hi there hope you’re doing well 
My name is Tony 53 years old. On 29 of January felt down on the floor with long sizure and end up with emergency in neurological London hospital the best one for this cases. I wake up few hours later and my wife told that the ct scan shows Avm malformation and they believe that I did born with this or happened later on. However the doctors discharged me 2 days later with pills 
1000 twice a day. On 12 of February I had meeting with the specialists and they showed me the images from ct scan and IMR the problem on the left back side and informed me for the danger of rupture in the future. I got on 19 of March the angiography that will shows the specialist which treatment the will choose for this case . They are 3 . Im not scared but shocked because I cancelled all my daily activities. Work driving gym ectr. Till now Im positive and hope to continue like that. Let you know that after the out of hospital I don’t feel any pain or something else on my head or body all the blood test blood pressure or bloods level are fine. The worst on my thinking is the surgery. However I wish you all the best on your health. Im happy for sharing my story with you. Any advice will be welcome.
Thank you all.
Hi Tony, and welcome! I was 48 when my AVM showed itself, I had no idea what one was or that I had one prior to it deciding to bleed. I was in the hospital for 5 days and discharged with a lot of follow up. I had an angio while I was in the hospital and then a second one prior to selecting Gamma Knife. The angio is key to figuring out what next for sure. My neuro initially told me only walking but after follow up he allowed biking, light weights for the next month and then basically free reign to do as I had done my entire life in respect to exercise. The caveat was to stop immediately if any pain. I was advised to not scuba dive or sky dive. That was easy, I don’t scuba dive and if I don’t jump out of perfectly good airplanes! Take Care, John
Hi John I’m happy that you are doing well. Thank you so much for contacting me. I will let you know what the neurological team going to decide after the angiography. The strange is that I haven’t any symptoms except the sizure on 29 of January. Im under pills levetiracetam amox 1000 twice a day.
Thank you John
All the best for you 
Hi @Tony! Welcome to AVM survivors!
Having a discovery like this is very worrying: life feels like it has suddenly gone in a direction we were not expecting and don’t really fancy! Feel free to ask any questions you like!
When you’re worrying about surgery, you’re probably thinking about open surgery – something called a “craniotomy” but this is only one of the three main ways in which the team might approach your AVM (and there’s also a possibility that leaving it alone is the best thing to do). The other ways in which it might be treated are through radiotherapy (which obviously feels much less invasive than a craniotomy) or a catheter embolization procedure. My AVM was resolved by embolization and basically, the consultant threaded a very fine tube from a small cut at the top of my thigh, all the way up to the back of my head and injected glue into the AVM to close it off that way.
The approach that the neurosurgery team propose for you will take into account the effectiveness of each approach for your specific AVM and the risks in each method. They will probably offer you one or two methods that they might follow and talk you through the benefits and risks.
Having an angiogram is the usual first step after an MRI or CT scan, so we have pretty much all had an angiogram. It is very much like I’ve described the embolization but a contrast material is injected via the catheter so as to illuminate the AVM and capture images on x-ray.
Like I say, we all worry about this. Just feel free to ask anything you need. We’ve been exactly there!
Very best wishes,
Richard
Hi Richard thank you for your reply. Because except the sizure on 29 January this year till now I don’t have or feel any pain or side effects I’m absolutely normal and the only worries I hold on my mind is that nothing is going to be same after whichever intervention it will be I mean same life like before. For me I happy to live without any intervention. But I have obligations towards my family. But let’s say could have been worse. So I will keep positive. Thank so much for your reply
All the best 
Tony
Well, if it helps, I have similar obligations. I had an embolization very nearly 8 years ago and have been safer since.
I can also say that fear of the unknown is a big factor and my experience of the angiogram and embolization operations is such that if I needed to go through it all again, I’d be a lot more comfortable about it than I was first time.
Sometimes the recommendation from the doctors is to leave it alone and just keep an eye on it. In that case, operating on it probably comes with some near-guaranteed side effects that you’d not want but if the recommendation is to operate, they’ll talk to you about the risks during the operations and the apparent risk of leaving it be. It’s a hard choice to make but you’re the only one who can decide which way to go.
As you go through these things, feel free to share how you’re getting on because we may be able to help a little and by sharing your story you may well help others.
Very best wishes,
Richard
thank you
When I was told I was going to need a crainiotomy to remove my AVM, I was overwhelmed. The doctor explained the probability of me living 5 more years was about 20%. My wife helped me go through with this surgery. I had the crainiotomy to remove 80% of the AVM followed by Gamma Knife to remove the last 20%. It was very difficult. However, that happened in 1989. I worked as a chemist for 34 years after those surgeries and with my wife we had three children. I’ve been retired for 6 years. It’s been hard, but I’m still alive.
thank you for your reply Armand. all the best for your Family and your lives🙂 Thank you