My boyfriend of almost 3 years had suffered with debilitating migraines for most of his life. A year and a half ago, he found out that he had an AVM in the right side of his brain. He finally had the removal surgery (craniotomy) in Sept. 2017. He no longer has the migraines, however, he lost half of the vision in his left eye and his personality has almost completely changed. I am struggling to support him while he recovers, as we do not live together yet and he did not tell me much about the surgery before he had it, so I did not know what to expect. He reassured me beforehand that he would not change or stop loving me. I love him completely and prior to this, we had discussed marriage and our future life together. Post-surgery, he is rude and hostile or ignores me most of the time and is never romantic anymore, even though he says he still loves me and wants us to eventually get married. It’s like he’s a stranger but still in his body.
He refuses to discuss anything related to the AVM/surgery/recovery. He’s always been a bit of a perfectionist and I think that he now views himself as a flawed version of how he used to be (he’s said that I’m too good for him and that one day I will realize it and leave) and I think that he is very frustrated with the changes that have occurred which he has little/no control over.
I’m here to get advice on how to cope (I tend to take it very personally when he verbally lashes out at me, though I now know it’s largely because of him being frustrated and irritable) and how to help him in any way that I can.
Welcome to our community, its great you’re here with us. We have a wide variety of patients, care givers and family of people impacted by AVMs. These things are so different in so many ways, and we see a lot of similarities but a tremendous variation of impacts. The location within the brain being possibly the most impactful on potential side effects of treatment or not. Healing is very slow and improvements in effects can go on for a long time. I’m confident a number of people will add here. Know you have our support, we understand the difficulties these things present. Take Care, John
Welcome !! So nice to have you here, sounds like he needs to be a member and on site, he would realize that he is not alone and a lot of people deal with the same feelings, Only avmer’s get avmer’s and I think It would be very helpful for both of you, he would also realize how fortunate he is to have you, I commend you on your efforts, get him on line with us, we are all here for each other and this site has helped me immensely, take care,
Change is inevitable after such surgery. I had an AVM removed in January and I think I’ve reacted very much like your boyfriend has. Fortunately, my wife (we’ve been together 36 years) is a saint and has made allowances for my tetchiness/crabbiness. Hope it all turns out OK for you both
Welcome to the site! It is great that you found us and I hope you’ll get some views from different people with maybe similar experiences. As John says, depending on what specific part of the brain is affected can very much affect the results.
I can’t say I have any similar experience to go by so I’m just going to offer my own thoughts, based on being here for a year or two and reading others’ stories. Hope I can help.
I think there could be several things at play here.
It’s pretty early in his recovery. It is. I had an embolization this time last year and I’ve not felt right since but I have to say, I’m having a remarkably good week this week and I feel fine. As of the last 6 months, I’ve been convinced there is still something left in my brain to fix but somehow this week is fine. I’ve read of recovery stories that take anywhere between a year and 4 years for someone to be back to as good as they’re going to get.
I’ve got you down already as a very supportive girlfriend and this thing is going to test you both. I reckon you can get through it but it’s going to be a big, big test.
The surgery or AVM itself could have done some damage whereby his personality has been changed. Recovery might lead on to him becoming less tetchy and more like his old self. I hope so completely. It might not. It might be worth talking to the doc about that just so you both understand what recovery is possible. It might be a bit early for that conversation.
This thing could be scaring him completely. Some of his behaviour could be because he thinks you deserve better and he’s trying to scare you off. This might be conscious. It might be somewhat unconscious. I think this is part of the challenge you’ve got.
I don’t really know what to suggest that will work but you could just stick it out. Take the verbal hits and show you’re still there. Show him you’re really prepared to stand by him. Talk to him that it is clearly in his recovery and he will start to be better but it is going to take a long time. See through the behaviour that it is either induced by his injury or is driven by his own fear. It isn’t necessarily what he will always be.
But I think it will take great patience to work through it.
If you stick with it, remember your own support. You may well need help to get through it. Here is a great place to come ;and there may be other people you can talk to; or talk to your doctor or other support services if you need to.
Don’t take the attacks personally. I think that’s the key. I’m sure the cruellest thing is the personal nature of it but either it is his injury talking or it is him trying to “defend himself” by pushing you away. De-personalise them that way. It’s hard but it could pay dividends.
…that’s me. Let me know if any of this is useful.
Welcome to the group. We will support and encourage you as much as we can. Bottom line is that your boyfriend, the perfectionist, is SCARED!! And when you are scared, you tend to treat those closest to you like they don’t matter because they are the injured party. Let him have his pity-party a little longer. I know I had mine on more than one occasion. He will have no choice but to come to terms with his AVM situation. Having an AVM is hard and painful and confusing and it does change personalities. Don’t let him bully you. “Clap” back at him once in a while. Let him know that you have feelings too. Tell him that just because you don’t have an AVM, you still have feelings and you matter. He will eventually come around because he has too. We, the AVM-ers of this site, are pushing onward and moving forward each and every day. It ain’t easy, but we somehow manage to do it. I wish your boyfriend all the best and I congratulate you for hanging in there with him. Know that things will get better.