Frustration with trying to explain AVM's to others

I guess this isn’t a particular question…but is anybody else tired of trying to explain AVM’s to others?
Also a lot of people seem to think that I am now completely cured since I had the cyberknife. I try to explain that it takes awhile to make sure the AVM has shrunk and that it might not but most people don’t seem to want to hear that.

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I just usually punt and say it’s a brain tumor. It’s not but it sounds serious enough for people to start to understand.

I found myself trying (even in medical terms) what an AVM is and what it means to have one. i think because it is not well known people just can’t grasp what it is like say cancer. It got very frustrating for me and I found it was only hurting me so I gave up. Now when someone ask I just say it is something that is hard to explain but believe me you don’t what it. Even my own family who has lived with me (I was diagnosed at eleven) still don’t understand. As soon as my first procedure was done they thought I was so much better and here it is four years later and still not obilerated. I think Ben has a good solution by saying it is a brain tumor. Everyone can usually grasp what it is and what it means.

I try to enplane that it is where there are usually capillary to step down pressure, I had a spot that did not have theme. Here is some finger work… trying to show them what it looks like… which is funny because I only have use of one hand…my left hand… wow!

I figure if I put enough energy into it… most will get it… those who don’t… well to hell with them.

We struggled with this also for a long time. What we usually ended up with was something like “AVM is a vascular problem where weak-walled blood vessels swell, causing seizures (for us). They have a risk of rupturing, which is very bad. Typically, you have them from birth; sometimes they show up, sometimes not.” (And since people knew we had kids: “The kind of AVM she has is not hereditary.”

After Proton Beam Radiation, we’d say “The AVM was targeted with radiation similar to how depth charges work–going off at a prescribed depth in the brain to seal off these excess vessels and/or strengthen them. It will be some time before we know how effective the treatment was.”

For the embolizations, we’d say “An embolization is similar to a heart cath, only they go into your brain searching for these bad vessels. Once they find a good target area, they inflate a small balloon and perform a neuro exam on you. If you don’t lose critical function, they deflate the balloon and insert a super glue like substance that reacts with blood to seal off the bad vessels.”

It’s not all bad–once in awhile you will be describing the AVM, when someone asks “Does she have an AVM?”–they obviously know someone who has one or are in the medical field.

Hope this helps.

It is a hard thing to get people to know about. We (as in my whole family and most friends) had never heard of an AVM until Ryan had his bleed. Even in the hospital I knew it was due to some “bad vessels” but it wasn’t until the surgeon came to see me did I get a really good explanation. The three letters
AVM are a mystery to most people. I find myself explaining it as something similar as a bad stroke then they go “Oh okay”

i don’t even bother now as can’t be bothered hearing but you look fine so you mut be better now. I just nod my head nd agree with them!

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I think a lot of it is denial in people. They just don’t want to understand what a horrific problem this is as it is somone they care about and its easier to deny rather than understand. Even my husband had made comments about that “pinched nerve” in my back. HUH?? NO… its not a pinched nerve its way worse than that. We are still in the diagnosis stage and he hasnt been with me for one procedure yet or dr appt so once that happens he may get it better. Don’t even get me started on not being there for me…

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It one of those things that is really difficult. Do you say exactly what it is and watch as the eyes glaze over, or do you just try and get around the symptoms?

I have found a way that explains it to my co-workers is as a plumbing problem!!! Strangely, people seem to understand that!

Hey, but you look ok, so it can’t be that bad! (I am sick of hearing this!!)

i jesus yes, it’s all new to them and they say, “is it this, or oh, u had a …” don’t feel the need to explain, just let it go. those who really want to know will google it and and find out for themselves … ps: u should of seen what it was like trying to explain it 25 years ago!

Yes so far i have been getting the confuzzled face every time. I’ll get better at explaining it in time!

Sometimes when I know I’m going to see someone who will be interested in my wellbeing or my progress, I’ll take a copy of a brain scan with me. I find it easier to explain with the help of an illustration.
Living in a country that doesn’t communicate in either this or my own language (English or German) it can be a bit difficult to find the right words, like ‘vaatkluwe’ (tangle of bloodvessels - Gefässknäuel?), arterioveneuze malformatie (art-tay-rio-vay-neu-sah mal-four-mart-see) or embolisatie (em-bow-lee-saart-see)
Then I’m like: Sorry folks I’m breaking my tongue over all these big words, here’s a picture of my head and an explanation I found on the internet!

I am going to see my family (a very large extended family) the weekend after Christmas and I’m seriously thinking of printing out a handout that explains the basics about AVMs!

That’s a great idea, it’ll help them understand what’s going on.
When I told my parents a year ago I didn’t have copies of my own scans yet but I pointed them to some informative sites, and also invited my parents, my brother and my friend Stephanie to follow my story right here.
I’m way too lazy to write everything down multiple times for everyone who wants to know, so I just give them the links.

Dianne Tinman said:

I am going to see my family (a very large extended family) the weekend after Christmas and I’m seriously thinking of printing out a handout that explains the basics about AVMs!

I take Chinese lessons for three hours every morning and it requires sitting at a desk during the whole time. My AVM is in my right calf muscle and I must keep it elevated when sitting for more than a few minutes or it starts to swell and cause pain… so in class, i need two chairs. the classes are small, about 4 to 7 students but we often get new students coming to try out the class. i try to show up for class early so i can claim my spot… otherwise i have to ask others to put their bag on the floor and give up their extra chair, and i feel a little uncomfortable burdening people, but my husband encourages me not to cower and take care of what i need to take care of. my old classmates all know about my condition and they willingly give up an extra chair, but when there’s a new student, new semester or a substitute teacher, I often have to explain why I need the chair. i try to just sum it up briefly by saying i have a circulation problem in my calf and need to keep it elevated. about a third of the time someone will ask me in greater detail about my problem (which i like… instead of them just wondering why i’m trying to make a fashion statement by wearing one sock!), and then i switch to English to tell them about it. It’ll be great if one day i could explain it in Chinese. :> I’ll have to get my doctor to help me out on that one. I live in Taiwan and often when I’m outside wearing shorts or a dress/skirt people just STARE at my leg… which took some getting used to.

I get ,You look good and I’m glad your better or since you take medicne your ok. And some say (WHAT IS IT YOU HAVE AGAIN )

It’s really frustrating for me because everyone looks at Nico and thinks he is completely healed. He is running around , laughing and tackling his brother. He looks perfectly normal! Unless he starts to speak then they know he has a speech problem. Also people act shocked when I tell them its not all over. Then don’t seem to understand that its a ongoing process.

I get people saying to me (alot) “OH, I knew someone who had that and they’re fine now.” ?! Gosh, for a rare condition, I’m finding it very common! NOT!
Or they just want me to say my son is all “fine” now…which I refuse to say. I find myself not wanting to talk about it with people because it is impossible to explain. My family is great. They have worked very hard to understand it. But with others, it is very frustrating and super hurtful at times. And as Ben said, it would almost be easier to call it a brain tumour because people “get” brain tumours.

OMG …all these comments are SO TRUE! Jaclyn was just sitting here reading this blog post and she was going off how her trying to explain it to all her friends and teachers at school is sooo frustrating to her!That’s why this SITE is sooo awesome! We ALL can relate! Thanks again BEN …our HERO!

I just wanted to say that I have found that the easiest way for me to explain it to people is to say, “Have you ever heard of an aneurysm? Well, an AVM is the MOTHER of all aneurysm’s!”
(They usually get the point…HA!)