How to explain someone new and unknown person about your condition in simple words?

Is AVM a Kinda Brain Tumor ? i dont know how to tell in simple words how to explain and express myself is it a brain tumour but not cancer … i know the basic concept of avm but how to tell if i have to tell someone like even your girlfriend/ boyfriend?

So, it’s definitely nothing to do with cancer, though two of the available treatments are also used for tumours.

An AVM is an incorrect connection between your arteries and your veins. Your arteries are high pressure vessels that are used to pump blood away from the heart to every part of your body. As they get further and further away from the heart, they get smaller and smaller to make sure that the blood gets to everywhere at the same pressure.

Then, blood flows through a capillary bed and it is in these capillary beds that oxygen and nutrients are exchanged to the tissues of your body.

On the outflow side of the capillary bed is a vein and each vein flows together, forming bigger and bigger veins as the blood flows like a brook, then a stream, then a river back to the heart. Your veins are all low pressure vessels: no heart pumping them back, just the constant ooze of used blood from the capillaries.

An AVM is a tangle of blood vessels where one or more of the capillaries should be. The trouble with an AVM is that it doesn’t slow down the high pressure blood like a capillary bed does and it squirts into the vein at higher pressure than the vein is designed for. An AVM is an often complex set of vessels, letting through an amount of blood. Some people have a fistula, which I believe is like a shunt, a very direct connection from artery to vein in a big flow. I had a dural AV fistula.

Anyway, the risk with these things is that the vein isn’t designed for the high pressure arterial blood and over time can stretch and eventually split, leaking high flow blood into wherever your AVM is – if into your brain, it causes a haemorrhagic stroke, which is life-threatening or disability-threatening.

The other effects that an AVM can have are that the shortcut of blood round the circuit can lead to insufficient pressure in parts of your arteries, meaning the tissue being supplied with blood doesn’t get the oxygen or nutrients it needs and can die off (this is called necrosis). Secondly, the blood that is pumping into a vein doesn’t just flow downhill towards the heart because it is coming into the vein at high pressure, so it can flow a bit both ways along the vein. Where it flows back, against the normal return route towards the heart, it can again cause a disruption to the oxygenation and nutrient delivery to other nearby tissues and possible necrosis. (The reverse flow of blood in a vein is called “reflux” or “retrograde” flow).

Brain AVMs can also simply put pressure on nearby brain tissue which affects the working of the brain and lead to migraine-like headaches or seizures or other effects.

AVMs may need surgery or embolization or radiation therapy to close off the erroneous flow, or to clip it off or cut it out so as to remove the risk of a haemorrhage. Where an AVM is not in the brain or spine, other approaches/treatments are used.

… I’m no doctor and I don’t know if this is exactly how it all works but it is how I envisage it in my own case. Hope it helps.

Richard

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Depends on who I’m talking to

This isn’t the easiest thing to explain

Most medically savvy folk, either know - or get it right away. The ones that aren’t, just have a blank stare as I once did when I was informed of what was going on in my head.

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Kudos to what’s already been said. I just might add, I tell people its like the end of a frayed rope. In my brain I had an end of a frayed rope that apparently was weakened and so it bled. It’s not a perfect example, but at least it helps someone visualize it that may not have a frame of reference for the end of an artery or vein (like me!).

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Well how I explain my AVM is by telling how a AVM works. Best way my doctors explained it to me when I was a kid was by saying how your blood vanes work sort of like traffic. He said picture your blood vanes as 8 lanes so everything is working fine till it gets to the AVM. Then it changes from 8 lanes to 2 lanes plus road construction. That then causing a traffic jam that leads to you having a stroke. As for me did a little bit more than that. It built up so much pressure it couldn’t take it and popped causing my brain to bleed. It formed several blood clots and damaged tissue in my brain. So ended up having 4 surgeries done to remove the clot and also to remove the damaged brain tissue.

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Have you heard of an AVM before? It’s like the arteries and the veins have little blood vessels connecting in the wrong places. If you want to know more, Google AVM.

