Hi, I was diagnosed with a cerebral AVM in July, following a MRI and after a cerebral angiogram I was booked to have surgery within 3 months. It’s been a very bad time. The surgeon said that the surgery is high risk but less risky then not operating. I can’t exercise or do anything to raise my blood pressure but I have a stressful job and two kids. My AVM is on the surface of my brain so I’ve been told not to fall over or bang my head too hard. Last year I lost a lot of my hearing in both ears and i was trying to adjust to that when they found the AVM. I’ve now had two surgery dates moved in the last two weeks and I’m feeling pretty bad. My surgery date may get moved again.I’m finding it very hard to keep doing all the normal day to day things that need doing when in can’t see more then a week ahead and I have to be so careful and I can’t exercise. We don’t have any extended family to lean on. Has anyone had a similar experience? I’d appreciate any ideas on how to cope. Thanks.
I know exactly how you feel, as I expect a number of us do.
I had a dural arteriovenous fistula (“DAVF”) near my right transverse sinus, so on the surface of my brain, mid way up the back of my head, right of centre. I could hear the blood whooshing into my transverse sinuses and they then pass by your ears as the sigmoid sinuses. I first discovered it in about Sep 2015 as a quiet noise. By the following year it was getting louder. I finally discovered an article on the internet that indicated to me DAVF and went to see my doctor.
It took until Aug 2016 to see an ENT specialist who immediately realised it was not in his speciality and he referred me for an MRI and then to neurosurgery. Every step of the way took at least a month and I worried my way through every single one of those months, in exactly the same way as I expect you are. If you want to see me going through the same stuff, have a read here. The timestamp for each entry is shown to the right of each post.
By Jan 2017, I was starting to feel worse each week: I felt my DAVF was getting more extensive: and I had to try to keep myself sane until April 2017 when I eventually went for the operation. I had an embolisation.
So… how can we help you? I think the main thing is that this is probably more survivable, more gettable-throughable than you’re giving yourself credit for. It’s a challenge to us. It’s the first time you’ve probably ever worried about your health. So I think my advice is to learn a little bit about it, about the operation. Read stories of others here. I think you’ll find a bunch of stories that will encourage you and a bunch that frighten you to bits, so it’s a fine line!! Try to walk away with the ones that give you more positivity than you have today. There’s every reason to be positive. Honestly there is.
Meanwhile, I decided to try to keep my mind busy. An empty mind has too much time to think about negative things. So find something to do to keep you busy. Ideally, find something that challenges your mind, so you have to actually think about whatever project it is. But do something you fancy doing.
We’ve been through this stuff and got out the other side. So there’s everything to be positive about.
Tell us what you know about your AVM and ask anything you like. It’s what we’re here for.
Very best wishes,
Hi there. I’m a mom so have to share second-hand for my 15 year old son, but he had a large AVM removed from his left occipital lobe in June, following 4 embolizations to decrease blood volume in the nidus to make it safer to remove.
After reading all of the experiences from members here about post bleed treatments, your doctors words “more risky to not operate” resonate with me. We were extremely fortunate to have discovered the AVM prior to a bleed, and that it was operable. After his 3 month MRI confirmed 100% removal, I can’t describe the relief of allowing ourselves to stop worrying.
I’m sorry you don’t have family to lean on. I hope there are others in your community who will step in, if you ask. I also found another mom in this group going through surgery with her son almost the same time as me. So this group is an amazing resource.
I will share as much as I can about our process that can help. Let me know. In the meantime you and your family have my prayers through this tough time.
Welcome @Hotspot to the family… I’m from Sydney so rest assured there are many Australians on this site also that will help you feel at home… So sorry to hear about your AVM and I’ve been there before in 2010/2011 after having my AVM removed via surgery after it bled, with no previous history I may add… there is light at the end of the tunnel and you will get through this.
Technology has advanced so much since my surgery in 2011 as I had an angiogram check in early 2020 that was done through my right wrist, which was much easier than the groin one they do… Please keep positive and stay strong cause that is what will get you through this even more so.
There is a Australian Group on this site where you may find others here in your state that can provide recommendations etc or share thoughts on certain doctors etc or just shoot the breeze with you for support…
-Australian AVM Group - https://forum.avmsurvivors.org/t/australian-avm-groups/18787
If there is anything we can help with then please feel free to ask and again please know you are not alone on this journey as there are many of us that have gone through this or continue to go through this… the positive to your situation is that they can get to it and remove it, which there are many that just have to live with their AVM as removal is not possible… God bless!
I’ve decided it is high time I created a space for members in Aus and NZ in particular to be able to share information. While there are categories for sharing Doctor Recommendations etc, it is especially difficult to find information related to these places among the wealth of information about US institutes.
If you are a member of the Australians group, you’ll get a notification of any new posts in this category.
I hope it helps you guys to stand together even better.
Thank you for your thoughts and kind words. It’s been a rough year trying to adjust to being hard of hearing, then finding the AVM and needing surgery. My AVM is on the left side of my brain and is of medium size and there is a risk the surgery will mean I lose motor function in my right arm or leg, but hopefully not permanently. I can’t hear at all well without my hearing aids now, especially speech is hard to follow and it’s worrying me that I will be in hospital and might not be able to communicate because it’s such a big effort to understand people and I mostly get it wrong. It’s just an added layer of worry. It’s great to hear your stories. I don’t know anyone who has had an AVM so it’s really great to find this group.