

So here i am again, in pain from now a different location which is due to the surgery i had and has forced this further down closer to my left side chin and possible jugular.

Not good i know, the pain i feel is the artery etc expanding past its normal point, kidna know where this is gona go, as there are no options in my country. Already been told they wont do anything other than life preservation, which i really dont know how i feel about.

To be left in a lesser and lesser quality of life situ just aint me, i watched the pain my wife and now grown kids went through and dont wana put them through this again.

I kinda feel my mind isnt as quick anymore but that could just be age lol.
But i doubt it, probably probs with bloodflow i guess.
I think for people who share this problem an anti inflammatory would would be a help, but for me it thins my blood and then i have bleeds from my nose and shockingly my gums.

Am continuing to work because i really dont have any other option but thats life i suppose.

Just feel like a ticking time bomb.

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@Dave4

You’re in a tough, tough situation. I’ve nothing to share for my experience because you’re in a place I’ve not had to reach but it’s good to hear your thoughts. All of the things you’re saying about not wanting to put your family through more trauma is the way we all feel about stuff like this. It reflects on your personality in a good way. It’s really nice to see and I think we identify with you in that really well.

There are others in a similarly difficult situation and it is good to be able to talk to each other. I’m sure there are two others in about as difficult a place. I’m going to have to go and look up who I’m thinking of because they’re not folk I know very well.

I know what you mean about getting to 50. I’m lucky because my dural arteriovenous fistula made itself known when I was about 50, so I was shocked at the possibilities, completely shocked, having honestly taken my health for granted for all of that time but I did resign myself / congratulate myself on making it to 50. If bad stuff happened, I had made it to 50 and that’s not to grumble at when we see how young some people are when they discover very difficult health situations.

But I don’t know how hard it is to look at a deteriorating health position like you and feel there’s not so much road left. That’s as tough as it gets. And from here, I’d say you’re carrying it with aplomb, so bl**dy well done mate.

Virtual hug or handshake (whichever you’re most comfortable with) from the depths of Leicestershire.

Best wishes,

Richard

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Cheers buddy means alot.

I have usually looked after myself well, always been very fit even now.

Just up until last year I was still bodybuilding like a champ, up until I damaged my 50 year old shoulder lol. This put a stop to things so I am at a loss with my main hobby gone. Maybe it was a little stupid of me to still be pushing heavy weights at my age. Lost all my weight but hey ho.

Prob need surgery on the shoulder, but I think what’s the point, just being real.

Gona enjoy the rest of my life, no matter what or how long, because no one can seem to tell me, and what’s the point living in fear.

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