MRI shows AVM has gone!

You can try what I did Gill. After 6 years, I experienced symptoms that I had never experienced throughout and I looked for a second opinion because according to my doctor I was AVM free and there was no sign of growth and so it was all in my head then? Or what?! (That’s how I felt at least lol) well turns out the 2nd opinion told me the same thing my doctor had been telling me the past 6 years lol and that it must be scar tissue (yaaay~) so if you feel like you need reassurance to consider yourself avm free by seeking a second opinion I say go for it. And you know what that 2nd doctor told me?! Wow!! Whoever embolized you did an amazing job. That made me feel so much better :slight_smile: so sometimes although annoying having many drs probing our brains lol having a little double look for assurance does a big help (at least in my book) I already consider you avm free :slight_smile: :+1:t3: so congratulations

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Hi Tiery. Congratulations to you too, thank you. That sounds like a great idea, thanks.x

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I refused the final angiogram in 2016. I was 20 at the time. The AVM grew back and bled in 2020. I don’t know if I’ll go for the final angiogram in a few years. I’ve had three gamma knife surgeries and two failed attempts at embolization, so I wouldn’t have any surgery options left if the AVM isn’t gone.

That’s interesting to hear your doctors still saw a vein a year ago… That’s exactly what my team is saying now, and it’s been almost three years since my last gamma knife. Your story gives me hope that my AVM is still dying; thank you!

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I’ve had both done. Because I have a tiny bladder and really struggle lying flat for 6 hours during recovery from a groin angiogram, I requested an arm angiogram for my third Gamma Knife.

Hi Hermione, thank you for replying. I’m so sorry to hear your AVM grew back and bleed, thats awful and you were so young.
In 2016 , when you didnt have the final angio did the MRI/A showed it had gone?
My small vein had been there for 3 years! It got smaller every time I went and i waited patiently for 6 years so I’m sure yours will do the same but hopefully quicker for you. X

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Yes the MRI in 2016 was showing it was gone. It was a very small area they treated in 2012, 0.5 mm by 2 mm I believe. So I had a lot of faith that it was destroyed. But because I was so young, my body wasn’t done growing and it returned.

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Hi Hermione, that’s so sad you poor thing. Did they not do yearly MRIs to monitor you? I think its important they keep monitoring us all.

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No, they stopped looking after 2016. I had switched from a children’s hospital to a neuro hospital around this time. I literally had my last MRI at the children’s hospital in 2016, when my doctor suddenly realized I had aged out of his care. He booked an appointment the next day to discharge me, then my care was transferred.
The new team didn’t make much of an effort following up with me, other than offering the final angiogram. I’ve had the same doctor for the Gamma Knife through all of this, regardless of the overseeing hospital, and right now I only have communication with him rather than with a neurologist.

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From what I know gamma knife does take time.So stay hopeful my friend. I am sure it will s
Work just slowly but surely. We just have to let the doctors do their thing since they know what they are doing. I will stay hopeful that your outcome is that of a positive one. Lord knows we all need one, been born an AVMer is not easy we all know that.

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Hi Hermione, that’s not good. I hope they are giving you yearly MRI/A now.

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Yes they are. Although I am the world’s worst patient; there is nothing I hate more than needles and my doctor is again requesting contrast dye at every scan. Dealing with the trauma of that is its own battle.

At least they put me out for angiograms (at my request); I had one awake and it was absolutely horrifying. I was 24 and it was a few days after my second bleed; I had no idea they weren’t giving me laughing gas.

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Yes angios are terrifying! But I think you are amazing!

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This is awesome news… I personally think getting that confirmed through an angio is the gold tick… please keep us posted… God bless!

Thank you Adrian