Have you had the COVID jab with an untreated BRAIN AVM ? Experiences pls so I can make decision & see the numbers

I would love to get some idea of how many people with untreated AVMS have had the COVID vaccine.

Which brand of vaccination did you have ? Pfizer, AZ , Moderna
When did you have it
What symptoms did you get
any helpful advice on what to do after vaccination for keeping fever low , headaches etc

Thanks for replies

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Reb,

I don’t quite qualify with your request, but some thoughts anyway.

I’m not “untreated” (I lost that title 43 years ago) but I’ve never had a bleed.

Pfizer

March of 2021
First night of first shot, every joint was achy. Other than that, felt a little cold and a little more tired than normal, that was it.

Tylenol and fluids - and clear that with your neuro doc first.

Hope that helps,

TJ

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I had Pfizer and my fully vaxxed date was 4/23/21. The first jab I had no symptoms except my arm hurt. The second jab I had a low fever and headache for about 12 hours. This was before I knew I had a brain AVM. I found out I had a brain AVM on 6/17/21 after two abnormal severe headaches and my GP insisting on a brain CT. In a matter of days, new words like “nidus,” “embolization,” and “Barrow” are now in my lexicon.

I am pro-vaccine. However, there is new research that will be published in the journal Neurology titled “COVID-19 and Vaccination in the Setting of Neurologic Disease: An Emerging Issue in Neurology.” I am still in the consult phase for taking care of my AVM. But I am asking my prospective neurologists/neurosurgeons about the feasibility of getting a booster given the conclusion of this paper. Covid is not just a respiratory disease–a fact which is not popular in the mainstream media other than in descriptions of “long-haulers.” I want neuros I will deal with to have knowledge about how Covid and Covid vaccines interact with our brains and AVMs. Tough sledding because it’s probably too early to tell.

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They tried to treat me almost 15 years ago by embolization for my brain AVM. Did not work at all. I’m fully vaccinated and had Moderna both times. Nothing more than a sore arm. I am still living with my ‘untreated’ AVM. Had some Tylenol on hand but did not need to take it. I had my first on May 19 and my second July 20.

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My AVM bled in 2013 and 2018. I got the 2 Moderna vaccines and had no problems whatsoever.
It was a great relief to me to have that protection.

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The uncertainty of the vaccine and AVM’s is definately something that worries many of us… I had my AVM removed in 2011 and I have concerns about the potential history I had around this as I did suffer a bleed and concerns about seizures as I am seizure free… I am scheduled to have the Pfizer shot but hold much anxiety about it… I think its healthy for others to share their experiences as it may ease some anxiety for others… God bless!

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I have an untreated left frontal lobe AVM. I have had one seizure back in 2015, been on Keppra 500mg x 2 per day. I had the first Pfizer dose in May, the day after lethargic and just stayed home. The second dose I had in June, sore arm, lump on my arm, general headache, lethargic again for a day or so. Probably nothing out of the ordinary. Hope this helps:)

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Thank you for asking this question!. And thank you everyone who has responded. I am completely conflicted about whether to get vaccinated or not. I am on here to find out what other people in my (our) shoes are thinking about the vaccines.
My brain AVM was found by "accident’ but I still had symptoms. I am not “untreated”, as I had two embolizations in 2012 and one gamma knife in 2013 because surgery was not possible. Therefore, my AVM is still present and I have to get regular MRI check up to make sure that it is still stable.
I would like to see the research mentioned here to be published in the journal of Neurology, yet I am getting LOTS of pressure from my family and employer to get the vaccine.

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Hi thanks for reply & can you copy & paste the conclusion for us all please . I hope to keep this thread going so people can see some real world data coming through in relation to vaccine and also studies for our unique positions.

