Hello from a ruptured AVM survivor

Hello. I can’t believe it took me 3 years to search for a support group, when some of you find this place immediately after discovering your AVM! I’m appreciating your stories. :slight_smile:

I’d like to introduce myself. In March 2022, I unexpectedly suffered a stroke due to a ruptured AVM in my right cerebellum. I went to an excellent neurosurgery center, where the AVM was resected during a craniotomy. I’m now considered “cured.”

Since then, I’ve been really grateful for how much my baseline fitness and relative youth have helped my recovery. I will say that I recently have realized that the “full recovery” I was promised is not the “full recovery” I was expecting. I know this is a factor in my struggle with how to define my health. And the times when my symptoms are worse, I feel like I’m regressing, and like I’ve wasted the various therapies I’ve had. But overall, I continue to improve, little by little.

I have recently found acupuncture to be a huge help with my fatigue. I finished my first course of acupuncture a little over a month ago, and I hope the benefits will last another month or two!

I have a couple questions, though maybe they have already been answered somewhere.

Do any other women feel their symptoms worsen in the premenstrual part of their cycle?

Is it common for AVM survivors to get headaches after light/moderate exercise?

Thank you for reading. :folded_hands:

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Hello!
I also had a rupture two years ago from an AVM in my right cerebellum.
I’m finding your questions very interesting as I had the same ones too!
Every month 2-3 days before my period I get some kind of headaches that the pain starts from my back,through my neck and reflects the pain at the lower back of my head,I only noticed them after my rupture.
As for the exercise,I only do walking as I’m in my radiation treatment period and have to be careful, but same pain as I described before happens when I’m very tired or worked a lot etc…