Disappearing AVM?

Hi I have a question?
My son Zach had an AVM rupture he was in a coma for 20 days last may comeing up on 1 year anniversary. While in Induced coma it was embolized with glue sooo we went to the neuro and he said it was dissolved meaning GONE wow he said this is very rare that surgery was not needed has this happened to anyone else the only info I can find on this statistics is unruptered not ruptured.
We are counting our lucky stars if this is true unfortantly Zach is still working at his left side deficit as a result Thanks look foward to any answers jen

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Hi @ZachsMum

I’ve read of one or two people in the last 5 years who’ve said on here that their AVM spontaneously resolved. So, I think it’s possible. I think it happens very rarely.

I’m not quite sure what you’re saying because you say Zach had an embolization but maybe he was due something else as well? What was his treatment plan?

I hear you that he’s still fighting some one-side deficits, so I hope that carries on getting better. I believe this can continue to improve for years.

Very best wishes,

Richard

Very interesting,

Disappeared, as in gone?! Or - Resolved & completely occluded?

Since he had an embolization, there would still be a copolymer cast - right?!

Interesting, def would love to hear more

The more gone the better - that is what I do know

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It is rare (but then so are brain AVM’s) Intrestingly enough most uterine AVM’s self resolve There has been a lot of study trying to find out why. Then they started studying brain types that self resolved. Te result has been for certain types especially thoses considered too risky to treat, they have come up with some things they can do to encourage self resolution. There is a ton of stuff out there but sadly nor in one spot. Here is on study that explains a fair amount.

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Wow, that’s a heck of a read

Very very interesting

So the AVM actually resolves itself - but, I still can’t quite make sense of what happens to the physical presence of the copolymer cast within the vessels

That’s definitely something tho - again, the father it’s gone the better

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hi DickD,
his AVM ruptured causing seizers and had to be in an induced coma but whilst this was happenig he has lot’s of brain swelling from the rupture so that caused two anyerusims sorry spelling then they were able to do the embolization to the AVM to stop bleeding and a year later they were thinking surgery to remove the AVM but, it looks to be gone . He also back at school year 12 this year:)

Jennifer

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@ZachsMum my AVM is a DAVF and was caused by a rare CVST stroke ( 5 blood clots in my brain ) the kind that the Johnson and Johnson vaccine is causing - back in 2011 - I then had my first angio/embolism in Jan of 2012 when they found feeders but it was 7 hrs surgery and I had another stroke. Drs wanted to go back in another month or two but I felt like I my brain needed a brake and I needed to go back to work or I would not have health insurance. Then in 2015 I was afraid my dr was going to retire- but when they went back in they said many of the feeders had sealed themselves and the few that were left if they did touch them I might get paralyzed and I had already been paralyzed and regained my movement back twice so we are in the waiting game right now. They told me it was rare that it would happen. I have only read about one other person. I think his name was Mark and I think he was also at Stanford like me. I am so happy for your son and for your family . This is wonderful news!
hugs Angela

My reading of the article that TJ attached is that it is the brain swelling that has been the magic ingredient in his auto resolution. So it makes sense that it is really gone.

A.maz.ing!

Well Zach had so much brain swelling after embolization the anyuerisms happened well he was really bad thought he was not going to make it but the swelling was becouse teenagers have less space in the skull with the bleeding nowhere to go they had to cut open the skull and had 12 drainplugs in his skull so maybe that was the reason? I did glean that from the article but is it provern?
Jennifer

It’s a proper academic paper. I think it’s sound, so it does indicate that Zach had at least that element present (the oedema) so finding that the remainder has regressed is a more solid basis than otherwise. I honestly think the article is very encouraging as an explanation of Zach’s case.