First, welcome to the group. I have never met a group of people on the internet where there is concern and support like here.
I have spent many hours hanging out here late at night, when it’s been quiet and I could read and do so uninterrupted. Not only reading but also mourning all that I’ve lost because of this AVM. I would encourage both of you to do that. The power of knowing you aren’t alone is huge.
While my experience iisn’t the same as yours, let me share a couple of things that I’ve learned…
-I’ve been battling this beast for 41 years now. There have been some very long “truces” during it, but it’s always been there to remind me that it isn’t gone. It’s okay to mourn what you’ve lost and I think that allowing/encouraging your husband to feel sad about what he has lost is a very important gift you can give him.
-I’m currently almost 15 months since my last AVM procedure where they put a ton of super glue and about 30 coils in my head. There was a time, approximately 6 to 9 months out, where I made some pretty decent steps towards resolving these issues. And there have been many that haven’t improved at all.
If I can’t see it, then it’s your problem, not mine. Invisible (relatively speaking) disabilities are hard because people can’t see them. A friend of mine’s daughter lost both legs above the knee. You can tell.
Learning that unfortunately, many in the world view that you are what you do for work. That makes it very hard if your sense of self worth is tied up in a job you can’t do. My counselor and I have spent a large amount of time working on what that means and how to break free from it. It has taken a long time to get to that point and I am not by any means there consistently.
If it is available, I would strongly recommend that the two of you look into where you might be able to go (either just your husband or both) and talk through and grieve what you’ve lost and map out a plan for how to deal with the disappointments. I can honestly say that if I diidn’t have “my Randy,” at some point in the last 15 months, I would have ended up hospitalized or worse. Yeah, it’s that important and that’s why I’m talking about it - it needs to shed the social stigma that currently plagues it.
- My laryngologist has told me that there are certain procedures he will not do until someone is at least 12 months post procedure. Why? Because inflammation can take more time to heal than expected. I’m at 15 months, if any major changes happen it’s going to be a miracle or me retraining my brain to compensate.
I have no experience with your exact medical situation, besides I wouldn’t want to attempt to practice medicine without a license. But I, unfortunately, have fairly extensive experience dealing with the curveballs that an AVM throws at us.
My favorite line from the movie, “Finding Nemo” is “Just keep swimming, just keep swimming.”
May the water that we all swim through be a beautiful ocean with a white sandy beach and not muddy flood waters racing down the mountain.