Hi All! I’m 42 year old female and I was diagnozed with left-sided DAFV in April 2022. I never had any head injury nor infection, but dehydration could also be the reason, I don’t drink much water. My DAVF is type 3 and at a high risk of bleeding. Just had my embolization procedure done on July 7, which unfortuntaley didn’t work as my DAFV is continued to be supplied by blood. And now my neurosergeon proposes to go with craniotomy. I am so scared of the post surgery risks and that I will not be able to go back to my normal life. I am scared that I won’t be able to work as an accountant after surgery as my memory and mathematics skills will be lost permanently. If it wasn’t for my double vision I would never know about this thing in my head. When I first developed double vision I was sure it would be fixed by ophtalmologist, but I couldn’t imagine then that I will end up with OR for embolization! It was such a great thing to find this forum where people share their experience. I look forward to find some support here too as I don’t know what to do at the moment. I’m just lost
Welcome Jenny, and has you likely saw the theme is that its great you found us, but too bad you had a reason to look! My AVM was found due to a bleed, and I ultimately had gamma knife. So quite different options than you. My other option was craniotomy but they felt gamma presented the least risk of side effects. Mine was located on the inside if the left temporal.
Decisions are hard, and this is one of those cases where we don’t know if we made the right one until after the fact. The key is to be at peace with your decision. For me was weighing the risk of another bleed during the two years or so for gamma to work, vs the immediacy of craniotomy with elevated effects. Ultimately I did not have a re-bleed during the “lag” time. It ended up being a good decision.
I guess kind of a long way to say, weigh your options, pros and cons and be at peace with the decision. Mt neuro was good in explaining the risks, that made it easy. Particularly when the Dr. who would have done the surgery said if it was him, he would go with gamma knife. I didn’t ask him what I should do, but he did answer what he would do if it was him.
Scared and confused are fairly common among us, who most have never heard of an AVM until finding out we have one. It got better for me in coming to terms with it as I gained more knowledge and determined which path I was going to take. That took some time for sure. Take Care, John
Hi Jenny, You got a superb response from John, one I can’t add to. Probably there’s no right vs. wrong decision. It’s a huge gray area because there’s a near-infinite amount of factors, and they change daily. My advice is to gather all the facts, weigh the risks, then follow your gut. Best wishes, Greg
Thank you John for the great advice and for your support! I really needed it. I talked to my neuro today and we agreed on craniotomy. Radiosurgery unfortunately can’t be done in my case since it’s a matter of time and mine needs to be removed as soon as possible due to high risk of bleeding.
Thanks Greg! I followed your advice and I was in agreement with my gut today when talking to my doc )) I’m still scared and will be approaching the day of surgery but at least I’m ready for it.
I’m sorry to hear about your recent experience… it’s perfectly normal to be scared about having a craniotomy & as someone who has experienced this first hand I do understand your concerns.
All I can say is that technology has advanced so much since my surgery in 2011 & it was a slow process but I finally recovered & adjusted as needed.
As hard as it sounds, please try to remain positive & stress free as much as possible… I believe that definitely helped me a lot during that time… God bless!
I think we all understand how you feel. It’s a scary time and craniotomy is the most scary of the ways to deal with this stuff.
Is this something they’ve said outright to you? Or just you worrying that it could be the case?
I ask because you’ve described your AVM as a DAVF (mine was a DAVF, too) and my understanding of DAVFs is that they involve the blood vessels of the Dura Mater – one of the meningeal layers – the covering of the brain. As such, I’d have thought that dealing with a DAVF, even via craniotomy, would be less invasive, less liable to do you damage than any other AVM not in the Dura Mater but deeper into the brain itself.
So I’m hoping you’re being a bit pessimistic.
I have no doubt that a craniotomy scares us all but we have lots of people here who’ve gone through it and done very well.
Happy to hear about your recovery and thanks for support Adrian!
I was worrying that it could happen but after talking to my surgeon I got better idea of what are the risks. Yes you are right and she told me the same, also she told me that the area of my DAFV location is responsible for hearing and face.
Do you know which areas?
My DAVF was busy pumping blood into my transverse sinuses and then flowing past my ears, so the reason I went to the doctor was because I could hear the noise of the disruptive blood flow. So involvement of hearing isn’t a surprise to me, though how yours will affect your hearing could be quite different.
The other thing I can tell you by anecdote is that a lot of DAVF patients (on here) seem to have a bit of tinnitus post op. I had tinnitus pre op for decades but I do think I have more post op. If I listen to it it gets louder, so the best thing is to ignore it to the extent you can.
Mine is left Borden fistula supplied by left middle meningeal artery and left occipital artery with deep and superficial venous drainage. I also have pulsatile tinnitus in my left ear as if my heart beats there. But for me the major issue was double vision.
