Hello everybody. My malformation was diagnosed 6 years ago as a VM. I’ve had sclerotherapy for it. My question is has anyone consulted with their specialist about how covid 19 effects their AVM/VM? I was approached to participate in the vaccine phase 3 trial and was considering doing so but am probably going to opt out, one reason being my VM. Got me thinking both how the virus would effect me and also how the vaccine could effect me.
I asked my neurosurgeons about mine a bit - they just said it would make it more rough since I was just getting over my embolization & every procedure weakens the immune system
Otherwise, I’d say consult a neurologist
My primary care doc, my neurologist, my therapist, and my pulmonologist have all said (and I asked them about every 6 to 8 weeks) that my AVM and all of the side effects make it significantly more likely that if I were to get the virus it was be a severe case.
So I’m being very careful and staying at home. I might make a quick trip to the grocery store, otherwise any time I go anywhere, it’s typically, I’ll stay in the car and let someone else go in - or I’ll get it from Amazon…
I’ve seen some things around the Association of British Neurologists dated back in March. My recollection (without re-reading) is that the main risks are associated with reduced immune system (or a condition like MS where the immune system is actively attacking the body already) the pulmonary system (and possibly swallow function, which looks like it would definitely affect TJ) or neurological conditions like cerebral palsy.
Have a look at the links in the story below and make your own judgement, or talk to your surgeon. My understanding is that you have a maxillofacial VM. On that basis, my assumptions are that if your VM or past treatments have an impact on your breathing or swallowing (e.g. use or function of your tongue) or your brain, or your immune system in any way, it would definitely be something to find out more about before running ahead.
Hope some of this helps,
I’ll throw something in here too as I was also looking at this. And from my reading and talking to my drs… since its a vascular disorder as such and covid is turning out to be a LOT more severe (sometimes) and long lasting even in young people than they first ever thought… they said stay away from trials and do your absolute best to not get covid as it could be devastating
No alarm - Just repeating what I’ve read and been told
There’s a lot more bad things they are finding out from covid as they go and they ain’t good… including lasting severe brain deficits (in previously healthy young adults). Just Google a reputable news or govt health site and you’ll find it there too about how some “mildly” affected people are turning out very bad months later