I’m Julianna and am 27 and currently live near Joint Base Lewis-McChord in Washington state with my husband and son. I’ve experienced AVM-like symptoms throughout my life but remember a horrific migraine that put me in bed for 48 hours and an instance of facial paralysis on my left side as well as “ice pick” headaches (as I’ve read them termed here.) I wasn’t able to put the pieces together until delivering our son in January; I experienced a seizure before birth and a second one after he was born. He had no complications and was/still am very healthy. I had my first angiogram two weeks ago today and am awaiting the results for treatment. I was wondering if anyone’s located near the Seattle area? I’d love to learn more about AVMs (mine is deep in the right side of my brain) in general and meet with anyone who can understand how this impacts daily life. Depression can be a key player and my husband sometimes has a difficult time understanding all the AVM encompasses and the difficult days I can have. I bled out twice after the angiogram as well and have a large, hard lump at the incision site. Is this a fairly common thing? I’m looking forward to confirming treatment as well as building a support community with you all, thanks so much.
Hello @jscott I am so sorry I dont live near you I am near San Francisco. My husband is from Seattle area and it is beautiful. I hope you can meet with someone locally. Even when family like mine is supportive they really cant understand what it is like to live with 24/7 head pain and to deal with the sounds and not be able to sleep etc. I am sorry you are not getting support.
I did have some bleeding after my first angiogram during discharge I guess the dr forgot to note they had me on blood thinners during surgery but it was not a bad and only ruined a new shirt I bought.
This site is very supportive. It is very scary and I personally I think the first year is the hardest because you are questioning every new pain or sound or feeling . You know your body so dont second guess yourself. having an invisible health issue is hard because we can look fine and people have never heard of AVM but if you say aneurysm then they say Oh no poor thing etc! If you are having pain please ask your dr to be referred to a pain clinic. I got horrible occipital pain after my first angiogram - my incision site in my groin healed fine but was sore for some time. I did wait a few years in between my next angiogram. Hugs Angela