Newly Diagnosed Brain AVM

Sorry that you also have AVM. I was also recently diagnosed (almost 3 weeks ago). It’s scary, but let’s pray we’ll get over this. I hope everything goes well with your treatment Bebs. Take care!

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I went to see the neurosurgeon today. Unfortunately, his clinic wasn’t able to open and see my CT angio imaging on cd. He did order a brain MRI, while he tries to access my CTA imaging. Based on the CTA report, he thinks mine may be treatable with gamma knife, but he wants to do an MRI first, and more than likely a cerebral angiogram before making any diagnosis, and treatment plans. Thank you all for the support, it helps me tremendously. I send you back healing vibes!

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Hi John,

Yeah it was scary but i offer everything to God. Yes i am going down to Vancouver alone on the 15th actually then they will admit the next day early in the morning at 630 for the first procedure. I am praying that everything will be fine.

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Hi Maja: Welcome to the best group of AVM-ers in the world! We are here to support and encourage you as you go through your AVM journey. As you can tell, we willingly share our ups, downs and successes. My AVM journey will be 6-years old next month, and I’m very much still in the fight! My AVM in my Cerebellum ruptured in 2014. I had never heard of an AVM until after I came out of my coma and had it explained to me. I had Gamma Knife Radiation as that was the only option open to me due to the location of the AVM. My life has changed at lot since my diagnosis. Some of the changes have made me a better person. A more caring, empathetic, calmer, less judgmental, and a more loving person. It’s a learning process. I wish you the best on your journey, and I give you my recipe for moving forward one day at a time, P&P (Prayer & Patience). Again welcome to the group.

Sharon D…

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Mine was left temporal that I had no idea existed until it bleed in May 2016. I hd gamma knife in November 2016 and received the news of obliteration in February 2019 following and angiogram. I had most issues due to the bleed and after with symptoms slowly subsiding. I am pretty good now, no complaints! Th memory is not quite what it was, but overall I’m lucky. Take Care, John.

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We are with you, so know many of us are beside you in spirit. Hopefully the plans all work out with travel, keep us in the loop. John

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Hi … I’m also going to have some kind of avm surgery at VGH in Vancouver. It was ENT who ordered my CT because of head buzzing and whooshing which discovered 2 arm! The advice I have had from him - “ absolutely no running.“ And from a surgeon of a friend -“ lay low“. My first appointment with surgeon is in 3 months !!! I know nothing other than what’s on-line. I have managed to get a copy of my CT report that might as well be in Greek! Going to see GP for translation hopefully. Wishing you the best. Can u keep in touch? I’m new to this forum so haven’t figured it all out yet. Nancy

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Actually a decent proportion of it probably is in Greek but I know what you mean. It’s definitely better to talk to a doctor that speaks the mumbo jumbo than try to translate it yourself – way less worrying.

All the best!

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Hi … I’ll be seeing Dr Haw too at VGH … only 4 more weeks to go til my first appointment. Feeling pretty good ! !

Nancy

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Hi Maja,

Sorry to hear about your diagnosis but please if i could say one thing it would be that there is light at the end of the tunnel… everyones journey is different and healing does take time BUT there is always someone out there much worse… one time a doctor told me it was better to have an AVM than be told you had a brain tumour, which I couldnt disagree with… just know you are not alone and we are here for any questions or support… God bless!

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Hi NMc,

I had a very successful craniotomy at Vancouver General Hospital almost two years ago (different neurosurgeon). Feel free to private message me if you wanna chat.

Hey congrats - that’s awesome!

Turns out my AVMs are very “healthy” so I’m
Not going to have surgery. They were discovered because I have two types of tinnitus and the very worst type has nothing to do with AVM so no treatment. The other type, pulsatile, is improving due to a beta blocker !

I’m going to go to St. Paul’s for some auditory testing to see if anything can be done re the noise - it’s really awful.

Thanks for emailing me !

Wishing you continued health!

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