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AVM Survivors Network

Avm gone?

Hello, in Feb 2020 I had an awful headache. I went to the hospital where it was discovered that I had a small bleed in my brain. I was seen by a reputable neurosurgeon and after some tests was diagnosed with an AVM in the ambient cistern near the brain stem. I opted for surgery and was scheduled for an angiogram and possible embolization of the area in question. The surgery was scheduled at the end of March 2020 however on the exam table I was told that there was nothing to operate on. Now I seem to be left with more questions as I’m not sure whether it was a true AVM, and if so, can it just disappear? Can it come back? A lot of people have recommended I get a second opinion. Overall I do feel better. I have occasional headaches and odd sensations but it’s hard to tell if it’s related to the AVM or not. I’ve now started to get into a heavier workout regime but I don’t want to go too hard or do something to make it come back.

My question to the community is, has anyone ever experienced something similar where an AVM disappears on it’s own without treatment?

Hi,
I have never heard or experienced an AVM disappearing. Perhaps you were misdiagnosed, or the AVM for some reason did not show on the angiogram (if it is really small). Do you have any follow-ups with your neurosurgeon?
Again, I haven’t experienced an AVM disappearing and then coming back, but I had an AVM removed and then grow back a year later (I’ve been told this tends to be more common in anyone under 25). It is also likely that my AVM did not regrow at all, but simply a residual AVM did not show up in the angiogram I had after surgery but became visible on my angiogram a year later.
I wish I had more helpful information, but I hope this helps in some way.
All the best,
Ella

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Hi!

Welcome to AVM survivors!

I agree with Ella that it is possible that your original diagnosis was not correct. The angiogram is the best way of seeing what’s what – much clearer than the MRI – so is more trustworthy than the MRI.

I’d say you could do with an explanation from the doctors as to why they believed something was there but not now. If you can get hold of your MRI and angiogram imagery, you might get a second opinion. Some of the major US neurological institutions will do a remote second opinion for about $200.

Meanwhile, if you think you may still have an AVM, the main self-help things you can do to keep any headaches at bay are to not spike your blood pressure: I was advised to cut out coffee, smoking, alcohol, chocolate – anything that will push your blood pressure up – and go easy on the exercise or straining of any kind. So, if you’re really going for it in the gym – pushing big weights – it might be the right time to think about a different regime that still gets the endorphins going without straining, at least until you can get a good “all clear”. I find it remarkable how many AVM patients seem to do big weights in the gym: there must be a correlation there.

Very best wishes,

Richard

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Thank you both so much! I am scheduled to see the neurosurgeon again but it’s not until June and he’s likely going to do another diagnostic exam like an MRI to see if the area has gotten any worse or stayed the same. I will get ahold of my initial results and see about a second opinion on the meantime. I appreciate the input!!

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