Covid 19 & vaccine

Hello all, just looking for your input, and to start a thread with hopes of substantive, non-political discussions, in the spirit of learning from and supporting each other, as we always do.

Are there any here (pre/post AVM) waiting to get vaccinated? I ask because there is still so much not known about why the virus, in addition to being often fatal, also has terrible side effects on the heart, lungs, and brain. The latter is my specific concern. And there is zero information on the long term side effects of the virus and vaccines. I asked my doctors if I and my AVM brethren are at higher risk. “Not likely” and “time will tell”…not encouraging responses.

Your thoughts?

Thanks very much!

Another reason for my reluctance to be vaccinated: in Missouri, a state in the midwestern United States, a 3 year old contracted covid and had a massive stroke. What’s equally frightening is that the doctors don’t know why. Again, my point being there’s just so much unknown about this virus and vaccines.

1 Like

I am waiting to get vaccinated. I appreciate your statement of it not being political. For me, that’s the farthest thing from it! I want to be vaccinated and my family to be as well. Just like chicken pox, measles and all the rest! Now as far as the vaccine itself, both Moderna and Pfizer have side effects but none that I’ve read that are fatal. Check with your doctors of course but seriously, get the shot(s)! Thanks for posting! -from a middle-aged multiple ruptured anyerysm curmudgeon.:sunglasses:

Thanks for your input. I haven’t read about any fatalities either. But CDC data indicates ~70m vaccinations have been administered. That’s not even 1/3 of the population in only a few months. So, I too wait.

FYI: I’ve succumbed to pressure three times in my 60 years and got flu vaccinations. Coincidentally, those were the only three times I got the flu.

1 Like

Hi, I live in the UK and have also tried to find out whether having a cerebral AVM puts me at any higher risk if I was to catch Covid, and also therefore whether I’m eligible for a vaccine with all those at moderate risk (this cohort is currently being vaccinated), but so far haven’t had any answers. My GP surgery has said they’ll ‘look into it’ so I’ll let you know if I hear anything…

Hi Sophie,

Thanks for your email. A few months ago a 3 year old baby contracted covid in Missouri, USA, and had a massive stroke. Hopefully you can open the link. If not it should be easy to find online.

There’s just so little known about the virus and vaccines. So I’m being extra cautious until the researchers know more.

Stay safe and healthy across the pond.

Bill

p.s. I’ve been to the UK twice. Lovely country. Lovely people.

1 Like

Bill, Hi!

Like you, I’m waiting for the vaccine. I’m over 50 and in the UK, so should be offered the vaccine before the end of April, I think. I’ll be taking it. Again like you, I was encouraged to have the winter flu jab in January, so I had that and felt noticeably rough for a day or two. I expect the coronavirus jab to be similar.

My mum has had the jab and had zero side effects. My wife has had the jab and was as rough as anything for a week. Her mum has had the jab and was fine, I think.

When my wife (who works in the health service) had the jab, everyone in her office was offered the Astra Zeneca jab and several of them had some temporary side effects, like my wife, but few of them for as long as her.

In terms of risk of the virus to those of us with strange stuff going on in the brain, I found this document on the Association of British Neurologists web site last March. It does talk about risks of the virus re some neurological conditions but doesn’t seem to have been modernised since last March. It might be useful for you.

Hope this helps,

Richard

I got vaccinated last Friday. Actually my 2nd shot. The reason I sort of luckily got my shot earlier is because I work at the local school. The side effects from the shot are say about the same as your standard flu shot. I just felt tired for a day and my shoulder was sore.

2 Likes

Hi Bill,

I am 56 years old, an AVM survivor from the UK and had the Pfizer vaccine last Wednesday. I had no side effects other a slightly sore arm for less than 24 hours afterwards. My partner had the Oxford vaccine a few weeks ago and was a bit tired the following day, but nothing else. As regards the risk from the virus, I can only talk from my AVM experience - (we all know every AVM is different) - and that is that an increase in body temperature (whether internal or external), stress or extra activity put pressure on the AVM which in turn put pressure on my brain and caused seizures and an extra risk of a bleed/stroke, so for me, being offered the vaccine was wonderful and one which I gladly accepted.

Hi Sophie,

I live in the UK and had the jab last week. I was surprised to be invited in because by age alone I should have been in group 8 out of the nine, but I think I was invited under the ‘underlying health conditions’ criteria as it states ‘chronic neurological conditions including epilepsy’. I am on anti-convulsant drugs for historic seizures caused by my AVM, so even if you are not, the argument for your vulnerability is worth a shot - no pun intended (well maybe a little)!!

2 Likes

How are you feeling after shot ? Any side effects ? Thank you

No problems at all - a slight discomfort at the injection site which lasted less than 24 - but this you would expect with any vaccine. I was advised that I may experience flu like symptoms following the jab, but I did not. Looking forward to the second jab now.

Hi Bill4,
I have the same question, is it safe for me. I am 47 year old and have both an AVF & AVM in my brain. AVM was treated with gamma knife in August waiting to see if gamma was effective.

I am also wondering if the covid vaccine is safe for me to get and honestly don’t know that anyone really knows the answer. I should be meeting with my neurosurgeon soon (dr Solomon in NYC) as I just had my first post gamma MRI done and I’m waiting on the results. I plan to ask my DR this question and can relay what I learn.

Amy

1 Like

Hi,
Anyone of you guys took covid vaccination? Not sure if any side effects for AVM survivors ? :sweat_smile:
For me, Malaysian likely to be vaccinated in 3rd quarter this year…

Staysafe!

I’m up for it. I should get done by the end of April, I believe. From other conversations I’ve read, the only thing to validate is that you’re not allergic to any of the ingredients of whichever vaccine you receive.

Some neurological conditions (e.g. people with cerebral palsy, possibly those with Downs syndrome) bring an increased risk, increased complexity from Covid19 so I would think that advice would be a higher need for vaccination.

When you get to have your jab, the nurse should ask if you have any allergies. Just make sure you state anything you have.

Hi, Jia,

AVM survivor here and had my first jab last Wednesday. I had the Pfizer jab and apart from the usual sore arm at the injection site that you get from any vaccine I have not had any side effects. As someone previously said, the important thing is to tell the person giving the vaccine whether you have ever had an adverse reaction previously to vaccines or medications.

Hi,

Hope all is well. I’m scheduled to get a covid vaccine this week. I called my neurologist to get the clear to get the vaccine because I have a venous malformation and a DVA. Unfortunately when I spoke to the doctors team I didn’t get the answers I wanted. They told me they cannot inform me about anything and have no clue whether or not this vaccine will have a negative effect on me in the short term/long term with my cerebrovascular condition. Can this vaccine harm me because I have a venous malformation/DVA? Please help.

1 Like

Hey Sal,

Let’s face it, this Covid 19 virus is still relatively new to the world. Under normal circumstances vaccines can take many years to develop, test and authorise and yet here we are, a year after the genome of the virus was mapped, with a vaccine. Medically speaking this is unprecedented. Because the process has been so rapid all of those finer interactions with individual conditions have not been established. So for any Dr to be giving you a Yes/No answer to your question is near on impossible.

There is also the question about individual vaccines. Pfizer uses one technology, AstraZeneca uses another and then Sputnik uses yet another again. Then we have the varying strains of the virus and how they interact with individual vaccines and the answer is… …Nobody knows for sure.

For any Dr to be giving you an assurance that ANY vaccine would be safe for you, just is not possible, the science to prove it simply isn’t there yet. They talk of an 80% efficacy rate, but that’s for a ‘normal’ healthy individual. For people with underlaying conditions that rate would drop. But for you as an individual, with an individual condition it just is not possible to say how effective/ineffective any vaccine is going to be.

If a Dr gave you an assurance that for you it’s safe and then you had a reaction, a life threatening reaction, they could find themselves professionally liable and I doubt you will ever find a medico willing to take such a risk.

Now, I’m no Dr, but there’s no way I’d be saying it’s 100% safe, the dr’s, the scientists they simply do not know. The science, the proof simply is not there to be able to give any such guarantee. I’m sorry, this probably isn’t the answer you wanted to hear, but, in my opinion it would take many years before they can give any such assurances.

Merl from the Modsupport Team

I had 2 Moderna vaccines. I feel fine. I had my AVM removed in 1973. I just feel that a vaccine will keep me out of the hospital in the event I do contract Covid. Home treatment is far better than being so sick you have to be hospitalized. Good luck and God bless.

1 Like

Sal, Merl hit the nail on the head though at a bit of an angle. There are NO guarantees in medicine with the possible exception of organ removal and amputation and then only to the extent you guarantee its gone… Science is mis characterized as providing answers. What science really does is provide a platform to ask more questions. There simply exists no data to specifically answer your question with certainty. So you need to go to my get an answer ploy “Dr. XYZ, IF I were your mother would you give me the vaccine?” Same with any procedure/treatment. That will get you the answer you really want. Isn’t what you really want to know is should you take the vaccine?

TJ, Mod Suppport

Hi TJ,

You’re partially correct. Because there are so many elements we don’t know about side effects, long term in particular, my question is: should anyone pre/post AVM get the vaccine this early in what is essentially an extension of the testing phase. I plan on getting vaccinated. Just later rather than sooner.

Thanks for your input!

1 Like