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.
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,
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?
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?
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
Absolutely! Your stories sound so similar, I immediately thought of you I Hope you’re doing great.
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
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!
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!
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!
Hitting that snooze button and giving yourself some “time to wake up” to what just happen and the changes, was the key for me. Might not have been on the right key chain at first… but I found it.
I had the halo bolted to me for stereotactic radiosurgery Gamma Knife, Angiogram, Advanced embolization treatment* (may 2019) and some dissolving tubes and things. was passed back and forth bolting my head to this and that… had to sign some papers in the middle of all that. it was explained to me… just don’t remember everything said… and everything went fine!!! kinda…thats a different topic… it was me waking up to all this that was the hard part with months of me going what if??? or wt…
Not the doctors, hospitals… bolts in the head… that’s all over before you know it, at least in my case…it was me scared before and after for no reason…
Sometimes you need that extra 10 min to “Wake up”
I agree. The mental impact of these things is at least as big as the physical impact.
It’s good to hear from you again. How are you doing now?
I am doing good, I walked out of the hospital with my Hawaiian t-shirt on ready to take on the world… but hit the ground a couple more times… I am due for another one. I was told this could take up to 3 years to set in.
Well, it sounds like you’re keeping on keeping on, which is the right thing to do. Keep up the great work!
Its been over three years… most of all things have been good… but today i am in a panic… doctors say my AVM shrunk from 2.8mm to 1.4mm… but once again woke up to a room distroyed… blood everywhere and my toung allmost bit off… today i need to talk to someone as im about to crack…
So talk to me. How can we help?
You know what… just getting on here and updating myself helped… I was lost in my own thoughts with no way to vent… I looked for help but was confused on where to find… so I opened this again…just reading others stories calmed me back down to normal…
Well, it’s what we are here for. Come by as often as you find it helpful. Sometimes it is more difficult to be here and read of people in trouble. Sometimes, it is helpful. So we all have to balance how we use this space.
Yes sadly some have it worse then others… and at the beginning it was hard to read the bad and pain some have… it scared me when I first came here… but the people that helped me at the start of all my messs… gave me strength… perhaps paying it forward might help someone else now…
I will omit I am having hard time shutting off my thoughts after my last sezure… as my friends tell me i am starting to lose my short term memory… so some panic set in… thank you for this site… people around me dont understand my struggles… adding stress to them for answers is not right so i remain quiet… but have need to vent without causing stress to loved ones… doctors only say take this pill see you next year. I am still trying to find the best path as meny of us are doing…