If anybody on here is married, I’d like to hear your stories, how you met, how you explained about your Avm and how he or she took it, how long you’ve been together and so on. Maybe to if you have a boyfriend/girlfriend. I’ve been single for so long. Men treat me like an alien lol.


I’ve been married now for 28 years, two kids, one 19 in second year university and one graduating high school this year. My daughter in year two of a BSc, bilingual and plans to be a teacher. My son is accepted to electrical engineering for next year. I met my wife at a fly in only isolated northern community where she was a nurse. I used to fly in several times a month for a week at a time for my job. We had been married for over 20 years when my AVM decided to show itself.

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Hey Alison,
Yes, I’m married. Just had our 19th wedding anniversary. We met as volunteers running a youth group (she was one of the bosses, the coordinator). Yes, I married my boss and she’s still the ‘Boss’ :smile:

Personally, I’d had no luck in love, in fact I’d fairly much accepted that I was going to be a confirmed bachelor for the rest of my days. I wasn’t looking for a romantic relationship, it all started out as a friendship and built from there. Things were travelling along amazingly well (certainly amazing for me), then 6 months in and my diagnosis was made. I left the dr’s appointment thinking ‘That’s it, it’s all over’. I returned home thinking ‘This is my load. It’s not fair to be putting her through all of this…’ and I thought it only fair to give her the option to end it all. Well, she had other ideas… …she wasn’t going anywhere (Silly woman).

My neuro journey has not been easy. Ive required multiple neurosurgeries with the likelihood of more to come and she’s still here. I like to think we support each other, but she does much more of the ‘support’ than I. I’ve said it many times before but I don’t know how she puts up with me. I find it difficult to deal with it all and I’m the one living it. I have no clue how she deals with it/me.

For me, I found when I was ‘hunting’ for a relationship, it just didn’t happen. So I gave up hunting and it just happened. There was no planning, no expectation and we’ve been together 25+ years. I remind her regularly ‘You do realize you’d have gotten less of a sentence for murder’. :rofl: :rofl: :rofl: but she tells me she wouldn’t have it any other way (See, I told you she was silly :smile: )

Merl from the Modsupport Team


I’m not married, but have been dating my girlfriend for 5 months next month. Not terribly long, but she is worth writing about in response here. I met her 7 months after my bleed. Just before I met her, I accepted that love was not in the cards for me. I felt it was too difficult to explain the avm to someone and I thought it was a lot to put on someone too. So, I decided to simply just make my philosophical work my entire life. Then, my girlfriend entered our philosophy program in August and was assigned to share an office with me. We hit it off but I was still certain we’d go further than officemates. At this point, she told me about her health problems and so I easily told her of my neuroadventure. Weirdly, after about a month and a half, I had a dream about her and realized I had feelings for her. I decided one day to jump at my opportunity and asked her out for pizza. It’s been a really nice 5 months. I am a very difficult person to deal with because of my crass and highly critical attitude towards people. But, she’s never frowned at me in anyway and frequently makes my face hurt from smiling. She’s the yin to my yang in just about every way. She’s also always been by my side through it all. She went to the ER with me one night and waited with me for 5 hours while I was having headaches. If she never came along, I’d be having easter dinner alone tonight.


I have been married for 8 years and my husband and I have actually been together for 16 years. I am 33 years old and he is 35, we have been together since i was 17 and he was 19. When we got engaged my husband, at the age of 24, found out he had type 1 juvenile diabtetes so we had to put the wedding off to get things in order. Shortly after that i had my brain bleed, we once again put off the wedding. We were at home and i stood up after sitting on the couch and fell to my knees with the worst pain i had ever felt and i was incoherent. He pretty quickly took me to the emergency room. After 1 month living in the hospital and 5 months of waiting for the swelling to go down, I had my craniotomy January 2015 and we got married in August 2015 because i didn’t want to put it off any longer.

Although we weren’t married yet, my husband was at my side through the entire process. He was my medical power of attorney during the time I wasn’t able to make my own decisions. I can’t imagine the process on his end and I could never give him enough gratitude for all that he did.

I am getting older and still terrified to have a baby while being off the medications that have finally given me relief of the aftermath. I also have a fear of having another stroke or bleed. Its not fair for my husband to not have kids yet and i feel extreme guilt. Anyways I’m not getting any younger so the decision is still lingering and needs to be made.

I’m very blessed to have found him, and there are people out there who will not see you as an alien. They will be the one and you’ll know when they are standing by you through whatever you are going through.

God bless.


Hi, don’t give up on love, when it is meant to be then it will happen .I was married at the time i had my AVM with left side paralysis the marriage ended ,he couldn’t handle the seizures that i had and i was not the same person. So one day he was going fishing and I told him that I felt a seizure coming on he just said call your mom or the ambulance needless to say that was the end of that marriage i lost my self confidence and figured that no one would love me for me,until i met my current husband we have been married 25 years and together for 31 years total, don’t give up! The right person will walk into your life when you least expect it to happen


It’s boring to wait but the right person will come along!
I’m married but seperated and my wife is a radiographer so she should know how hard it is to survive a bleed. Your brain is not going to be normal or comparable with ordinary man.
And I’m 52 now so romance is far less important to me.
Just keep meeting new people…



Thank you everyone for your stories. @Timb you said my brain is not going to be normal or comparable with ordinary man. Hmm is that good or bad? Not sure how to take that.

I think he was replying to someone else’s comments but I think his answer works just as well for you if we say “… or woman” :wink:

My husband and I already knew each other and were work friends and my AVM actually developed years after we were married . We had to postpone our wedding two times because I had to get my gallbladder out once and had to a cyst removed on my ovary another time, he joked that if I didn’t want to get married I didn’t have to keep having parts removed.
There was a joke in my family that I was going to never really get married cause I was engaged a bunch of times before and would always break it off.
We had already been together 10 years when I had my stroke CVST and then found out about my AVM I think my crazy Italian and Spanish family gives him more worry.
He is the one I actually thought would end up in the hospital with a stroke or heart attack first cause he is ten years older and has high blood pressure and high cholesterol, COPD and is over weight.
I did warn him that weird and rare stuff runs in my family before we got serious.
He actually quit his high profile job at Vanguard running their Fixed Income division to take care of me. I do have to say they were not the greatest either in understanding that he had to take off time to care of me.

I have taken care of him through normal stuff like knee surgeries, oral surgeries and weird viruses.

I kept him in the house away from the world when covid hit cause he was high risk and both of us never got it thank goodness.

When you love someone you don’t care about stuff like if they have an AVM as a fault and definitely should not care. As we age something is going to be wrong with every person.

Hugs Angela

Or… you can just be happy that your brain will never be like a normal man’s… or even an abnormal man’s :rofl:

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Hi @Alison. I’m married to my college sweetheart for 18 years. She’s the mother of my children, lover of all things travel related, and wonderful friend. We met in college and on our first date I told her effectively, “if you want to end it on this date that’s fine, I figured I’d die single.” We got engaged 6 months later. That was nearly 20 years ago. She has been my rock through three bleeds, a stroke, craniotomy, appendectomy, gall bladder removal, and a host of other “minor surgeries”. We’ve had children, two dogs, a host of moves, and one crazy life so far. But I would say, and she has seen what I’ve said, I mean, I wrote “Malformation: when bad things happen to the right kind of people” and she was the first editor! But Les (my wife) has been my constant support and I hers. I hope you can find someone who can give you the support you need as well.

I found out about my unruptered and untreated brain avm when I was 18.
I had a couple of boyfriends after that. I always told them about my AVM. Not on the first date ofcourse, but after some months of dating, when I felt safe to open up and be vulnerable. It was never an issue for them.

I’m married. Met my husband 6 years ago. Also told him after a few months.
It has never been a problem.
Only now it is bothering us, because the AVM makes the decision for a second baby so hard.
But he never treats me like an alien and he always supports me.

I told about my AVM like this: “I have an accidentally discovered weak vessel in my brain, its called an AVM, its very rare and has a chance for a brain bleed. Docters said not to treat it. Hopefully it will never burst. I sometimes get migraines that might have to do with the AVM. I also had one epileptic insult (grand mal seizure) while being sleep deprived.”

Most of my friends an family members know, but nobody seems to be shocked. They all react like "We are all human. We can all have something or become sick. Life is always risky for everybody. We never had our brain scanned, who knows what we have in our brain. You just happen to know. "
People always forget that I have it; because whenever I bring it up they have already forgotten.

Like somebody else already mentioned, the right person will come along.
Besides that, I think its also important you don’t see yourself as an alien, because you are not!


I must thank you all for your talks about marriage. But you know what? It seems to me that people over in foreign places treat others differently then how the people in the USA treat each other. It’s like they are more accepting over there and I’m not sure why. :thinking:

I have a question for you Elisa. Why didn’t you tell guys on the first date about your Avm? Were you afraid it would turn them off??

Yes partly because I was afraid it would turn them off.
And also because I think the first date is mostly fun and to explore eachother a little bit but more on the surface.
Then gradually you get to know somebody better and you decide if somebody is worth opening up to.

A lot of my first dates weren’t even worth opening up to.

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I’m sorry people in the USA make such a big deal. In the Netherlands everybody is very down to earth.


Update: in the meantime I gave birth to that second child 3 months ago :slight_smile:

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My husband and I have been married for 1.5 years, and had been dating for 3.5 years before we got engaged. He proposed in December 2020, and I was diagnosed with my AVM in January 2021. I told him, if you want out, now’s the time! :joy: But he’s stuck with me through it all. Even having gamma knife radiation two months before the wedding, driving me to and from infusion treatments, helping me out on my bad days—he’s been a god-send. I can’t imagine what it’s like to go into dating and having to weigh when to tell them about your AVM, but have hope that there are people out there who will love and support you through all of it (even in the US)!