:slight_smile:

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When I was told I had a DAVM I asked the doctor to write it down as I’d never heard of it. Then I researched the hell out of it. In my case the capillaries weren’t there, no nexus. I had two major arteries feeding directly into one vein. So when I describe mine I tell people it’s very rare, you’re born with it, that arteries and veins aren’t supposed to directly meet because of the pressure differences and in my case my AVM didn’t have those capillaries. That my DAVM was a sort of rare birth defect I had. I also had a hemangioma in my tonsil which is a tangle of capillaries I was also born with (removed two months after my AVM was removed) and I still have a fenestrated right posterior inferior cerebral artery I have to keep an eye on. All of those are very rare birth defects in my opinion.
Most people seem to understand then.

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I know what AVM is and I have Gamma knife 2 rounds its been 2 years now and 5 years since diagnosed coz of having seizures… I just wanna know how to tell someone in 5 minutes meeting like your future wife as in arrange marriage and covering some other stuff too and without scaring her

Not sure if this helps but here’s how i like to explain it quickly to people that don’t know:

blood normally travels through arteries, into capilaries, back through capilaries, and into veins. The AVM is when the artery and vein have a short circuit. When that happens, you get high blood flow. When your body sees high blood flow somewhere normally it sends a message to build more blood vessels (if you’ve ever gone to the gym and seen giant dudes they are causing muscles to grow by using them and then the muscles grow more blood vessels). the blood vessels built from an AVM are weak and they aren’t supposed to grow there so they grow in a silly and disorganized way and the vessels are weak. With weak vessels, they can break and if they break you bleed in your brain or wherever your AVM is.

Normally when you say bleeding in your brain people tend to put 2 and 2 together about how serious it is. I hope that helps.

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We talk about our daughters like this.

Putting all of our fingers on one hand against all of the fingers on the other. Imagine the arteries are one arm and veins the other and fingers are the capillieries. When all is right it works as it is seen and blood flows through with capillieries handling blood flow.

With AVM we twist and bunch up the hands and show a nest of fingers and wrist. And say the blood now flowed differently and pressure is put on these veins arteries and capillieries.

Love all the explanations. We find the visual helps make it easy.

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I think the job at hand isn’t to explain the technicalities of an AVM but rather, in a blossoming romantic situation, when is the right time to let on to someone you’re starting to care about rather a lot that you have some limitations or medical/AVM trouble?

I can honestly say I don’t know when is the right time to have that conversation. I don’t think “straight away” is the right answer but I’m sure most of us feel the need to be honest with anyone we’re falling in love with.

If I were to try to be encouraging to @Karan I’d say that nobody is perfect. Anyone we meet will have issues, some of which are obvious and some of which are very hidden so we shouldn’t be shy about the troubles we have. Some of the most drop-dead-gorgeous men or women have real issues (I can think of recent findings re Johnny Depp in court, for example). So I’d encourage us to feel on good ground with the world and better men or women than plenty of others, even if we have some limitations.

“Before you propose marriage” I think is my mark.

Hope this helps.

Richard

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I started talking to some girl at the pool. Turned out she was a nurse - I said I was in ICU, during COVID - she actually asked y

I don’t lay this on people much anymore

I told her, her jaw darn near dropped & she couldn’t shut up(I didn’t mind) - but, after an hour or so of her being mesmerized by me still being me - the wife wasn’t really having it. Lol

Just depends on the crowd

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(Hold up my right-hand pointer finger pointing UP) - “This is my arteries that bring blood from my heart to wherever is needed.”

(Hold up my right pointer finger pointing down) - “This is my blood vessels that point away from my heart and take blood away from my heart.”

That’s my blood flow when an AVM is operating…

The other “TJ”

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Mike,

I hear you, sometimes it’s good to have someone to talk to/educate, other times, it’s like, “Leave me alone!”

TJ

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I tell people it’s like a braided rope. One of my braids in my brain started to come undone and ruptured. Not sure if that’s accurate but it gives the general idea. Blessings as you continue!

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I generally say its like an aneurysm and tell them it is like a high pressure hose being connected to a low pressure hose and at some point may explode and bleed… God bless!

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