COVID 19 Vaccine and Grade 5 AVM

Hey all,

I’m 19 with a grade 5 untreated AVM. I am taking Keppra and other medications like verapamil. Anyways, I want the vaccine and both my neurologist and neurosurgeon said I was fine to receive Pfizer. Even though I can make my own decisions, my Mum is freaking out about the vaccine and is against me having it because in her words ‘there isn’t enough research’ and ‘we don’t know the long-term effects’. Please let me know why you agree or disagree with me taking the vaccine. I really want it mainly so I can leave the house autonomously once these restrictions in NSW begin to ease and so I don’t transmit the disease to others if i catch it. Let me know. Thanks in advance.

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Hi Dani. I understand your wish to be vaccinated and equally, your Mum’s concerns. Everyone’s situation is different so I can only pass on our experience. My 25yr son has a large >6cm, left hemispheric Grade 5 untreatable AVM and is on a number of medications including Keppra. He suffered a intraventricular haemorrhage at the end of February this year and was in St George Public hospital for 6.5weeks but has thankfully recovered with some short term memory loss and further loss of his field vision. We also had questions regarding the vaccination, particularly after his recent medical event, but both his neurologist and neurosurgeon said he was fine to receive Pfizer. He had his first jab on Jul 13 and his 2nd on Aug 3. The only side affect was a slightly sore arm for a couple of days. He is glad that he is fully vaccinated especially with the Delta strain of Covid circulating and affecting younger people. We felt that the risk of complications from catching Delta with an underlying AVM outweighed the possibility of serious side effects from having Pfizer. I truly understand how difficult this is for both you and your Mum so I hope that sharing my son’s experience may be of help. Wishing you all the best.

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Hi there. I’m afraid that noone can really tell you what to do. The decision has to be yours. Some people are really against this vaccination - maybe for the reasons your mother cites. But for others the risk posed by getting/passing Covid is far greater. It sounds like you are very sensible and positive which is wonderful. But try not to be swayed by others too much. Stick to your guns and trust yourself. Good luck.

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Hi @dani.has.an.avm , TJ here I’m one of the Executive Directors and Chief Science Officer at Ben’s Friends. I had a career in medicine and medical research before my own disease put an end to that. One of the projects lead to the open science patent for mRNA that has lead to not only these vaccines but numerous cancer treatments and biologic medications for Autoimmune disease, and now a new field called Precision medicine… It never ceases to amaze me where all this has gone. BTW that work was 30 years ago, so I am on the outside looking in. There is nothing new about mRNA binding. Mucinex uses it. In fact responding to a Pandemic with mRNA vaccine isn’t new. Do you remember Ebola? Prolly not, the DOD biowarfare department responded with an mRNA vaccine in 2 weeks. No Pandemic. Now I’m not going to debate the vaccine with anyone because it goes nowhere. I’ll leave it that I got it as soon as it was available and I got my third dose last week. The first two sticks were nothing events. I got sick with the third. We celebrated. Believe it or not you should get a reaction because you are simulating the disease so your body produces anti bodies

What I will talk about is mother and how fortunate you are to have her and have her in your corner. I’m old in case you haven’t gathered it. Over a lot of years, my wife and I have fostered many children often most with special/health needs. We have buried 3 have 1 in hospice (he’s 50) and adopted 14. By the way you may have seen our son who had the AVM on TV. He was on Deadliest Catch, gave up fishing much to his mother’s relief and took up trucking. Ice Road truckers…

Your mother is scared chitless. That comes from love. To her right now everything that comes along is a direct challenge to her baby. Worse objectivity often goes out the window. It’s going to be hard especially with all the noise about the vaccine much coming from pseudo scientists and keyboard warriors. I guess what I’m saying is as others, is it is up to you. Love your mother, she is your advocate, but realize her love and fear makes her scared if not cynical. She will be relieved with resolution of the vaccine.

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@dani.has.an.avm I might as well add my opinion.

