I know this girl who evidently has as inactive avm and she found it so “cute” that i had one too. She didn’t seem to get the seriousness of it at all. (plus she does like everything to be about her).
Joy said:
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.
When first diagnosed I told people that it was similar to an aneurysm but then I wasn’t sure if I was giving accurate information or not so I stopped saying that. After reading your post I feel better about comparing it to an aneurisym! In reality, are AVM’s the mother of all aneurysms? I know that AVM’s are a hot spot for aneurysms to appear.
Christine Wellborn
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!)
People that I know don’t want to understand, it makes them feel good to think that I am fine, if I am fine the ones that know they have not done or will not do anything to help me are relieved of their guilt. They are not really thinking about me, they are thinking about themselves.
I get text messages, asking How are you? I type back, the same. They don’t care, they don’t remember what I said before, I’m sure not going to say it again. I don’t waste anymore time on these people, I don’t call them and I barely answer their phone calls when they call me.
The next time one of these jokers ask me How do I feel ? I’m going to let them have it, I’m going to say how in the hell do you think I feel, I have an avm and I had two strokes.
If I ever talk to them, I spend most of my time these days trying to heal and being thankful for my husband, my daughters(my 22 year old is especially helpful), my 17 year old does what she is asked and I ask a lot these days and the few friends who are helpful. Beverly is so special, I use to pay her to help me, she won’t take any money, she just comes over and helps. I will not explain anything, they can look it up if they really want to know. I have to know they really care before I start explaining, the few on my list that have shown me that they really care, listen and understand because they want to. The people that I know that appear to be showing their true colors are not surprising me, I had their numbers long before the avm. I’m surprising them though because I don’t have anytime for their junk now. To be a part of my life now, you have to be concerned about me. I will not make them feel good and quilt less by acting like I’m great.
Ameenah, you are sooo right. Those that want to understand do and those that don’t, well they don’t truly care and they aren’t truly friends. Well, I care about you my dear, and we’ve never even met!
Well i agree I’m also tired of explaining this situation to others as well. Especially when I need to go to the ER for a cat scan and the nurses have no clue what it is. They look at me as if I’m nuts. They say things like “so you just have a migraine”. I want to just yell at the top of my lungs at them. Its hard b/c i look healthy and fine but i;m not. So guess I totally get what you mean. Even family some times forgets all the things that can still happen even though I have had treatments done. Know i mostly tell people I have a defect that takes time to fix and hope they don’t want more info than that. But its probably also easier to say brain tumor.
I usually say AVM. They say “huh?”. I say it’s a brain tumor, but not cancerous. Or brain aneursym works too.
Andrea Fisher said:
Well i agree I’m also tired of explaining this situation to others as well. Especially when I need to go to the ER for a cat scan and the nurses have no clue what it is. They look at me as if I’m nuts. They say things like “so you just have a migraine”. I want to just yell at the top of my lungs at them. Its hard b/c i look healthy and fine but i;m not. So guess I totally get what you mean. Even family some times forgets all the things that can still happen even though I have had treatments done. Know i mostly tell people I have a defect that takes time to fix and hope they don’t want more info than that. But its probably also easier to say brain tumor.
I feel the same way it takes a while to recover, I had a crainiotomy but still not at 100 percent but I have 2 new ones so it is a life long thing and I am so glad that this website is here it has helped me, I feel my own mother does not understand it yet and she was with me the whole time but we are here and we understand if there is anything you need let me know take care of your self and give yourself time to heal.
I totally understand what you are going through. I feel that everyone thinks its ok since I went through my treatment, but I still have a long way to go. Its frustrating!
I totally understand how you feel. I found out I had an AVM in 2007. I then had Proton Beam radiation. Six months later, I had a brain bleed and had a Left Temporal Craniotomy. To this day, no one understands that I have an AVM, what is an AVM, why a brain bleed and what is a Craniotomy.
All we can do is hang in there. I just explain as much as I can, but to be onest, most people don’t have a clue what I’m saying.
Stay strong. The people in the AVM Survivors understand. That’s all we have so keep in touch!
I’ve told people what the acronym stands for, and then I told them that instead of a capillary bed forming, the veins and arteries got all tangled up. Most people have responded with something like, “Oh, I can see how that could be a problem.”
I come to the point of not even telling anyone that is not in my immediate family. Tired of all the funny looks and people thinking that I am brain damaged. Yes, very frustrating
your question is exactly describing how i’ve been feeling - particularly why i am LOVING this site where everyone knows what i’m talking about!
sometimes i wished it WAS a brain tumour so i could just say that and people would understand the seriousness! now i just say “it’s an AVM… if you want to know more then google it”
