I found out about my AVM in 2013 when i was 46. I was at work when i collapsed and had a seizure. I has the following tests, CT, MRI, Angiogram, and functional MRI. After all these tests the nuerosurgeon said it was not operable and gamma knife was the way to go. So i went ahead and scheduled it, but a few days before the procedure i went for a second opinion and this surgeon said it was operable. Once i heard that i sent my films to one of the best nuerosurgen’s for a 3rd opinion. He responded in 48 hours saying he could remove it. I cancelled the gamma knife i scheduled the surgery. The main reason for going this route was that i did not want to wait 3 years to see if it worked.
The procedure for me was 2 days of embolization (gluing) and the 3rd day was the removal. It was successful, but i did lose a little of my peripheral visio. Initially it was about 50% but over the course of a few months i regained most of it back. I would say that i lost about 10 to 15%.
The one thing i would suggest is to get a 2nd opinion. I would also ask the doctor if you could have more some more temporary loss of vision due to swelling after Gamma Knife.
LOL. That’s funny, you can put what ever you want Matty, personally I’m
going on 29 years post surgery, (left temporal) only more recently have I
begun to have issues again, I am fairly new here and really wish I would
have done this sooner, take care, ( heart )
I’ve not had anything yet. Discovered my AVM through Googling last April, got to hospital in August and have just got a date come through for an embolization this April.
I don’t have the embolization down as something to be scared of. Sure there are risks but there’s risk in crossing the road and I do that a dozen times a day.
Hang in there and dont worry. The time to get fixed can be longer than you’d like but if they thought you were in immediate danger, they’d have you in ASAP.
Hi Matty, I’m Martin also from the UK and my AVM came as a surprise to me when I woke in the hospital, Didn’t know where and how I’d got there, But later found out Brain haemorrhage was the cause as I passed out from vomiting in my bathroom and my wife called the ambulance when I was unresponsive (kind of she said it was like I was acting drunk ! this was Dec 31st 2013) Anyway I woke after having open brain surgery and just told the nurse you need to phone my wife and tell her I’m here and why I’m here, Didn’t care at that point myself lol, I went back to sleep and was home 2 weeks later. I’m 40 years old at the moment so we are similar in age and both UK, What I’ve learned as a long term moderator here is that most of the stories here are success ones and also that life changes for the better normally after an AVM, That may sound weird but I know I’m a much stronger person now mentally and nothing really phases me, I am not materialistic at all now and as long as my family and I are healthy and happy then that’s all that matters in life , I’ve said this in last reply to your other post but try not to worry its not all doom and gloom, You WILL be fine, Take care
i am 45 years old. looking back i this my partial vision has been going for a while, but i noticed it most at Christmas just gone. I struggle reading emails or were i first noticed it was playing a quiz game, i felt stupid not being able to read the whole word in a sentence then not seeing the end of a line and starting the next so missing out the words on the end of the line.
I can watch tv and see 2 people facing me talking away ten i move my head to the right and realize there are 3 people on the tv. The powers that be eye specialists and the neurosurgeons all agree that i have to much pressure in the left side of my head and it put pressure on the information traveling from my eye to the back of my head where its processed.
Hopefully, after the knife my eyes will improve, other than my eyes i have no other problems except me worrying, i worry like hell.
What about you, 26 years on and going strong. well done are you living a normal life.
Sorry about your eye issues, but in time, I hope things will IMPROVE! I am
no ‘Holy Roller’, but what I learned going thru my medical madness way back
when, I DID get more Spiritual, and THAT kept me going…and
going…and going! Please try that, and you watch and see. Maybe you
have, already? If so, very good luck to your future!!!
I just knew that there was a risk of it bleeding again and since it was weaker the chance was greater , I also knew that I was a lucky man to survive a brain haemorrhage and be perfectly fine after also as I see others in my ward that were not so lucky. So I done some research and found the 3 treatment options I wanted anything but surgery again, but that’s the method the neurologist said was best for me , at the time and I thought what’s the chances of the same person pulling through 2 brain surgeries with no lasting effects??, but brain surgery in a controlled manner is just different than in emergency situations sure there were complications but ultimately I woke later that day with my wife and parents there and everything was ok , you will be fine no matter what Matt, keep telling yourself that over and over and don’t let doubt creep in !, take care mate
Hi Matty. I’m Lulu and I’m in the UK too. My AVM showed itself when I was 14 and it caused another problem. But it has not ruptured and I I am 43. Its in a difficult place to get to though and treatment would be risky. My symptoms are actually very manageable though so I have chosen not to pursue treatment so far. I know the thought of AVM is really scary but believe me it isn’t necessarily going to bled. I heard that a lot of AVMs are only discovered during postmortems and the person was never aware of them. Living with this is my choice though and you must do what is best for you. Despite all the experiences here the only person who can really tell you how to progress now is you. Best of luck with whatever you decide.
Wow 14 diagnosed and now 43. that’s great news, and it’s good of you to tell me some of your story, i have been panicking and worrying a fair bit and its only been a few months for me. You must be strong like a lot of people on here, i am very soft. i keep thinking about having a seizure when i am out or when i am driving or when i am with one of my kids in a place away from home, what would happen… told you i was a worrier.
Yeh i heard some people go all their lives without knowing they have AVMs and people like you know about it and live with it.
Can i ask your symptoms. mine as you might have read are my eyesight.
Thanks a lot for saying I’m brave. But truth be told it doesn’t really feel like that. Underneath I’m just as scared as everyone else. And I’m a bit of a worrier too. To be honest I just try my hardest not to dwell on it too much. It takes a lot of practice. But I do make a definite effort to concentrate on the good things in my life. I’m always aware I have an AVM but have just kind of accepted it as part of me. I try not to let it define me but it is part of who I am and I feel it would change me if it could be removed. Hey sorry, I’m getting a bit deep and meaningful now aren’t I?
I agree that thinking about all this can be really scary. And like you I occasionally think about where/when I might have a seizure or a bleed. But I think you could drive yourself mad pondering it. So I tell myself not to do it too much.
Luckily for me I don’t really have many symptoms, not day to day ones anyway. Maybe its therefore easier for me than some to ‘forget’ about my AVM. One issue for me is balance. That’s cos my AVM is in my Cerebellum. I can walk but I’m clumsy and get light-headed if I turn my head too quickly. My other issue is secondary hydrocephalus with is recurrent and rears its head every few years - I have a VP Shunt for that.
, I’ve said this in last reply to your other post but try not to worry its not all doom and gloom, You WILL be fine, Take care