Another thing I'd like to discuss-who else thinks everyone has AVM's?

I sit and wonder who all have AVM’s but don’t know it? Maybe they aren’t as rare as the doctors all think and they should do more research on random people? Like my friend who has frequent migrains that are terrible-I told her about my AVM and she said she’d rather not know and deal with the migrains. I just wonder who else have issue’s that they don’t go to the doctor for and just deal with them their whole life and may have an AVM. As an example also, my grandma was just telling me how she here’s a wooshing noise in her ear-I told her maybe she has an AVM since I have that sometimes too-but she said too that she doesn’t want to know if she has an AVM either! Any input? I would have never known about mine if I wouldn’t have been in a car accident and probably wouldn’t have gone to the doctors for my migrains or visual problems to get it checked further either. Thanks :slight_smile:

Hi Marcylynn,

A whooshing sound in the ears could be something, or it could be nothing. It’s normal for people to sometimes have that, or it could be a sign of tinnitus or other ear problems, or even AVM. Doctors can listen with a stethoscope for a bruit, the sound blood makes when there’s an obstruction, and the doctor is able to hear the sound too. But when there isn’t a bruit the sound is only audible to the person hearing it. I sometimes hear whooshing in my ears - not in both ears at the same time, and usually in the left one. But my neurosurgeons and doctors have listened, and there are no bruits or ear problems, so they say it’s normal and is just another sign that we’re alive. If you or your grandmother are concerned about hearing the sound your doctor can let you know if they hear anything or not.

Many people who have AVM never know unless something happens, or they aren’t even discovered until after death. Unless a person is having symptoms of some kind doctors can’t really be on the lookout or do diagnostic testing for it. So I doubt that everyone has AVM, but it’s hard to judge how much of the population might when people aren’t even aware they have one. And then some people do have issues and do seek diagnosis and treatment, but unless there’s been a hemorrhage or something like the accident you had, it might take a while to get a diagnosis.

I’m the kind of person who likes to know what’s going on and what I’m dealing with, but I understand how someone would feel like they’d rather not know. Everyone is different and handles these things in their own way. Also, like you, sometimes people have headaches or vision problems, etc., but may not really think a lot of it, or think they need to see a doctor about it. Some people just hate having to go to a doctor about anything, lol. Anyway, sorry it took a car wreck to discover yours.


I wouldn’t scare everyone who has ’ a symptom’ that they may have an AVM. There will be lots of people with AVM’s without knowing it, but here are people with cancer or anything else without nowing it as well. If we all wonder if something is really wrong with us because we have a symptom, the world will be full of hypochondriacs, and doctors wouldn’t be able to help people who really need it because they would be to busy with making scans and angios, and other examinations.

But I do agree that there should be more research about AVM and recognise the symptoms earlier. Here in Holland a lot of doctors don’t know a lot or don’t know anything about AVM’s.

It sounds possible. I have found that it is considered rare to have a pelvic or uterine avm, whether acquired from trauma or from birth, and that it is often diagnosed after hysterectomy. It makes sense about the migraines and the sound. The body has its healing mechanisms and perhaps there are degrees to severity. If endometriosis is displaced uterine cells, which in rare cases has been found in the lungs and brain, other cells could migrate or dormant ones become active. I was treated for endo on the appendix and over 10 years of pain and symptoms of acute appendicitis during menses resolved.

Also increasing awareness is crucial, for medical caregivers to be aware. Knowledge is power.

Thanks all to your replies-you all have good points & gave me a lot of good info to think about :slight_smile: