Yes… in my case it was even worse. My husband left me when he found out about my AVM. So far i have had 5 embolisations he just took me to the hospital. We are in touch, but we don´t live together. He could not cope with my illness.
Men…they are scared of illnesses.
Oh Melanie. I was with my husband through out the whole one week in Neuro ICU and four months in ReHab and then when he came home I washed and dressed him every morning. Took him to his DR appts. Pushed him up the ramp into the Medical Center. They have no House Dr visits. I’m 65 yrs old. Drove his truck and took him to all his appts. But thank God he still had his mind and could deal with his Companies issues, and the Insurance Companies. I was a Caregiver and still am, and his Chaffeur. He just went back to work full time but I still am his Caregiver. He still needs help with certain things. But now he washes and dresses himself and drives to work. I still need to help him in the morning with getting his medicine and making sur ehe gets out the door ok. I’m so sorry your spouse can’t deal with this. Its for better or worse., in sickness and in health. We’ll be married 40 years. But I don’t think he could do it for me. If he was well and I was sick. And I wouldn’t want him to.
Melanie said:
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…
Others don’t understand!
I generally don’t have too hard of a time explaining it, but then again mine ruptured 14 years ago and I don’t know hardly anything about any of the procedures to cure AVMs, the best way I have been able to explain it is that it’s similar to a brain aneurysm or a stroke.
I just say my husband had a brain hemmorhage.
John Sawyer said:
Others don’t understand!
I know this is an old discussion but…
I am 7 months post 2nd Gamma Knife. My boyfriend of over a year now asked why I have to get MRIs. I tried to explain that they need to check on my AVM and its progress of scarring shut. He says just sounds like them wanted $ having to get them so often. He doesn’t understand how important it is to keep a watch on it. I cant explain it to him in a good way for him to understand. UGH. He is the most loving kind guy but when it comes to health insurance and hospitals he thinks they just take take take. I just stopped talking about it. If he asked I just say I am fine and all is good. lol
I like Ben's answer. Another way to deal with people might be to just tell them you have a condition you do not wish to discuss. There are some people who are very quick to question any kind of "brain disorder". It is heartbreaking to learn you have an avm and so you could say it is a heart condition.
Our neighbor just had a brain bleed that resulted in a craniotomy. Now, her face is paralyzed on one side, her balance is gone. Her eye has to be taped at night to close the eyelid and there are other problems. This was not caused by an avm, it just happened. I told my husband I was concerned that she might not be able to work at the family business this summer. He brushed that off with a quick comment about how she would be fine. A lot of people are just clueless.
I have done that too. Just say it acts like a tumor, but it’s a blood vessel.
I feel your frustration, really. I start any conversation with the word "stroke ", if the conversation progress from there, then I introduce the subject of an AVM. Have had mixed reviews, but, it’s easier on me. Hope that helps a little.
Ya, I’ve resorted to stroke also as the short explation.
I completely understand your situation. I am basically dealing with the same thing. My family and few friends that I have think that since I’ve had the GK all is good and it absolutely isn’t. My own mother refuses to even google anything about an AVM. It is very hurtful and frustrating. Especially when I suffer from headaches daily, nobody but my husband really understands. I just wanted to say that yes, I understand your situation and I know how frustrated you must be. Hang in there. If they aren’t willing to try and understand or take the time to learn, maybe you shouldn’t waste your time on them!! Best wishes 
I usually say ‘AVM, which is similar to an aneurysm’. As no one has a clue what an AVM is.
My partner has been the same. He says he is here for me but doesn’t understand how serious and scarey it all is even on the days im in surgery. I think its more so denial than anything. He doesnt want to except how serious it can be.
“Your home now, you look better or your fine!”
Yes, this has been a problem for me too, I have considered shaving my hair off to show my scar and the indentation in my head especially when I am very very tired and he and other people don’t understand why I can’t do things. But then I think that defeats the whole purpose of having had surgery- to try to be part of the well world again. Everyday is a balance, it’s 20 months since I had the craniotomy and just over two years since I had double seizures but its really difficult. I’m also going through premature menopause so it’s a bit of a double whammy- scars that cannot be seen, conditions that don’t instantly make themselves visible are incredibly hard to understand by anyone who doesn’t live them. I have been talking a lot to my partners cousin who has a cochlea implant and she experiences a similar thing with how people relate to her deafness. There is such a slender membrane between the ill world and the well world but a chasm of misunderstanding