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AVM Survivors Network

Monday Morning - at least where I am

#1

I’m just going to say “Morning” because I’m not sure yet whether it’s going to be a good morning or just a morning, it’s been quiet on here, so I thought I’d throw a couple of thoughts out that have been bouncing around my brain (yeah, I know the irony of that).

What’s new with me? On Friday, I e-mailed my son’s school and told them I can’t substitute teach any more. It didn’t pay a lot, but it’s a urban private school and so there is a huge amount of diversity - in nationalities, in places of birth (I think 27 countries) and in emotional growth/healing because many of them had a very hard life before (and some still do). I haven’t done it since my embolization but I really wanted to come back. With licenses and all of that, if I can ever go back, I’ll just have to do that all over again.

I love the kids, when I sub the kids and the staff are way more friendly than I ever was. As my counselor said when I told him I’d reached that decision (we’d talked about it a lot), “I’m sorry, Tom, but I’m not surprised. The dynamics of a classroom just wouldn’t work.”

On to doing a little laughing at ourselves, two questions for you:
1.What is the weirdest thing that happened to you because of your AVM or the treatment in the last say 1 1/2 years?

  1. What is your overall strangest side effect you’ve had, ever?

Cheers!

TJ

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#2

Weirdest thing that has happened to me was about 2 weeks post op and I had a check up with my Neuro surgeon. His office is at the same hospital as my wife works. She said to me, "I have to run over to 3 Center to get something 'I don’t know what it was. I had run into one of my son’s teachers - visiting someone she knew. My wife asked me if I was going to be fine. I said yeah, I know the way around here.

We got done chatting and my friend went on her way. I had to take the elevators from the 5th floor down to the 3rd floor and then walk across the skywalk to the children’s hospital.

I knew exactly where I was, to this day I can tell you where I was. But I could not find the stairs or the elevators - and if I asked someone, “excuse me - could you tell me where the elevators to the 3rd floor are?” “Go down this hall to the reception desk, turn left and they will be on the right.” So, I do what I think that was, and no elevators. I wasn’t scared but I did wonder what in the world is happening…

Little did I know…

TJ

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#3

I swear I could probably get lost in a closet with my loss of left peripheral vision and poor spatial coordination I was looking for a restroom in a restaurant. I walked around the restaurant twice only kept seeing one door and decided that has to be a unisex restroom; walked into it it…wasn’t unisex…it was the woman’s so I have to ask directions in the women’s bathroom how to get to the men’s bathroom… quite embarrassing and the shocked look on the woman’s face made me want to crawl away, but she was better after I explained that I can’t see the left.
I hate admitting my deficits but once she understood she was more than willing to show me the way… sigh… my wife no longer wonders why I have anxiety trying to find my way to a restroom in a new place!

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#4

Hey TJ,
Morning? Ohh that’s only because you lot are always behind the times. It’s more like evening over here lol lol lol

My condolences on your teaching role. I had an awful battle with myself to come to the acceptance that I could no longer perform in my role. I too was a teacher but teaching people with disabilities living skills within their own home environment. It was a role I really cherished as everyday was different and you never really knew what you were going to face from one client to another and because of that I needed to be really adaptable/flexible and resourceful to deal with and manage absolutely anything. This was a skill set I loved, lots of lateral thinking needed and I HAD those skills. If I try too much lateral thinking now and my mind turns to mooosh, with a thumping headache. But the acceptance of it ohhh…. ….even years later I still battle with the acceptance. I REALLY DO MISS IT!!!

Weirdest thing was initially the change in taste, which has now settled, luckily
Overall has been my sight for a while I was seeing 2 of everything (Like my sister in law. One of her was scary enough lol ) but it too has settled. PHEW lol
And my balance, stand up get the dizzies and ohh not nice. I seem to be able to find the floor real well.

Merl from the Moderator Support Team

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#5

My strangest side effect, by far, happened in 1986. I had 9 different embolizations in 7 months. I was a skinny, worn out wreck.

But a weird thing happened. If you are wearing a traditional shirt, find the seam that goes around that attaches the body of the shirt to the sleeve. Now go down about 3 inches on the outside of your sleeve.

Scratch your finger there. Where do you feel it? Duh, right there.

Nope. When I scratched that particular spot - I felt it in my ear lobe - just above where you would pierce your ears (I have 4 daughters, I know a little bit about ear piercing.)

Lots of doctors have given me really puzzled looks on that one.

About 5 to 7 years later, I noticed it was gone.

TJ

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#6

Speaking of taste, I’ve had a very weird conundrum of sorts with that. Ketchup tastes like hot sauce to me.

You give me a big juicy bratwurst and put lots of ketchup on it, I would have a hard time eating it - it would be so spicy.

tjv

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#7

The strangest thing that has happened to me since my operation is the fact that I can not remember what foods I like anymore, I will ask for a dish and I will receive a puzzled look from my wife before she tell me I do not like this type of food. discussion will ensue and deleted she prepares what ever meal I requested just for me to realise I do not like this food plus I can now never get enough of chicken wings all day every day just give me spicy chicken wings and yet before I was not a fan of chilli but this could also be the fact that for some reason I got my sense of smell back when I did not even realise I lost it. Not a Hugh thing just an odd thing

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