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

General
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The disease. It’s an incredibly dangerous complication. Covid puts your body in a “prothrombotic state”. Broadway star Nick Cordero and Italian footballer Mauro Bellugi rather famously lost their legs (Bellugi later died), but there are plenty of other anecdotal cases.

Anyway, here’s the NIH guidelines regarding antithrombotics for COVID:
Antithrombotic Therapy | COVID-19 Treatment Guidelines)%20(AIII).

There has been some concern about the J&J vaccine specifically in young women who were more likely to be taking birth control pills. I’m not sure if they figured out if it was an elevated risk after the vaccine or simply a reflection of the well-known existing risk for blood clots in that cohort. (All adverse events are reported.) The answer to that concern has been to give young women one of the other vaccines. Even so, the risk of an adverse reaction to the vaccine is much, much lower than the risk of debilitating consequences of the disease itself.

Editing to add: my college kid just texted us that he was assigned this shift to the COVID ICU at the large urban hospital where he’s been working this summer as a patient care tech. All the patients are in what he calls “rough shape”; none of them were vaccinated. He has tonight off on his schedule, so that means he was called in because they need more staff.

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I just saw this very cute, very good animated explainer of how the vaccine works. Less than one minute long!

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Thanks to everyone commenting hopefully we can keep this going so other members can also try & find the answers they seek. I feel like both vaccination & not vaccinating are big risks , but unvaccinated I believe will be even greater risk ATM. The whole situation is very stressful. i also dont believe there will be herd immunity anytime soon based on what i have seen which is also making me think that there are few options outside of vaccination especially if you live with others

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The message in the UK is that covid will be with us a long time, perhaps forever like flu. So the idea of trying to avoid it through self isolation doesn’t seem sustainable. When we had no vaccines, the only tool in the box was isolation so it was the tool to be used to keep people safe and the healthcare systems from collapse. However, now that vaccination is a tool available to use, I think it becomes the better, more sustainable tool.

It’s a difficult and personal choice if you are concerned about possible risks from the vaccine but I don’t see life locked away from others as sustainable and I don’t believe eradication is likely.

I had the AstraZeneca jab. The first one took it out of me somewhat and I resigned myself to bed for a day but after that it was fine. The second jab didn’t do anything untoward. I think it depends upon what infections you’ve met in the past as to how much your body has to catch up with the provocation that the jab gives it. Hence everyone’s experience of each jab is unique.

My AVM is still present, though it was filled with glue about 4 years ago, so I guess it counts as no longer there.

Very best wishes to everyone trying to make their decisions.

Richard

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Hello Rebe and all the wonderful members who responded to Rebe’s question.

Earlier this year, based on the medical knowledge and the political climate of the time, Ben’s Friends made a decision not to entertain discussions about Covid-19 or vaccines on its network of communities. We felt that any such discussion, given the lack of empirical, evidence-based information at the time would quickly and inevitably lead to rancorous discussion filled with blaming, shaming and fear-mongering. That would be far from the “safe and supportive” atmosphere that your moderators here work very hard at maintaining.

At the time, the Executive Directors posted this:

New members arrive at Ben’s Friends with lots of questions as well as having a need for social support. That’s why we’re here. But these days the really big questions on peoples’ minds are about Covid vaccines.

The advice we give here is friend-to-friend. It’s not evidence-based medical advice, even if many of us see ourselves as local experts in our own conditions. Opinions and advice about Covid vaccines is waaaay outside our area of expertise!

When we have questions about vaccines (and trust us, we all do!) we depend on the expert scientists and doctors who have dedicated their careers to the study of their specialty. Then we turn to the doctors who know us best. That’s what we advise you to do.

Look to Drs. Tony Fauci, Supriya Sharma, and Jenny Harries and their learned public health colleagues around the globe for the big picture. Then turn to the doctors closer to home who know you well, for the best personal advice that you can get. Because it IS the best.

Yes, we all have opinions, and gut feelings too, but it would be unfair to suggest that your decision be influenced by our (or anyone else’s) gut feeling, hunch or rumour.

So keep an eye on what the experts say, and when it comes time to decide what to do, ask your doctor. When it comes to a Covid question related to your rare condition, run it by your specialist. When I did, here was her answer: “I’d rather you take your chances with the vaccine than with the disease.”

And I’m going with that. Asking for opinions in a group of lay people is only going to confuse matters, and goodness knows the world is confusing enough as it is. Ask the docs.

Peace.

