Best way to raise awareness see

General
#1

Hey guys,

Think i am going to go down a road i really didnt want to.

I am going to try publically raising some awareness regarding AVMs including facial.

Anyone give some suggestions how to get my story national etc, i am kinda at a stage where if i do nothing my own situation is going to be fatal, or at the very least homebound with a heavily amputated face. I have been told they can do nothng else for me here and that was a few years ago. My situation has escalated and i know am getting close to a point that this may be the case. If they have to go further and further down they will be into my jugular and thats game over.

Anyone have any suggestions please DM/message me.

I aint going out without trying and i wana try before all my hope is totally gone.

Thanks

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#2

What are you thinking? Talking to newspapers or writing a book? What sort of thing?

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#3

I really aint sure in all fairness.

I really am sick and tired of explaining to doctors, cts and many many other what it is.

Also i wana give myself a chance even though i have been told i have none. In my country my cards are marked i have no hope, theres nothing they can do. but i have been speaking with Louise tonight and am sure she wont mind me saying she is in a much much better place, which does give me hope but not in this country. If i dont get treatment soon i know it aint going to go well. I have a high flow in my face, and getting bigger and sorer by the day.

I have also spoken personally with DR Suen in the states, but am unsure if he is still doing surgeries.

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#4

USA seems to be the only place of hope am afraid.

I also think it really is time AVMs were taken to a level that people should, need and want to speak about them.

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#5

I also feel many people who suffer from facial AVMs are treated or are assumed to have a facial disfigurement which it can be, but its way way more than that. Many simply do not understand nor do they think this could be them as the person they are looking at they assume was born like this.

It really is quite appalling, because not only is the person dealing with this obvious affliction ( if it is ) on their face, they are living with a potenially deadly condition.

Like many i had to work with a really obvious facial AVM which i was asked about constantly, it really can play on the metal side, not to mention the actual pain, and worry of bleeding out, which in my case is extremely likely. Came close already twice.

I suppose facial AVMs in the world we live in today can be very very difficult to live with, so many worry about how they look and how they fit in. But the only up side i can see for facials is that it then becomes obvious and can maybe be dealt with sooner, where if in another location internally cant be noticed quite so quicky.

Hope that makes sense.

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#6

Makes a lot of sense.

I went to bed last night without sharing my last thought with you, which was to focus on Facial AVMs. You and Louise are the only people I can bring to mind with a similar kind of facial AVM (and by my reckoning) basically the same trouble. And that does leave you in a very small minority. And being in such a small minority, with poor knowledge or expertise in the doctors, there’s definitely something worth doing in that space.

We do have a small but perfectly formed community of @Facial patients here. I would very much hope that that group will get real value from your experience, be able to offer similar troubles and (I think) tell you that Dr Suen is still operating. It feels like a couple of years since I’ve heard his name but we’ve had covid for a couple of years and a much reduced activity in surgery generally.

I might move one or two of your posts to the Facial category: it’s good for things Facial not to get lost in the general melee but to be useful for everyone with similar troubles to be able to find stories that can help them.

I often think that even though we may be few in number or very weak, if we leave upon each other, like a house of cards, we can be something bigger. But it is built out of leaning on one another.

Very best wishes,

Richard

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#7

And the trouble with that is the cost. I’ve just had a random thought, driven by the cost problem, as to whether equity release from your house might be an option, if you’ve been in it for a long time. Not worth me keeping such ideas to myself because I’ll forget about them… so sharing it while I think.

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#8

Richard and friends, Let me bounce an idea off anyone who might be interested…

Everyone I talk to and tell them about my story says something like, "that’s fascinating. Let me know when your book is printed, I want to buy a copy (even though we hadn’t talked about it from the concept of writing a book about my 43 years with AVMs and all that involves.)

But this has me thinking… What if we took a different approach? What if we set a goal of a large number of stories of our people that would be eventually be written and combined into one book. The stories would be the written word of our people so that their stories would have an avenue to be able to be get their stories out to their people, their friends, their family and more and also have a way to spread the news of what is happening to them that they could then share with their people. Obviously the goal is to share a larger number of stories with a larger number of people. And also get greater support for the medical people who are working to provide healing for those of us who have an AVM or who have a family member with one.

The details have to be worked out yet but this could be a good fundraiser individiuallhy and as a group. This is essentiallhy what I did when I worked for the orphanage before we adopted our two youngest kids. We raised almost $1,000,000 in just over 10 months.

The possibility exists to make a big difference if we organize and follow through well and I look forward to the possibility,

TJ

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#9

Hi, yeah that defo sounds like a fantastic idea.

Promotion is defo also a key factor, such as the usual Twitter, MSM, and various outlets.

All other illnesses are widely promoted with regards to awareness but sadly ours just isn’t. I feel this is where the main attention needs to be. I have never seen any hospital flyers, posters or support groups advertised, nor do I hear anyone really talking of it.

It saddens me to say we could have the world’s greatest content and stories but without promotion and awareness on a regular basis people just won’t be interested not bother.

For me awareness is brought about by constant reminders and promotion, this must start from hospitals, med centres online platforms etc, it would need constant content and time from people generous enough to donate time.

I have seen over the years forums dying off and more social media platforms having the ability to do just that. Forums are great for support and info for those suffering but I wouldn’t think Joe Public would just stumble upon these things just out of interest with the possibility of themselves at some point in life getting one.

Who knows but I am kinda feeling I would like to jump on and give the time I have spare.

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#10

I mean, I see this forum as a space where I’m leaving my mark for anyone who needs it now, anyone who could benefit from it in future and hopefully that my son will look at and understand the kind of person I was. Maybe show his kids if I never meet them: “This was what your grandad was like…” because what I share with you guys is what I’m like. I’m not pretending who I am here.

So the trick, other than the random collection of stories and snippets that we have here, organised mostly by time, is collecting those stories and turning them into something better structured, more useful than the timewise expression of thought.

If anyone can do that, it would be magic.

In terms of anything towards fundraising, you’d need to get Ben on board as it could be a diversion from the core aims of his communities; or he could see it as a useful development of his original idea.

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#11

I just saw your post and I have had the same experiences my entire life. I am currently 66 years old, retired Army Infantry Soldier. Have facial AVM; I had major bleed at age 11 and major life saving surgery at age 15, a total resection of my right jaw and AVM. Underwent another AVM surgery on my lower lip at 18. Had several plastic surgeries and thought I was cured. Upon retirement from Army learned it had regenerated and now affects both right and left side of my face. Have undergone several embolizations since then. I still run into many doctors who know very little to nothing about AVMs and they marvel at me being alive. Anyway, like your ideas!

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#12

Hi Steve, am pretty sure I had read your story years ago.

Yeah, I do feel all these procedures may or may not be necessary, but I suppose if it means living a little longer with some sort of normality then so be it. But it’s when things start changing and it’s either keep on going day by day with the possibility of not making it or taking the chance to either cure ( big if ) or prolong life.

In my case I didn’t really have much option last time, it’s was surgery or die.

This time I feel I am a little more inclined to say no, but of course that could change, I really don’t know but if last time was anything to go by then I would tend to say defo not. I know for fact they would end up amputating, they had mentioned it before.

I am 52 this year and feel that ain’t a bad innings, if I get to say 60-65 then I will think I had done well.

I also now have other issues because stupidly I did bodybuilding, and ended up injuring my shoulders and also arm tendons. But that’s not a huge prob just painful.

Oh well what can we do in all honestly.

I will never forget something my brother said to me whilst in my darkest times, undergoing surgery which didn’t go well.

As we all knew this wasn’t looking good at all he said, if it were him he would rather go while under anesthetic than awake, and I tend to agree.

Just seemed to resonate with me, but my only issue is who gets left behind and the pain it must cause.

But the biggest issue some of us face is being within the hands of professionals that don’t know of it, or how to deal with it, that’s the thing that really worries me, you feel you surely are in the best place but as I have seen time and time again with our condition that just isn’t the case.

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#13

I think that’s an awesome idea. Maybe it would help our families, if they would read it, to see what we are talking about better. I like that idea…alot

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#14

Don’t know about you guys but I do think awareness also needs raised hugely within the general medical practices etc. Today I made a call to my own, and nothing has changed. Still very much a one sided convo. I asked for yet another referral just to see where I stand with my expectations VS what’s actually happening.