When it comes to science/medicine opinions are like a butt cheeks: everyone has two but that doesn’t mean they should show them! From what I have read, your Doc is a keeper. While the final decision on vaccination is up to you and only you, it is clear your doc is well versed and has given more than a little thought to this matter and I would trust him. I believe he is correct in his choice of vaccine for AVM patients.

Pfizer has by far the greatest body of knowledge and best application. and probably is why they have full FDA approval (which is not recommended by bureaucrats or industry folk.) J&J is doing something traditional and old (if not almost obsolete) and with the limited numbers we have, the highest risk vaccine, though the risk is similar to the odds of winning the Powr-Ball (the risk of serious complications/death from contracting Covid is one in 10 as is the risk of contracting it). Astra Zeneca has gone to a new place, I suspect they will have the best just not right now. Moderna is fine but I’d listen to your doc he is making a well informed recommendation should you choose to get vaccinated.

A disclaimer however on my part… Pfizer started producing their vaccine 30 miles south from here at a company formally called Ribi-immunochem whose lab I once worked for and is literally across the street form the NIH Rocky Mountain Labs whom I also worked for. So while I my be biased, both are associated with the University of Montana where I taught. That being said I got the Moderna vaccine as it was the first available to me.

TJ

Hey Greg thanks for sharing. :slight_smile:

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Thank you for your message Jaynoe, it’s really helpful to hear about other grade 5 experiences with the vaccine, and I’m sorry to hear about your son’s episode in Feb. I hope everything goes well for you and your family. <3

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Thanks you Lulu, yep I agree with you. The main thing for me is respecting my Mum because I love her and don’t want to upset her. I guess these are just very uncertain times, and I can understand her concern, but at the same time I really want to leave my house lol. Anyways, wishing you all the best, stay safe :slight_smile:

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Hi Dani,
I’m a mom of a 15-year old who had a very large AVM removed in June, following 4 embolizations. I will share only facts, in case it helps you make your decision. My son asked us to schedule his vaccine for the very day after he got his 6-week all-clear from his neurosurgeon. He had his second shot of Pfizer last Saturday. He is also taking Keppra. He had no reaction to the first shot. On the day of his second, a sore arm but nothing further. Sunday he felt a little under the weather, like mild flu. He took a nap and by the following day he was back to feeling great. No perceivable interaction with the Keppra. He goes back to (in-person) high school on Tuesday and he feels relief at being as protected as he can be at this time after spending more time in the ICU over the past 8 months then he’d like to repeat. For him the risks were acceptable.

My thoughts are with both you and your amazingly brave mom.

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Hey TJ, thank you for all that info. That’s super helpful. Yes, I believe Pfizer will be the most appropriate for me especially based on my doctor’s advice. I had no idea that a vaccine was developed within 2 weeks for ebola. I know that there will be a reaction from the vaccine - that’s how vaccines work of course but I guess my mum is just worried about its impact on my avm - fair enough. However, after coming on here and reading about other avm experiences with the vaccine, I feel reassured that I will be fine. Good on you and your wife for adopting. That’s amazing, and I’m sorry to hear about the passing of 3. Also, amazing that your son is so accomplished while having an avm. Best wishes to you and your family. :slight_smile:

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Hey Heather, thank you so much for your message.
So great to hear about your son and his experience with the vaccine considering that he is also taking keppra. I hope everything continues going well for you and your family. Best wishes <3

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Hi @dani.has.an.avm its great to see a fellow Sydney sider on here and hope lockdown hasnt got you going too crazy… look as far as the jab the government here have not made things easy on us in NSW with lockdown etc but at your age you have Pfizer availability being between the 16-39 age group… I am located in a LGA hotspot and cant get in earlier anywhere for Pfizer at the age of 41… I booked my Pfizer jab back in June and still waiting until mid September for my first shot… My neurosurgeon, neurologist & GP’s have all agreed Pfizer was the best option for me and the fear of what could occur vs if I picked up Delta outweighed all risks.