Since that “Head Office” decision was taken, the world of medicine has made progress, and things are definitely different than they were. It has been wonderful to watch this discussion develop into something not only constructive but informative. And all in a tone that is warm, respectful and supportive. Special thanks to those who posted the very interesting journal article!

Still, it was our decision not to “go there” on our communities. The time has probably come to review that decision, which we will do. Pending that, I’ve decided to close this discussion until moderators, moderator support and administration have had a chance to put their heads together and review our decision. We will post the results of our conversation here, and everyone on this thread will receive notification.

Wishing you all good health!

Seenie, co Executive Director
clasina@bensfriends.org

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Hello everyone

As you probably know, Ben’s Friends is a network of 43 communities and over 75K members all over the globe. It keeps things interesting! So when we make decisions like these it involves a large team.

As I said I would, we convened a meeting of moderators and administrators to discuss our policy and how to handle Covid conversations going forward. We’ve decided to leave the no-Covid-conversations memo in place, but to give individual moderators/administrators discretion about when or how to apply it.

So what we have here is a great, supportive conversation with people making really positive contributions. Why would we stop that? So I’m opening the conversation up again. Carry on! Meanwhile, your ever-wise moderators are there for your support and guidance.

Thank you for your patience! Being involved in Ben’s Friends is interesting and always a privilege.

Seenie

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2 posts were split to a new topic: Censorship: a slippery slope

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Also many Doctors just dont have enough real world data on our condition & the new vaccines so here is the place to get some , its doesnt mean that you will make a decision based on that alone.
I doubt there is any monitoring of how many people with out condition have had vaccines.
My Dr doesnt have a clue , there is no where else to turn. At least now I know people have had the vaccine & survived it . It makes no sense at all to stop this discussion

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It’s a good conversation. As you might expect I’ve been following it with a moderator’s eye because I know the subject treads close to a limit that the Ben’s Friends leadership team said “we don’t want to go here” but I felt it was a supportive and important conversation to allow to happen.

Then Seenie spotted it and put the brakes on slightly but we have reviewed it and discussed it as a moderator team and we agree that your worries are ones that are real and it seems important to try to support people with these worries. That’s what we are here for.

But if we start to get into the space that some of the public discussion forums (Facebook, Twitter, etc) have got into, with a somewhat anti-vaccine lobby versus a pro-vaccine lobby, we’ll have to close the conversation down. The rules of this site include that orthodox medicine is the foundation of treatment that we support discussion about and we moderate any diversions into homeopathic medicine etc for reasons of ensuring that vulnerable members are not diverted from treatments that the medical community believe work soundly. So moderation is only our way of trying to ensure that people in a vulnerable situation such as ourselves in this community are protected from some of the wilder and less evidence-based health ideas.

We are exactly here to support, which is why this conversation is going on, but it is also important to review some areas from time to time.

As I said a couple of days ago, I hope the conversation you started helps you and others to make the decision to get vaccinated (or not). In my mind, it is a balance of risk, the same way that deciding to have an embolisation or craniotomy etc is a balance of benefit and risk. And it is always a personal choice and often a difficult one.

Very best wishes,

Richard

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I’m not sure if you realized just how profound that statement is… I can assure you your Doc has a very GOOD academic knowledge of the condition. That clearly is not enough because he lacks the experience to develop a good decision matrix. That puts him and you (all of us really) between a rock and a hard spot. We can all develop some measure of academic knowledge, gather the numbers, read the studies etc. whether it is the condition (in this case AVM) a vaccine, or something else at the end of the day all we have is book knowledge which as you pointed out doesn’t go very far.

Your question as to what OTHERS with AVM have done in regards thrilled me no end and is what lead to our management discussion of opening up Covid vaccine discussion. Its not the numbers, opinions, papers etc that lead to a decision its experience (Its experience that ultimately guides the GOOD docs in their treatment or recommendations. and YOU. It ultimately is a personal decision where ever the road takes you and experience the best road map.

That’s why the Ben’s Friends rare disease forums exist. By patients sharing THEIR OWN experiences that experience knowledge base that is so critical to good outcomes and confident decisions by patients. It might be interesting though it was for Brain Aneurysm not AVM that we involved ourselves about two years ago with an open science project lead by researchers at Yale University commissioned by Stanford Medical to develop a treatment decision matrix for Brain Aneurysm based on Patient Concerns with patient interaction as the base data point. The researchers were amazed that what patients had to say and were MOST concerned with was almost 180 degrees different than what they thought. Ultimately a new matrix was developed that was patient centered and is now in use in many top of class neurosurgery centers across the country.

