MRI shows AVM has gone!

Hi lovely group. I just wanted to share some great news and ask for some advice please.
After 6 long years my AVM has finally gone from the MRI! I’m so happy and grateful.
Last year the MRI and angiogram showed a 1mm vein was still there and that has now gone from the MRI.
I have to now decide whether to have another angiogram(which I dread) for final confirmation, or to be discharged. My question is who has decided not to have the final angiogram and if you didn’t are we able to say the AVM has definitely gone without the angiogram?
Thank you. Gill.

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Ps I had gamma knife 6 years ago

Gill,

I’m not going to answer your question but I just want to say that I remember you going through the agony of choosing whether to do, what to do about your AVM and it’s a fantastic thing to learn that you are (as far as we can tell) AVM-free! :partying_face::champagne::confetti_ball::sparkler::balloon::tada:

Personally, I questioned whether I was fixed for two years post embolization. The main route to getting better for me (other than the op itself, which was clearly pivotal in my case) was to simply put the whole experience behind me. Whatever you do, I recommend you put it behind you and just, in the words of my consultant, “resume normal life”.

Congratulations! Party on!

Richard

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Hi Richard, thank you, you made me smile. I think you’re right, i should put it behind me and party!! X

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Great news Gill! John.

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Thanks John

The news we all want to hear! Such a blessing that you received Gill. Congratulations!!! @gill1

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Great to hear Gill.

Merl from the Modsupport Team

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Thank you Dageris.

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Thanks Mel.

6 posts were split to a new topic: About Angiography

2 posts were merged into an existing topic: About Angiography

What wonderful news! I can’t advise what to do only share my son’s experience. His neuro team did one angiogram at the beginning of treatment then he had CyberKnife then each year after (4 years total) he had contrast MRIs to show the progress when the last MRI showed no visible trace of the AVM they performed a second angiogram to show that it was completely gone. What does your medical team say? Really happy about your terrific news!

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Hi Kelly, thank you, that’s really helpful to hear and congratulations to your son too. The dr said he would do an angiogram but that it’s up to me. As the last angio showed no niduus and only this tiny vein which the MRI/A now shows is gone, I’m hoping thats good enough to confirm it’s gone as I really dont want a fourth angio!

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Buzzing for you :raised_hands:t2: live your life to the fullest

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This is super news. Congrats. I understand that angiogram’s have changes a little and they no longer put the fluids through the groin area. I think they go through the arm This might make a difference to you. I know it would for me.

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Thank you Shpat

Thanks Tsparky. Im still worried about the risk of a stroke or other damage though. I wish I was braver!

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Gill,

Honestly, I believe the best thing you can do for yourself is to believe the doctors and decide you are fixed. If that needs you to have the final scan, then maybe that’s what you do, but I can tell you from my own personal experience, the only point at which I “moved on” was when I decided to just go with the outcome of “fixed”. There’s definitely a big mental approach thing to it all.

Now, I don’t know if my fix will last forever any more than you know if your fix will last forever but I ignored any minor twinges and took them as minor twinges. I’m now 6¼ years post op and I’ve definitely stopped actively worrying about it for at least 3-4 years. It’s behind me. If it does something noticeable, fine, I’ll talk to the doctor, but in the meanwhile I’ve got all of the challenges of health in one’s late fifties starting to make themselves known, so life just has to be got on with.

As always, take anything from what I say that helps and ignore anything that’s too strong for you or doesn’t fit. I’m very keen on how I feel I moved on but I know everyone’s different.

Lots of love,

Richard

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Hi Richard, thank you for your kind words, I am definitely starting to accept it and move on. It is interesting though hearing if others have also decided not to do the final angiogram once their AVM has also disappeared from the MRI/A. Thanks. Gill.

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