I had my AVM removed via surgery in 2011 and if I said I wasnt worried about the shot I would be lying, however have you seen anyone out here not worried about the jab… most normal ppl with no previous health issues are scared so its normal we are all anxious about it… I trust my medical experts and think the severe and rare risks of taking the jab would be no different or possibly much less if i contract the virus, which at this stage you can see they want to open back us up ASAP… you are doing the right thing if you want to keep others safe and healthy around you and again it is your choice and your medical experts advice… God bless!

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Hi @Jaynoe I hope you are doing well considering the current state of NSW… Like your son I had a bleed and was treated and had my AVM removed at St George Hospital in 2011 at the age of 31… It’s good to see others here who have had the Pfizer jab with no major issues, which my doctors all agreed I should have… God bless!

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Hi Adrian1. We are coping well thanks. I’m very glad that you got through your bleed and were able to have surgery to remove your AVM. Unfortunately my son’s AVM is not treatable by surgery or any other medical intervention at this time as it’s too risky due to it’s size and complexity so his risk of another bleed remains. He is fortunate that he made it through his first rupture but it’s the uncertainty of another bleed that makes his condition difficult to live with. Stay safe!

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Hey Adrian, thanks for your message, and likewise haha. I am also in a hotspot, just super bored atm.
Pfizer seems to be the best option for me considering my age and situation and yes… the risk of catching the delta strain or even worse spreading it to other people in the community outweighs the risk of vaccine complications.
It’s great for me to listen to others and their experiences with the vaccine before I book it.
Anyways, stay safe and God bless :wink:

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I’m sorry to hear that & wouldn’t rule out getting a second opinion on his AVM with some trusted neuros out there… from what I’ve been told most of the best ones in Sydney are located in Prince of Wales Randwick… God bless!

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If you’re doctors say it’s clear for you to get the shot I would get it. I’ve had both the shots. It’s really the same as getting the flu shot. Your shoulder may be sore and have a bruise for a day but it’s not bad. There starting to have it required where I’m at. People are just trying to make everyone panic about being forced to get it now but I joke about it and tell them think how many shots we were forced to get as kids. For instance tetanus, hepatitis, Polio, Measles and mumps shot, and now they have one for chickenpox. There all required at schools now and no one complains about those shots. In simple words don’t worry about getting the shot you will be fine.

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And this is how we’ve been advising our members from the start. Your doctors have the best and the latest information, and they know you and your medical situation. (And we pay them big bucks to give us advice!) Thanks for reminding us of this basic mantra, JohnO. Glad you’re well.

I’m old enough to remember polio. And the reason young people today don’t can be explained in one word: vaccination. Thanks for that reminder too.

Seenie from ModSupport

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@dani.has.an.avm I do understand your mum’s worry about what the long term effects of the vaccine might be (because we haven’t had these things long term yet, though some of the vaccines may be variations on something already in use, I’m not sure).

I love your respect for your mum and I hope you can make a decision that is right for you (and bring your mum along with that decision if necessary).

I’m very keen in this forum that we should be able to talk about our worries about our AVMs, and in this case about treatments for an unrelated thing but which you or your mum are unsure of because of your AVM. Nobody should push you into this decision, nobody should push you away from it. In my mind, it is very much the same trouble as that which we face when we are told we should have surgery on an AVM: you feel caught between one set of risks and a different set of risks and yet, as patients rather than doctors, we have to make that last decision: do it or not do it. It’s very personal.

I hope by chatting about this that you’re getting to your own position.

Very best wishes,

Richard

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Hi Dani
Just to let you know I have an untreated AVM, mature age, on Keppra, and have had both shots of Pfizer in Oz back in June. Side effects nothing out of the ordinary, sore arm, bit under the weather. Also my 30 year old daughter has had it as well. I am just posting this as info for you. It is a personal decision for you to make.

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