Right parietal/occipital lobe AVM- not one doc has talked about options- only epilepsy meds?

@Daniplus2

The way I look at it is that you’re both finding your way to cope, to get through the current struggles, in whatever way you can. Sometimes, it is understandable that throwing yourself into work and largely ignoring the difficult stuff is a method. You’re doing it your own way he’s kind of doing it his. The best thing you can try to do is to understand each other. You’re going through the toughest of times at the moment but I’m sure it won’t be like that forever.

Stay strong because you’ll get there.

Richard

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Hey Dani,

All of this can be very overwhelming for anybody, well, it was for me. For many years I’d tried to inform people ‘Something just ain’t right’ only to be discredited, minimised and made out to be every kind of crazy. It was just easier to ignore it all and ‘try’ to get on with life and the only way I could do that was to be ‘an ostrich’, it was/is a safety thing because if I really sit down and think about it all I can drive myself (and everybody else around me) absolutely crazy. So I ignored it all, buried myself in my job. As a male there is often a social expectation of strength, be that emotional strength or physical strength. We’re not taught much about emotional strength, so we often use physical strength to push on through and that’s exactly what I did. I ignored it all and that was not a good idea because things progressed.

Then I had a major incident and the medicos decided to investigate further, then they told me that ‘wait and watch’ was the best approach. I had already been waiting, I’d already been watching. My symptoms were increasing, to be waiting further was NOT acceptable to me, so I went looking for a 2nd, 3rd and 4th opinion. I wanted to know all of my options. What can I do? Who do I need to see? Get it done.

Thankfully, here in Australia, we have universal healthcare. In very basic terms, if surgery is deemed medically necessary, it’s covered by the state. We can obtain private health insurance if we wish BUT no insurer will come within 100mile of me. I have enquired and was told “we won’t cover your head”. Now, I queried this. “What I trip up and break my leg?” and was told “…we could argue you had a dizzy spell, causing the fall”, " And what if it has nothing to do with my head?" and the response (And I quote) “We have a team of lawyers who will fight it…” That really says it all, I’d have no chance.

I’m now considered too much of a risk and they simply won’t cover me.

As for your husband, I have to agree with DickD. He’s doing it his way. Surgery is never something that should be taken lightly and being neurosurgical, that takes the acceptance of it all to a whole new level. That acceptance is not something you can influence, that is up to him. Forcing the point can often back fire, not a good idea. In all honesty all you can do is be there to support him in whatever decision HE makes. I say all of this because I battled with that ‘acceptance’ thing. My view was “That’s my brain, that’s what makes me, ME, and you want to do WHAT???” and then there was all of those 'What if…" questions ie ‘…what if ‘X’ happens? what if ‘Y’ happens…’ (I use ‘X and Y’ but I had more questions than letters in the alphabet). If he wants to talk, let him, but if he doesn’t that’s OK too. My mind went into overdrive, constantly all day. Talking to others about something, anything else gave me a break for my own incessant thoughts. It was similar in my employment. Working kept my mind occupied on something other than me.

Merl from the Modsupport Team