I’m now 61. We have similar circumstances. It’s been two months since my craniotomy (10/28/21). Surgeon said my AVM was there for about 15-20 years; he could tell from the calcification of the vessels. When he got in my brain he found that I’d had two small spray bleeds (probably when I had my first bad headaches in June 2021) that did not show on scans.
Re booster: I am not giving medical advice, simply sharing my story. Surgeon asked me not to get it before surgery and to wait 1 month before getting it after surgery. So, I got my Pfizer booster on 12/18/21. Had one afternoon of achiness and general blah; no headaches or fever. Since then I’m fine. I do have the same concerns as you, and I asked my surgeon about vaccines multiple times and he said it was OK and he was an advocate of vaccines. I trusted him to open my brain and resect the AVM, so I am trusting him to tell me the right thing about the vaccine. And I’m a person who doesn’t trust easily. During the consult phase in late Sept 2021, another surgeon said it was OK to get the booster with my untreated AVM (I hadn’t yet decided on surgery at that point). In the end, everyone must decide for themselves.
I know, it’s a journey, and one that we shouldn’t have to take in our old age.No one should, ever. This board should not exist! But we’ve come this far. I’m still rehabbing bc I have some peripheral vision loss. But I’m grateful the AVM is gone and I’m still alive. I can do most things (not driving, though. Yet.).
Hang in there. Reach out to your surgeon about the booster. A book I’ve been recommending, even to my “normal” friends, is The Little Book of Inner Peace by Ashley Davis Bush (who I am not affiliated with in any way). Who doesn’t need some inner peace? I took this book to the hospital with me and found it calming. Focus on healing and positivity, be in the “now.” All the best to you! To all of us!!
My daughter, 12, has an untreated AVM and she received both Pfizer vaccine doses. She was a little tired after the second dose, but she milked that for a day off from school, so she got a pretty good deal.
This is exactly my concern. I had two Pfizer shot. On the second about 2 weeks out I started having headaches in the back of my head, actually around the vermis where my AVM was. I told my sister I keep getting these headaches. Not bad just regular. Then one morning I had a brain bleed and then a stroke. After 6 mths it’s time for my booster and I’m scared to get it. I wasn’t it. But I feel there may be a problem. I hope I can read what u left to see what it says. I asked my neurologist about it as it’s time for my angiogram. He told me to wait and see if it’s gone and to see if I have anymore, in so many words. I don’t want to go thru another stroke. I hope they will find out if it’s caused by the shots or not…thank u for your post
In summary, the overall recommendation is to get vaccinated and there is still a general lack of evidence about the rare (and/or longer term) complications of neurologic conditions with the vaccines. As @ILJilly said “it is still too early”.
There are general risks associated with the vaccines that don’t depend on you or me having a neurological condition – such as the risk of CVST stroke – but these are things your doctor or vaccinator should take into consideration when deciding which vaccine to use. There appears to be a higher incidence of CVST clots in women of childbearing age who are using an oral contraceptive from one or two of the vaccines, for example, so selecting a different vaccine makes sense in that case.
The report makes it very clear that the technology used in these vaccines is not going to give you coronavirus. They are quite different from the ways in which vaccines were developed in the past.
My reading of the whole article is that it is still recommended to pursue vaccination but if you are concerned, I would discuss the article with your neuro before taking the plunge.
Beautiful reply, @DickD! I took a look at this report again and the link Dick gave was to the update of the report published on 12 October 2021. (Original report was released 29 July 2021.) So they looked at it again! Same conclusion; I couldn’t really find what they updated. At the end, many doctors from many institutions I recognize as having expertise with AVMs have approved the report.
Anecdotally, I’m now at 13 weeks after crani and 5 weeks after booster and feeling well. No headaches since booster. Peripheral vision is improving slowly thanks to some vision exercises and work I do on a balance pad. Recovery is not a straight line, as my surgeon advised. All the best, @Debbie and everyone!
Thanku Richard. I did and he told me to wait to see if he got it all of the AVM and to see if I have anymore AVMs. I guess my concern was that after the second one, two wks later I had a brain bleed and a stroke. If u have family or friends that are totally against vaccines they will tell u the shots cause them. So of course my guard comes up from the nightmare I’ve been in. The Dr saying wait, makes me wonder too. But all I can do is wait and see what happens. I’m ready for the booster. I sure don’t want covid either! Thanku for the nice response!