So it’s fair to say you’re very different from me (though I expect mine involved the occipital artery, I never asked and I guess type III indicates the deep venous drainage. I never asked about my classification but I guessed at [Cognard] type IIa / IIb because my doctor talked about reflux.
I did have the pulsatile tinnitus – which was what propelled me to see a doctor – and that did go post op. I found myself listening to the residual aircraft-noise regular tinnitus post op and I could hear a loud normal pulse post op but I think that’s just the normal pressures of blood in my arteries going up to where they were supposed to be (and me being very conscious of all the noises by that stage!)
Are you comfortable that you need the craniotomy? Because for me, that’s the big thing. I was absolutely certain that I needed it dealing with. I think if I couldn’t hear it and it wasn’t making me dizzy and I wasn’t getting worse over time, then it would have been a much more difficult decision to make.
Very best wishes,
You know I want this to be removed from my head otherwise I will spend the rest of my life keeping an eye on it. Mine is currently unruptured but if it does it will devastate my life and the life of my family. I am very emotional person and at work I used to be a perfectionist which is my great weakness, because when something fails it gives me so much stress. This is the way I am. I do understand that I need to change my attitude but I simply can’t. There are 3 weeks ahead of my surgery, today I feel I need to do crani but I’m scared what my feelings will be when there is 1 day left. Oh my God!
I’m very much the same.
I think the key thing is that the people who are going to look after you do this every day and are professionals at it. It is unusual to have no control over a part of your life like this, so it is always more difficult but my experience (I only needed the one embolisation) is that I was very nicely looked after by the consultant and by his nurses and by the people on the ward. You need to let go a little control for the day but they know what they’re doing and they know nobody is the slightest bit comfortable with the idea of a craniotomy.
Keep talking to us. We can talk you through as much of this as you fancy. The idea, as far as I’m concerned, is to help you worry a bit less than I did when I was going through the embo. Likewise, there are plenty of people here who have gone through the craniotomy and come out nicely the other side.
Anything we can do to talk you through your worries, just say.
Very best wishes,
Thank you Richard! Having discovered this forum is already a great relief for me. Thank you and the team for uniting AVMers around the globe!
I recall the night I got home from the hospital post embo I told my husband that I don’t hear PT anymore. For a second I thought since my neuro embolized it partially it could’ve managed to obliterate it completely. I wished it could’ve been true, some sort of magic that we all beleive in sometimes
Well they tried but please stick with treatment because I had nearly 1 year in hospital after an unknown bleed. I don’t recommend it at any age and feel surgery risks are much lower than deficits from a bleed.
Imagine having a bleed but taking 4 hours to get treatment at a neuro centre. I was fortunate to be near a hospital otherwise I milk ight not be writing this.
That said ive lived over 30 years post surgery so it can be done but I’ll be honest you’re likely to have a very tough and rocky journey.
Hi my “AVM family”! This is to update you on my status. I am now in the 2nd week post craniotomy to resect my AVF. It was clipped. I have terrible headaches, numbness of the half of my head, can’t sleep at night and trying to go back to normal life although it’s very very hard. My PT has gone but double vision is still there. My first 3 days post op were a nightmare, I was blaming myself that I agreed for surgery, headaches were awful, no medication ever helped. I lost almost 12 pounds, it was hard for me to even speak, because my jaws were in pain. My BP went up and down the night after surgery. Now I am better but not the same person I was before the surgery. Neuro said it needs time to heal, my nerves have to find the way to each other. Will see,
Two weeks post surgery is very early. I’d expect plenty to be out of wack. The double vision can sometimes be due to increased pressure inside your skull, which is to be looked at rather than ignored, so I’d ask about that but if it was present prior to surgery may be due to something other than hypertension.
I’m sure you’ll get a lot better than you are today: a craniotomy is a major, major assault. It does take an unreasonable amount of time to get back towards feeling ok.
Let us know how you get on. And well done for getting through it!
Very best wishes,
Thank you Richard! I just can’t wait to be back to my normal life as soon as possible (( Yeah agree with you 2 weeks are just too early.
The other thing I’d say is that recovery is not in a straight line. At some point you’re going to feel like you’ve gone back a few steps. To some extent this seems to be “normal” (i.e. happens often). Anything you’re concerned about is important to discuss with the doc or the nurses or whoever you’ve got as a contact point (sometimes, your GP). Who knows which of those odd moments or days or weeks are to be expected and which are a sign of trouble? I don’t know, so the only thing is to ask and get used to which ones the doc is not worried about and which ones they are.
Honestly, it took me about two years to feel back to “normal”. A lot of the pain went within a month or two but I still felt quite odd and I had some definite “hmm, this feels like a step backwards” days at about 6 months. So it’s a longish game.
Some people seem to get better much quicker. Some people take a lot longer (and obviously some people have ongoing impacts from the AVM or a stroke or the surgery) so it’s impossible to forecast but
Lots of love,