Ain’t sure if any of you ever have follow ups of a periodical nature, personally after my surgery and healing was done pretty much nothing.

I had to push and push for a scan to see how this was progressing one consultation thereafter then nothing, pretty much left to it but still dealing with the issues regarding the avm/s.

The part that really bothers me, is when you reach a certain age the med profession are quite aggressive pushing certain health checks but we are left hung out to dry knowing we have issues, well in my case that’s the way it’s been.

So now I jump on the scratch head merry-go-round again, referall, possible scan then their final input, which I already kinda know, but on this occasion i am asking/demanding a second opinion but of course who else is going to give one when there are no others in my country, really is horrendous.

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#15

Don’t know if this is a good analogy, but it feels like standing waiting in the middle of the road, waiting to be hurt, then when the paramedics appear after your eventually hurt rushing you to hospital and then tell you they don’t know what to do. Tell you just to home hoping for the best.

Kinda sums it up in my own eyes.

I have been told so many times now, to operate at this stage would be like opening a can of worms. Of course they are not going to do that, and tend to just leave you to get on with it, until an issue that means its life threatening happens, and only then would they even consider doing anything, maybe they wouldn’t who knows. But this has to change so that in the future others can be helped in a more proactive manner with a lot more expertise. It really just isn’t good enough.

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#16

Hi Dave. So sorry to hear your story. I’m not sure where you are in Australia, I’m in Tassie. We have a very good neurosurgeon here, Nova Thani. He trained in Toronto and has experience with AVM’s. But International 2nd opinion is a good idea. Just because larger countries like the USA or UK have more cases, hence more experience (and way better technology/methods). It is certainly a steep learning curve. Never give up.

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#17

Having just gone through craniotomy/AVM surgery in the USA. I can highly recommend it. It is also NOT as expensive as the quote. My son’s surgery was quoted as $150-300K, it came in at $76,000 (he had insurance). His out of pocket was quoted at $8,000 which is still far less than my breast surgery in Australia. It actually cost $1200. The difference becomes the loss the hospital can write off….so they are not a profit based business and can operate at a loss for tax reasons. Don’t get me wrong….it can break the bank. But the service is night and day to Australian hospitals (Tassie has pretty dated buildings and truly awful food and that is the private ones). But we have GREAT surgeons.

#18

Sorry Dick…was trying to support your view but send to Dave. Still can’t work it out. :rofl:

#19

If you use the curvy grey arrow next to a post, you reply to that person.

If you use the blue Reply button at the bottom, you reply to the latest.

Oh, and both of us are in the UK! :rofl:. To see someone’s location etc, click on their icon/avatar.

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#20

Hi and thanks for the reply.

Am afraid I am the UK, which has little to no professionals.

The ones that do operate are usually general surgeons, my last was a plastic surgeon, but radiology were great.

Radiology knew exactly what it’s was and had to embolise before surgery, but the surgeon didn’t specialise within this field am afraid.

I will never forget some of the thing I was told before and after.

After I lucky came out of surgery ( I was told I prob wouldn’t ) I was Told I must leave within hours ( bed space ).

Within a few hours all the stitches burst and I was now nursing not only a 1.5-2.0cm open wound but also the exposed area they had operated on. I then started to bleed profusely and was rushed to A+E but no one knew what they were dealing with. I was again sent back up to plastics and they told me to go home, unbelievably.

I then had a huge fight on my hands as they would do nothing and I was continuously taken back and forth to A+E.

I was never restitched nor did I receive and further treatment apart from a scan and so it finally healed on its own which I was amazed at.

But the surgeons were very dismissive of me and even refused to see me.

Luckily the mouth area is one of the quickest healing parts of the body for obvious reasons but didn’t stop me loosing a large amount of body weight.

To go to another country to have this dealt with seems like a long shot in all honesty. Considering the price I doubt that will be an option for me but am gona try.

I have been told the surgeon that operated on me has since left so this referral is gona be interesting, but sadly a few months off due to their timescales.

Really is rather horrendous here.

If it were cancer or heart probs I dare say they would be straight on it but it isn’t and so the merry-go-round ensues.