It has been and continues to be a painful time for me and my family. I can only hope there are brighter times ahead.
Like you say it’s not long now until I start treatment and hopefully the 4 years will pass by quickly and uneventfully. I have to try and stay positive (I am consumed with fear at the moment) and as you say try and think about it as the start of getting better rather than getting worse.
I have read many posts on here and see you offer a great deal of support and good advice to others. You are doing great work.
When I arrived here 5 and a half years ago, I had self-diagnosed an AVM (courtesy of Dr Google & partly because I could hear it) and I had recently gained a formal diagnosis from an ENT consultant. My world fell apart. I had taken my health for granted for over 50 years and it all crashed in in one go because of the fear that we all have with a brain AVM: how much of my brain is taken over with this thing and will I have a stroke?
The honest answer is that I am convinced I worried far too much about the unknown and it was that fear of the unknown that did me the most damage.
So if I can lift a tiny bit of that fear from one or two others, it is worth it. The people you find here are testament to how good treatment is these days and I’m grateful that mine didn’t announce itself until relatively modern times. If there was ever a time to have one of these things, today is better than 10 years ago and way better than 20 or 30 years ago.
I know you’ve got quite an extensive AVM, so you may have a more adventurous time than some of us but we’ll be here for you along the way, very interested to know how you get on, and cheering for you from… all round the globe to be honest.
So my incitement to you is to be encouraged by others and put away some of the worries because it is fantastically unhelpful to worry about this stuff as much as we do. It’s absolutely normal and I’ve been there but it is unhelpful on a major scale.
My wife was taken ill last Thursday and is currently in hospital having had a suspected heart attack. Tomorrow she is scheduled for a radial coronary angiogram and if the interventional radiologists can see that a stent or two will sort her out, they’ll pop a stent in. By virtue of having gone through three angiograms and a brain embolisation procedure, I’m as cool as cucumber about it!! I’m trying to encourage her that she saw how easily I got through the angiograms and there’s every reason to be almost as cool as me. I think it’s working a bit but I know it is different when it’s happening to her.
The same applies to you. Fear of the unknown is the baddie. We’ve got people here who have done it before. We’ll be with you.
Rather excitingly, she managed to arrest during the coronary angiogram on Thursday (for which she was awake) with the doctors telling her to “Cough! Cough!” to get it restarted before she might faint. She got through it ok.
She now has a massive list of medication, some of which are short term and some of which are lifelong. She’s fine. Having a ton of sleep today but a lot better than Thursday this week (or, for that matter, Thursday last week).
Having had a brain angiogram or three, I was really cool about her having the angiogram and was encouraging her for much of the week that it would be fine. She’s seen me go into and come out of those angiograms herself, so should have been a bit more comfortable than having not had any experience at all and then it seems she had an adverse reaction to the contrast or to some other step among the way! However, all done now and has been home since this time yesterday. We went straight to her mum’s house to show her mum that she was fine yesterday, then home.
I hope everyone here is getting on ok because I’m a long way behind the conversations. It fantastic to see the community nicely alive with people swapping stories but I’m not paying much attention this week (and maybe not in the week ahead) and falling a long way behind. I know there are other mods who will look after you all.