Frustration with trying to explain AVM's to others

General
41

I got so tired of explaining my AVM to people at work. I just told them I was going psycho. They left me alone after that. lol

42

Yes! - Mine was removed in 1989 and to this day I try to avoid the topic because it is such a lengthy story. But when I do explain it (in simple and easy to understand terms) upon finishing my 10 minute explanation they most often respond “so you had brain cancer?” At that point I usually say “something similar, it would be difficult to understand unless you were a doctor.”

When explaining it to other men I explain that an aneurysm is similar to a radiator hose with a weak spot in it, a bubble, that is ready to burst. Then add that what I had was a series of similarly weak spots in the arterial walls of my brain. They comprehend that.

And I avoid using the term AVM but rather explain it as a “mass of aneurysms” to avoid additional confusion.

43

I would invite an opportunity to educate others on the topic since it is not widely understood. How about not being irritated with people, but be thankful you have people who care enough to ask. Don’t look at it as “poor me”, but try to handle the questions and any doubts people might have with grace and by showing how strong you can be even with a serious medical condition such as an AVM. Good Luck!

44

hi dianne, i’m new to this site, but i just tell people that i’ve had an avm like a stroke…and they seem to get it, kind of. i hear ya on the frustration thing. i don’t know if anyone without an avm will understand…i just try repeating, “yes, i can do it, but it’s going to take me longer to do it.”

45

Wow thanks for the condescending advice.
Caroline Niblock said:

I would invite an opportunity to educate others on the topic since it is not widely understood. How about not being irritated with people, but be thankful you have people who care enough to ask. Don’t look at it as “poor me”, but try to handle the questions and any doubts people might have with grace and by showing how strong you can be even with a serious medical condition such as an AVM. Good Luck!

46

I just tell them the best way to look at it is like hooking a garden hose to a fire hydrant. Only it’s an artery hooked directly to a vein

47

I just tell them its like a weed and if mowing (embolization) it doesn’t work . Then they may try week killer (gamma knife ) If that doesn’t work then dig it out by the roots (open surgery ) And if they still don’t under stand I tell to come to this site

48

Thanks for this topic. I’m really sick of people telling me my kids look fine. I have lost 2 friends over this, including my best friend. While my 6 year old was in the hospital undergoing test after painful test her husband told me I needed to go home for awhile because I was getting too worked up (leave a scared 6 yr old baby without her mom while she lays in a hospital bed? I don’t think so). When I tried to talk to them about how I was feeling he told me I was making a big deal about it, and how dare I try and explain to him how serious it was when he had seen people who were “really dying”. I will spare you all the rest of his diatribe but it got worse. When she agreed with and supported his comments our friendship ended.
To this day teachers and others, including family, give me looks when I say she can’t do certain things or that she’s not “cured” 4 weeks after her gamma knife.
Even her neurologist says she’s lucky to have an avm because it’s better than having a tumor. I feel so angry when he says that. He doesn’t know what it’s like being a sufferer or a parent.
As for questions, I have started to say tumor when people ask because it’s easier. People don’t understand avm but if you say brain tumor they don’t ask any more questions.

49

Here’s how we explain it:

My husband is missing his capillaries. Normally the blood flows from an artery to a capillary and then to a vein. So when you don’t have capillaries the blood comes out of the arteries and puddles and then the veins suck up the blood like a straw. When it bleeds out the veins can’t pull up the blood fast enough.

Very simple but get’s the job done.

50

Irene,
thank you. I am really struggling right now and any words of encouragement are a Godsend for me. I am so sorry that you had to go through that alone and that your AVMs left you blind. I can’t imagine. I hope you have a wonderful holiday. God bless, christine

Irene C said:

Christine:


You were not wrong to stay with your child the whole time. In 1959 when I was 8, no one was with me. My grandmother who did not drive hired a private nurse whom I called Mrs. Goody. She was there at night every night and that is something I will never forget. Hospitals were different then, no one stayed around. My dad was in another hospital getting hernia surgery, so he could not get there much. And my mother, well, that’s a whole different story. Fair weathered friends, are not friends we need. We don’t always have fair weather. Tumor is good enough to say. Or aneurysm. I am blind in both eyes to the left (field cut) from the avm, and people do not believe me. Your doctor who said it’s better to have an avm than a tumor says stupid things. Both are no fun, I am sure, but how can he logically say that when there is no comparison to what your child’s or my situation is/was. Hang in there.

beans

51

It is very hard for friends and others to understand. With my husband , those on the outside of our lives like friends and people that worked around him could not see his disability. So it makes it very hard and a little frustrating to make them understand because they look at you like your making it all up. My husband by the grace of God lived through two bleeds they were seven days apart, the first time it completely covered his brain. He has to have a pretty strict schedule. with our friends and those that have contact with him don’t see these disabilities because they don’t show unless you live with him. so they don’t understand.

Tina

52

Hi Dianne

Yes I understand how it feels to explain to people, I had to use crutch and have a hard time explaining to them I have not sprain my legs, and it is not an injury, its spinal avm and I need time to heal after radiosurgery, and i am talking about months and years. I told a friend she is adding pressure to me by asking me whether I gain strength on my legs every single week.

Regards
Chui hk

53

Dianne,
I have to completely agree with your post. When I first had my bleed in September 2009 I didn’t remember being in the hospital at all. Upon coming hoome every morning when I woke up I would ask my husband where I was and what had happenned. Instead of giving me the straight answer he would tell me “your brain bled and you’re fine now. You’re going to be one hundred percent again soon”. This was his way of coping…by verbally denying what had happenned.
I find that when I tell people what I have now they do the same thing. They follow up my explanation with "Oh wow… but you’re fine now right?!"
I think people want to look at things with rose colored glasses on. It’s easier for them to lie to themselves and act as if what happenned is in the past and they don’t understand that this is something we now have to deal with on a daily bases and has often changed our lives in ways they can’t understand. Now, if I come into contact with someone I don’t really know on a personal level, I don’t even mention my AVM or I just refer to it as a brain tumor. Would you do me a favor though and describe your cyberknife treatment?
I’ve been looking for information about it all over the internet but nothing comes close to actually hearing it from someone who’s been through it. Upon seeing my neurosurgeon on the 26th of March I hope to be getting my referral to UCLA med center to start the radiation process.
Thanks so much
Jessica

54

I tell people who ask me that a normal vein connection is like a soaker hose hooked up to a fire hose and a garden hose on the end. The soaker is feeding the capilaries and then to the garden hose for the return to the heart and lungs. An AVM hookup is similar but without the soaker hose. All the pressure is then to the garden hose. It seems to work for me as long as people know what a soaker hose is.

Dewdo from the other Washington

Kate H. said:

I say “It’s veins in the brain that are bunched together and don’t do their job. So, they are cut off. There is a 30% chance of stroke or bleeding at age 10 and a 50% at age 20. 300,000 Americans have it and may not know it.” That’s usually more than enough information for a “Oh, I’m sorry.” and a change of subject. : )

55

Since I didnt know I had an AVM until the bleed, I just tell people there was a deformity in my brain that made it bleed and they had to cut my head open to stop the bleeding…this explanation satisfied the ten year olds in my class…if they can understand that, probly anyone could

56

I found a really cool shockwave on another survivors website and sent it our in a email to most of my family and friends. I even printed in out and usually have a copy at home or in the office and just kind of hand it to folks if they are interested… I usually will add what the risk are verbally…it has worked great. the link is : http://brainavm.oci.utoronto.ca/swf/surg.html I hope it can be helpful to you as well.

57

One of Husbands physical Therapist said to me,“Well what do you think your husband had.” They just don’t get it. They keep referring to it as a stroke.

Kim (Jaclyn’s mom) said:

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!)

58

I do agree with you. I tried to explain but in the end I gave up. Even most doctors, if it is not in their area of expertise. I am not talking about people that I work with or about friends. If they haven´t heard of it they think it is not something serious, sometimes people think I don´t understand my own illness and give useless advice. So, I have given up explaining, it´s up to them “ignorance is blessed”.

I am glad I am not the only one who experinces this kind of problem. I have a complex spinal cord AVM and one of my colleagues said, “Well it´s really a spinal injection”. I was speachless.

Thanks for raising the issue.

59

Marci said:

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…

60

Melanie said:

Marci said:
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…