Yes I hope to keep this thread going for awhile . Thanks for reply

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Im in the same boat completely conflicted … I feel like the risk is 10 fold for us regardless of vaccination or not … We now also have the boosters, which will raise even more questions

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I still have my davf and prior to my davf had 5 blood clots in my brain and had cvst stroke so both my pain neuro and my heart doctor told me not to get the vaccine. Plus I have loads of allergic reactions to medications including shellfish . I have no other conditions.
I am keeping a small pod of people and maintaining a strict outdoor if I meet up with friends etc only policy except when I go grocery shopping which is once a week.
I wasnt keen on doing an MRNA vac so I was going to do the J&J but then they had the blood clots and bleeding issues. also there was a dr in Florida who had both blood clots and bleeding issues from the Pzifer and he died and was only in his 50s so its just not J&J that does it.
Angela

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COVID-19 and Vaccination in the Setting of Neurologic Disease: An Emerging Issue in Neurology

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I have a friend in her 50’s who also had Pfizer and had a brain bleed as well. Fortunately, she survived. I am not an anti vaccine person, but this makes me wonder if there are more people experiencing blood clots and bleeding issues than we are led to believe. Good luck to you.

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My AVM bled 11/30/20. It is inoperable due to location. I got the Pfizer vaccine after being discharged from the hospital mid-Feb. 2021. No symptoms after first shot. After second shot, achy and exhausted for 12 hours. Just slept and then was fine. I never had fever.

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As a hospital worker, I was fully vaccinated with Pfizer in December 2020, prior to knowing I even had the dAVfistula. No side-effects with 1st shot. 2nd shot a bit of sore arm and a fever the next morning. One dose of Tylenol and it never came back. After seeing so many patients suffer and die with Covid in the hospital, the risk of disease is so much worse than the risk of immunization. I’m glad I got the Pfizer as people I knew (including my daughter) had more side-effects (just headache, feeling kind of crappy, but nothing that wold stop one from getting it). I might skip the J&J because of the possibility of blood clots, though the incidence was low.

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Hi, i have untreated AVM with small bleed six months before vaccine. Had AZ jabs, no reactions whatsoever. UK giving boosters shots September this year to all of us oldies, I’m 68. Sorry, not sure what your location is so forgive me if you are UK resident and I’m teaching my grandmother how to make Bolognese sauce! My husband who is 50, (grabbed that one quick girls!) has brain injury due to trauma when he was 13, had same jabs as me, again sore arm at jab site but no other problems. Neither of us hesitated for one moment to get jabs but we all are different and we must make up our own minds. It’s a big decision to make and we all must draw our own conclusions. Hope this helps even if it helps just a little. I feel your pain, much love and hugs Pauline

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Sorry left bit about keeping fever low and headaches, we both too something called Zapain which is paracetamol and codeine mixed. Worked wonders. Love Pauline xxxxxxx

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I didn’t see this mentioned, but COVID often causes blood clots, pretty extensive and disastrous ones that cause strokes, organ damage, and loss of limbs. It has something to do with interaction of the virus with the linings of the blood vessels. Because of this, part of the standard protocol for hospitalized patients is the use of blood thinners.

However, due to my active AVM, forget anticoagulants–I’m not supposed to take any medication that interferes with clotting, even NSAIDS like ibuprofen, as it raises the risk of another brain bleed. Something I sure don’t want to deal with, especially along with a COVID infection. That means if I were to get seriously ill with Covid, the doctors would have to balance the risk of one kind of stroke with the risk of another. Not a position I want to be in.

With millions of people already vaccinated, we’ve got a pretty clear picture of what the relative risks are between the vaccine and the infection. It’s not even close, in my mind, especially given AVM status. A Covid infection is potentially disastrous and the vaccine can prevent it.

For the record, I didn’t have any side effects from either dose of the vaccine, maybe a very slightly sore arm if I thought about it. Apparently that’s the usual reaction. My spouse had a fever for maybe two hours right before bedtime and woke up fine. My college age kid got really sick for a day or so, muscles aches and fever, but the next morning he went rock climbing. He’s ready to be first in line to do it again for a booster.

Regarding anxiety: after my second shot, I surprisingly felt like a weight had been lifted, one I’d been carrying for more than a year without even realizing it was there. That low level stress about inadvertently getting the disease was gone. Even more important, I was able to be with family at my mother-in-law’s funeral early this summer, and since all of us were fully vaccinated, none of us were worried about inadvertently giving someone there a potentially fatal disease.

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Do you mean covid can or some of the vaccines can cause CVST stroke? In the case of the vaccines, I don’t think it is fair to say “often”.

As you say, the balance of risk v benefit seems favourable.