Experience matters. A point of information: what doesn’t matter is lay discussion of technical data. I’ll give an example (and I can see Seenie and Dick starting to pull their hair out) It was stated in a post (withdrawn by the author) that the Covid -19 vaccines are not Vaccines. He was 75% correct. The J & J is a vaccine The others Moderna, AZ etc are not) They are adjuvants. Adjuvants are biopharmaceutical products that stimulate the immune system to generate natural agents and signals to prevent and treat human disease. With them we have multiple cancer treatments as well as a number of “vaccines” (16 to be exact) for viruses. All Vaccines are adjuvants but not all adjuvants are vaccines. Which ever they are has no bearing on experience or outcomes.

I can wax for hours about the subject (though in my other life, I got paid for it) I was first in line for the vaccine when it became available I never considered J & J. In a nutshell unless discussion lends to experience and shared experience, its not helpful to Rare Disease Patients. I spent 20 years in the lab becoming expert in adjuvants as opposed to 20 hours combing the internet. I have found NOT 1 lay discussion “following the science” and not sharing personal experience to be either valid OR helpful.

So again @rebe , Thank you for your on point question as to what others have found for themselves.

TJ

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True, rebe. The vast vast vast majority have survived. Conversely, many who have chosen not to be vaccinated are no longer with us.

I’d also be confident that if there had been a pattern of people with AVMs having adverse effects from the vaccine, your doctors would have got a memo and you would have heard about it.

Does that make this conversation redundant? Not at all. There’s nothing like hearing about the experience first hand from someone who is in the same boat as you. And that’s the beauty of Ben’s Friends.

Seenie

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Ι had my AVM removed in 2018 with surgery. No history of seizures before or after the surgery.
Got Pfizer shots for Covid in May and June 2021. No problems whatsoever. Just a little bit tired after the first shot.
Regards
L

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I’ve had both shots of the AZ vaccine. After the first one I had flu-like symptoms for a day - but I’ve heard even non-AVMers get this sometimes. The second shot was a breeze. My AVM is untreated and unruptured and personally I’m glad I’ve had both vaccines. I think the risk from getting Covid.is far greater.

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I was diagnosed with Large Pelvic AVM and a 3 cm aneurism on Jan 10/2007
I declined surgery as in my mind, Risks where two high. That was 14 years ago and I’ve had my second shot of Moderna on August 11/2021 everything is fine with me so I wouldn’t hesitate to get the COVID-19 shot

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I’m glad this was posted and glad everyone stayed on topic and didn’t push the boundaries too far that it was stopped as I feel this is an important one

I’m all for vaccines in general but I am hesitant so this thread is helping me

I am currently having splitting headaches daily again so I’m not keen on getting it right now (sadly it’s only just become readily available here)… yes we are a little behind here

But I’ve also had an anaphylactic reaction before so it adds another layer to the decision of Pfizer or AZ. I’m supposed to take Pfizer at my age

In one mind I’m anxious about the vaccine but the other as was pointed out above was the covid anxiety would be gone once vaccinated lol

Anyway thanks for the post and hopefully others continue to share their experiences as it does help others

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This is what I’m looking worried about. I got Pfizer and on my second one had headaches everyday about the 4th week. I even told my sister and she was surprised as I never have headaches. Then all of a sudden one morning I woke up with a feeling of a knife going down from the top of my brain and I felt crosseyed. I had a brain bleed that caused a stroke. It’s been a 6 mths journey. Three embolizations and 2 wks ago a craineotomy. I could have died. I was dieing. It scares me now that I need the booster and I’m so afraid that what if the vaccines do this somehow. What if. I’m 66. I was pretty much past my AVM bleeding. I mean it usually happens earlier on in age I think.
Is there a way to find research? I can’t go thru this again. I mean I can. But I don’t want to. I’m still so weak. I think my PTSD is back from my childhood trauma. I’m scared of loved ones dieing and it so hard to stay calm. I’m sure trying. Things have changed so much.

Any ideas or any knowledge I would appreciate. Debbie

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I’m so worried the same way

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@Debbie

I’d discuss with your surgeon whether she or he thinks that your troubles are related to your surgery (embolisation) or to the vaccine. Insofar as your embolisation rerouted blood flows [about 3 weeks ago?] I would suspect that change rather than the vaccine.

We do know that some of the vaccines can lead on very rarely to blood clotting issues but what the probable underlying cause is for you sounds like it is worth discussing with your doc, especially if your doubt about the vaccine is hampering you significantly.

Best wishes,

Richard

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