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AVM Survivors Network

Confused

#1

Hi, I’m Wooley, I’m 38. It’s been 5 months since my last surgery. I just want to share, or ask, is it okay if I still feel disoriented, confuse, still unable to read much, think much, cos when I do, headache start coming again, I gasp. I do look okay, getting better in speaking, walk as usual, but not everyone aware of AVM here, so when I told them about AVM, they just replied back with a blank stare.
I can’t explain to my families about how I feel but they seem understand about my condition.
I have no idea when will I go back searching for jobs, cos I’m a single mom with 1 daughter. Right now I’m about to sell accesories and clothes online, hopefuly I can start it soon.

#2

Hi Wooley:

My AVM did not require surgery because it “sealed” itself. However, I had Gamma Knife and I still suffered with confusion, unable to read along the left side of a page, headaches, balance issues, speaking issues, and all the rest. It took me about 6 to 9 months to start feeling better. That’s when the fog started to lift, and my memory improved. The other things (balance, confusion, daily headaches, word-issues, vertigo etc., too even longer. AVM’s are a rare dilemma and hard to explain to friends. family and co-workers. That’s where we come in. You can always share your AVM issues with this group because “we get it … they don’t”. I wish you all the best during your recovery. P&P (Prayer & Patience) helps me. Try it.

Sharon D…

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#3

Hi Sharon :heart:

Thankyou so much for sharing yours, it really help, a lot. Maybe I have to be more patient with these recovery things and try not to be so hard on myself. Once again thankyou so much Sharon, I’ll try P&P, as your suggestion.

Regard,

Wooley

#4

Hey Wooley,

Join the ranks. When I read your sentence about your symptoms, the only thing doesn’t describe me is that when I do those things, it just flairs up an already present headache.

We were emotionally unprepared for this as a possibility. I’ve been off work for 15 months and I’m pretty much trying to remake myself into something that works within my symptoms. Not getting very far.

You are not alone, and it is okay to still feel those symptoms. One of my symptoms is throat and vocal cord paralaysis. The laryngologist that we’ve been going to has told us that they will not consider certain procedures until it’s been at least two years.

Vent away, tell us, ask us. That’s why we’re all here - to ask and to answer, to help and to be helped, to talk and be understood, because it is rare outside this world.

TJ

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#5

Yes, yes and yes. All of those things are ‘normal’, that is, if you can call them ‘normal’. And as for the blank stares, well, that’s pretty normal too. When people can see an injury or have an experience similar, they maybe able to comprehend. But for those of us with rare conditions often others outside of this reality have no reference point to be able to comprehend the reality of it all. I often explain it like this: “When you break your leg they put the affected limb in a cast and you are on crutches for 8weeks. It’s fairly obvious you have a broken leg. After 8weeks everything is healed and things go back to normal. Now, take a brain injury, no cast, no obvious signs and 8weeks later often nothing has healed” and this can be really difficult to explain. That line of ‘Ohh, but you look OK…’ is very common to which I often respond to with 'Well, you want to have a look from this side…" What they can see is next door to nothing when compared to what we have to manage. Trying to educate others on this reality is near on impossible, I know, I’ve tried and I too get those “Blank stares”. Many/most people just cannot grasp this reality.
So you vent as much as you need, you’ll find no judgement here. We know, we get it, because we too live it everyday.

Merl from the Moderator Support Team

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#6

Dear TJ,
Thankyou so much, pretty relieving I met people that uñderstand it all. My mom glad to hear that I found this group :heart::heart::heart:

#7

Hi Merl,

Thankyou Merl for the support, it’s really relieving reading your reply :heart::heart::heart: