I feel some of what we are doing will worry you more than you need. You’re asymptomatic, so there’s every chance that your AVM is doing nothing, going nowhere and not causing you any trouble. So, ideally, don’t worry about it. I know that’s practically impossible to do.
As Merl says, getting used to the idea there’s a thing in there takes time. It’s a big shock and you need to process the apparent change that has happened. That mostly takes a bit of understanding as to what it is about and a lot of time. You’ll get to see the surgeon soon, so then you’ll know a bunch more.
In the meanwhile, you’re worried about having a stroke. What can you do to reduce the impact of that? You can tell those around you that you’ve got an issue and I bought myself a medical wristband that I put information like my full name and “Richard has a dural AV fistula, right occiput. In case of stroke dial 999” and my hospital id and my wife’s phone number. Now, the “in case of stroke, dial 999” is potentially unnecessary but I was looking to get help from everyone, not just the well informed. And I found having the wristband a way of relaxing about it a bit more, not least while on the bus, among complete strangers. In the UK, ambulance staff will also look at the emergency information on your phone, so you can put similar information on your phone.
I also started a project to keep my mind busy: filling the void with all of the worries would be less if there was a bit less void to fill.
So, while you’re waiting, decide on the strategies you might use to help yourself. And just because you’ve just discovered it doesn’t mean it is going to do anything any time soon. Honest.
We’ve been there. We know what it is like. (And actually, I’m trying to save you from worrying about it to the extent I did!)
Thank you for your message. Yes, trying not to worry is hard, hope to get used to it. I greatly appreciate all of the comments here, and taking the time to comfort in many ways my worries. I will make sure to let you know as I progress.
Thank you my friend
Hi there. Just seen your post and this email train and wanted to say Hi. I’ll keep it brief cos I can see you’ve had many other replies. I too have a right cerebellar AVM that is unruptured (ie hasn’t bled). When I was 14 I got hydrocephalus and had a couple of operations to sort it although it is recurrent. Around 15 years later I found out the cause was an AVM blocking the ventricles and causing fluid to build up. Like you I have very few deficits to my everyday life and would probably still be unaware of my AVM if it hadn’t been for the hydro and resultant MRIs. As others have said we’re all different and this isn’t a ‘one size fits all’ condition at all. It took me a while to realise that before I discovered this site. My docs have always advised not to dwell on my condition and enjoy my life just the same as anyone. So that’s what I do. I’ve never been overly sporty but i do exercise (not weights) every day. I eat healthily but don’t stop myself having the odd treat. I’ve never smoked, watch my weight and have the odd drink (although I seem to have gone off it a bit lately). I have holidayed abroad and that has meant air travel I think if my AVM bleeds I’ll know although I’m hoping it’ll never happen. Here (UK) they’re not keen to treat me.but I’ve accepted that and am fine with it.
Thank you for your message. It came at a very good moment, thank you. I appreciate all of you who have taken their time and commented. As mentioned by many and my self, I am still assimilating the information, and hope to feel better about it soon.
You and I have many similarities. I had an AVM on my right side, by my cerebellum and pons. I am a older however (58) and not as handsome. My AVM was discovered prior to any bleed. I had two flow related aneurysms. I also had my gamma knife surgery in 2016 at Cleveland Clinic by Dr. Mark Bain, who was mentioned in another comment in this thread. My AVM is now gone. It took 3+ years to go away after my procedure. I know how worried you may be, as I have been in your shoes.
Regarding your questions (of course, this these are my opinions and what I did or would do):
Exercise, I wouldn’t lift heavy weights, but I continued to cycle, walk and jog. I take blood pressure medication and it’s important to manage the blood pressure. I’d avoid heavy weights.
Food - it sounds like you’re healthy, I don’t drink coffee but if that increases your heart rate or blood pressure, I’d take that into consideration in your decision.
Drinks/Concerts - I don’t have an opinion here.
Travel, I had my procedure December 15th 2016 and flew from Cleveland to Utah the very next day. What was bad luck was getting stuck in Denver sleeping on the floor that night due to snow storm flight cancellations. But, higher altitudes have less pressure, which is why airlines pressurize cabins. I was told by my doctor going up is no problem. Diving, however, increases pressure, so I wouldn’t test how deep your dive watch can go.
Bleeds - again, no experience, but I did have a card in my wallet that would explain to a passer-by that I may be suffering from a cranial bleed and I need their help to get to a trauma center. I lived in the Middle East and occasionally traveled from UAE to Qatar and Oman. I would become familiar with the hospitals in the area so I could ask to be taken to a particular one, not any hospital, so as not to waste time.
Given the location of your AVM, that is not a good place to be messing around, which is why I went with Gamma Knife. I was in Cleveland Clinic from 7am to 4pm. I had a cranial angiogram, MRI, and an CT Scan so they could use those images to model the treatment for the Gamma Knife. I was on the GK table for 1 hour 25 min. Afterwards, I went to dinner with my wife, but due to nausea, I had to throw up as we drove to our hotel. Annual MRI’s showed not much progress for anniversaries 1 and 2, but on year three, it was ~95% gone. As others have commented, this is probably congenital, you probably had this since birth. Your current knowledge of it does not increase your risk any more than a year ago when you didn’t know about it. Still, I know this is on your mind 24 hours a day. I’m happy to answer any other questions you may have.
Thank you for your detailed summary, very helpful. We are hoping to travel this coming Sunday to Cleveland Clinic, and are expected to meet with Dr Mark Baine the following week. I hope we have more information by then. All of your thoughts and comments have been of great help.
Francisco I am so glad you found our wonderful site and put your story out there for us to read. Everyone has a different story to tell here. I think your questions about your diet and exercise would be best answered by your doctors. I am 72 and have never had a bleed, but I have what my hubby and I call episodes. The left side of my face, left arm and sometimes my speech is affected which are small mini strokes. They only last about 20 to 30 minutes. Of course that is not time enough to get to a hospital, so we just take it as it is dealt to me. We are always scared of the unknown, but just remember we are all here for each other. Keep us posted.
The only symptoms I had of my bleed at 44 yo was numbness down the back of both legs. The next day walking became wobbly and my speech did start to slur a bit before I went to the ER. Take care…
Hi J,
I had 2 AVM craniotomies at 14 and I still have epilepsy. The probability of a seizure is heightened if I fly because it messes with my sleep patterns. I didn’t think about what you said about altitudes. Thanks.
It seems like you have a good lifestyle. Good job! Don’t take it for granted. Truly try to appreciate that and your family every day. You can lose that in a heartbeat.
As far as your fear, I can relate. I’m feeling that right now and I’m having trouble dealing with it.
I’m not going to go into my details because you reached out for help. Maybe sometime I’ll ask you for help.
It would be nuts for me to try to give you advice I’m not yet succeeding.
All that I’m going to do is hope you make it through this ordeal and give you whatever encouragement I can.
GAW
My AVM was discovered prior to any bleed. I had two flow related aneurysms. I also had my gamma knife surgery in 2016 at Cleveland Clinic by Dr. Mark Bain, who was mentioned in another comment in this thread. My AVM is now gone. It took 3+ years to go away after my procedure. I know how worried you may be, as I have been in your shoes.