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AVM Survivors Network

Waking up


#1

Woke up couple days ago to wife there then not, there again then not… then walking with a paramedic. a neurosurgeon told me I have a AVM front left, and unknown EMG misfire on right or something like that. I have plastic toobs sticking out of me incase they need to revive me, in the morning they put a camera all the way up to my brain, and might fly me out.

This site broke some of that fear and gave me hope. reading the good and bad but all and all seeing everyone lend a ear and support no matter what.

Well done.


#2

<3 sending love your way


#3

Hey,

It’s great to hear from you and it sounds like you’ve got the attention you need. Keep us posted as to how you are and we’ll be thinking about you and wishing you a great outcome.

If you’ve got any worries or questions, just to alleviate the mind, feel free to ask here. But if you’re in hospital with an interventional radiologist or a neurosurgeon, they’ll be the right people to talk to about what they think you need and any risks associated with embolization or surgery.

All the best,

Richard


#4

Hey Richard. I assume you invited me, presumably because I live in the same province, to join this discussion/ see if I can help provide advice to this fellow?
Cheers, Eb


#5

Hi Bishop,

I live in Ontario, as well. Just east of Toronto. I also had an AVM introduce itself to me in my late 50’s…

Where are you now: both physically, and in your diagnosis/treatment, etc. Are you in the hospital in Sudbury? At home?

Cheers, Eb


#6

Well done, Bishop! I know there is great medical help up there in Sudbury. Keep up the good work. Glad you found us.

Seenie from Moderator Support and Pembroke, ON


#7

Absolutely! Your stories sound so similar, I immediately thought of you :slight_smile: I Hope you’re doing great.


#8

I am in Sudbury and released self home after yesterdays tests results. I was left in Hospital to bump me up on MRI and CScan list tests, all done. this is new to anyone I ask, I still have to accept this myself, and going to just watch the snow fall for abit.

I had ultrasound of my body as something was found elsewhere or my kidneys are building up meds and there throwing around the file. docs say very very little

This involves the brain, so doing a self check


#9

B,
I now know how hearing all this is pretty scary at first, but thank goodness you are here on this site w/fellow AVM survivors! When I found out about AVM, it was in the 1980’s, & for a while, I did not know how to even find other AVM survivors! In 1990, I elected to have my brain AVM fixed pretty well, & since then, this is my gorgeous 2nd Life, I call it.
Prays God for support now-a-days!
L


#10

Well yesterday I was shown images of my brain in a video conference form Toronto of my AVM. MRI anagram showing a 2.4 cm by 1.85 cm left and inferomedial temporal lobe golmeruler type. And entanglement of sphenoparietal sinus. That drains the left temporal lobe. Toward tentorial sinuses. Ex.

I think I still have more waking up to do. I took two steps back and yesterday had a chair thrown under me to sit there for awhile. Seeing images of my brain and the differences from my left to right made me take a seat. So…

I kinda panicked yesterday …reading ones MRI and CT scans on paper is one thing. Seeing it is another. Not knowing why the entire left side look different… and I will omit not knowing a thing about how to read a MRI image is the reason for speculation.

I did ask nurasurgian in charge of me to call me… Nicest man!!.. down to earth… but never the less my AVM is in a very difficult area and not an option. They where going to do a DVR or something like that. Cameras go inside with die… I canceled it after asking to hear straight up my options. I have been convinced radiation is the least I should do.

And my thoughts are on my apo phenytoin levels and stop taking them outright…looking into Dilantion and risks now. And will omit a bit in a panic state on this topic…

Reading people on hear… I have it lucky so far as it sound… but scared all the same… thank you for giving me a place to vent and perhaps get some answers…

Merry Christmas everyone!


#11

Hi @Bishop

So have you got any questions? I’ve no idea what much of the MRI report means and I have to say that your MRI image sounds just like the image I was hoping not to see for my AVM. Too much difference left to right feels scary, doesn’t it?

To fully understand the flows in your AVM, an angiogram whereby they send a tube with die up to specific points in your brain and squirt in the due to watch how it flows. They do that on a (very comfortable) X ray table and take pictures using the X ray to plot out the course of the flows. If they want to do that to fully understand what they might do for you, I would encourage you to consider it. It is the “gold standard” in diagnosing an AVM / planning an intervention.

If the area is difficult to get to from an open surgery point of view, embolization of it (blocking it up with glue and/or coils) may be an option. Equally, as you say radiotherapy is a possibility, too.

It’s absolutely normal to be scared out of your wits! However, understanding what you’ve got and what options you might have may help to calm down. Different people work in different ways but I think it helps. Time also helps – just getting used to things.

Wishing you all the best for Christmas, too!

Richard