So I’ve just been diagnosed with a large and significant Dural AV fistula on the lateral and sigmoid venous sinuses (back left of head). Firstly does anyone know what function that part of brain controls? Also how dangerous is the cerebral angiogram? I’m terrified and due to have this DSA test next week. They have already done a dye CT scan but need a clearer picture before deciding what they need to do. The thought of a catheter going up my artery from groin to brain scares me so much. Any comments/thoughts very welcome. Thanks.
Hi there…I am scared as well…my16 year old son is getting the same procedure next week. He got diagnosed with AVM 2 days ago and we are going with the embolisim and then immediate removal via craniotmy. I am terrified too.
I’ve had two angiograms, two MRIS, three CT scans and Gamma Knife treatment. The first angio I had I don’t remember as it was when I was first admitted to the hospital when my AVM bleed and was discovered. The second was about two months later as we were determining treatment. The second I recall fully, and was scared in thinking about it. The staff was incredible, put me at ease and I didn’t feel a thing. They went through all the risks clearly, but my AVM and treatment of it was a much bigger issue for me. I looked at it as necessary and certainly wanted the best decision on future treatment. They used a product called an angio plug and I was walking around at two hours.
Angio is the diagnostic gold standard to my knowledge and does not reflect treatment. They did one on me before my embolization to see if it was feasible. They made a small incision by my upper thigh/groin and went in through there. They put you under and I didn’t feel a thing. You should be okay, its not a treatment. Its also the same way the go in if your getting an embolization. I’m going to post a couple youtube links that you might find useful. Good luck!
Thank you xx
Tell us a bit more about you. Are you young, are you (I’m going to say) “less young”?
How have you discovered your AVM? Has it been giving you some issues, or have you discovered it by chance?
The area of the brain you’re describing sounds to me like your occipital lobe or your temporal lobe, so you might look for people’s stories relating to AVMS in those areas. Mine is in a similar place. I’ve been told it is in my right occipital but with feelers out past the top of my ear, so perhaps straying towards my temporal lobe. When I saw my MRI, it didn’t look big to me – being in my dura mater – but reaching round quite a way.
I’m 50. I’ve probably had it in there forever but have only had symptoms from it in the last year, really.
So tell us a bit more about you and how you’ve discovered it. It might help us to help you.
Hi. I’m 51 (just) and it was discovered last week. But I know it wasn’t there in 2009 as I had an MRI then and nothing was found. I’ve been having terrible migraines, chronic daily headaches, exhaustion etc for years which was why they scanned me in 2009. We moved to London 6 months ago and a new consultant just wanted to check my pituitary so booked me in for another MRI. Pituitary is ok but this bloody Dural AV fistula was found. Had a dye CT last week and the result is ’ a large and significant Dural AV fistula based on the lateral and sigmoid venous sinuses’. It’s at the back of my head left side and goes quite deep. I’ve seen Mr peter bullock and ms Mary Murphy and both agree I need to deal with it. Having the angiogram probably next week with dr maneesh patel an interventional neuroradiologist. My main terror (apart from death) is having the glue embolisation and waking up with some form of brain damage. And from what I’ve read one embolism probably won’t be enough and I will need more treatment. I just want to run away and hide. Currently living on high doses of prescription painkillers for the headaches.
Not sure how to help you. I want to encourage you that embolisation is a cinch. I’m not sure it is a cinch but we’ll both be a asleep for it and we’re in the hands of reliable people. The chap I’m seeing in Nottingham was so calm, quite “scientific” in his bedside manner, very measured. All of that makes me feel he knows exactly what he’s doing. Who better to trust your life to (for as you say, we do need to do so). I think the nightmare would be some kind of second-hand car salesman or someone full of jokes. No, I can trust my guy.
As you say, it might take more than one procedure, the success rate I’ve read recently is not brilliant but I’m not sure we have a choice. I’m happy with the idea of what is “extreme keyhole surgery” than open cast mining. Don’t fancy doing that at all.
My other view on it all is I’ve made it nearly all the way to 50 without worrying about my health. I think that’s pretty good. To have a “challenge” at 50 is not what I want but I can think of worse, can think of other relatives with a poorer hand of cards dealt at a much younger age.
The biggest challenge I’ve had so far is taking other people with me on the journey. My family and work friends just want me in the hospital and out and fixed 100% yesterday. I’m struggling to get them to slow down a bit and consider I might not be 100% me when I come out so don’t rush me into this. However, I’m expecting to come out 98% me. I’m not looking to be overly dull about it.
It’s difficult to know what things to start to put in place before I have the op. I want to be 98% positive about it, as I say, but also there is that risk – do we talk to our wife or son about the big risk? My wife has no real idea about finance. My son I want to tell a thousand things if I think I might not make it through with good success. Very difficult to know what to talk about and what to ignore, hoping for a great outcome. But I hold in my mind 98%+. I’m not going much lower than that.
Is there anything we can do to get you nearer the 100 mark? I’ll try if I can. It’s definitely worth it. You’re definitely worth it.
Life’s not boring, at least! Wot larks, Eh? Wot larks.
Very best wishes,
Thought no 2… one week post discovery is a nightmare. You’ve just got on the rollercoaster. It’s an interesting set of loops but it does calm down. Honest.
There are some really good stories out there. The idea of the surgery is to sort out the migraines, headache and tiredness. That would be great, wouldn’t it?
We’re here to help you through. Not just me. The whole community. There are lots of people ahead of us.
You have a fab attitude. I’m not quite there yet!!! My main fear is the potential for neuro issues. I’ve read that there can be deficit with the embolisation and that puts me off. I’m beginning to think that maybe just living with it is the way forward. I don’t want short term memory issues, loss of peripheral vision, weakness etc. And it doesn’t seem to always cure the headaches!!! I’m very confused.
I had this procedure done. They will give you something like morphine and you wont feel a thing. The worst part for me was being in a room with my bits exposed at 14, while nurses wondered about :). You’ll get through this.
The best thing I’ve found to take away or take the edge off headaches is to keep my blood pressure low. A neurovascular specialist in hospital told me at the beginning of November that if I smoke, I should quit, alcohol quit, coffee / caffeine quit, chocolate quit. I’ve cut out these kind of things and the turnaround in November was striking: it felt like an instant fix.
Since then, my AVM feels like it is gradually getting bigger or more extensive and I’m very slightly losing the battle with it to feel well. So a couple of weeks ago, I felt like I’d regressed back to the beginning of November. The last 2 weeks, I’ve cut my working hours back to 6 a day with a long lunch and an early finish and I feel back into “good” again. I still get dizzy, mostly when I am walking, and lying down at night can be difficult as the pressure in your head changes when on a level with your heart but it is all blood pressure related. Keeping that exactly where it should be keeps me well. I’d say I’ve not had a headache for ages. I’ve had the “edge” of one but feel I’ve kept it at bay.
I’ve got @Bill4 to thank for my ridiculous positivity and the other guys who helped me through my first week with great stories of their success. I think Bill had a craniotomy rather than an embolisation yet he has had a fantastic outcome. I’m sure that’s no understatement. So, focus on the positive not the negative.
I agree that I’ve read some stories where someone’s situation pre op and post op don’t differ enough to encourage me; and if I worry about that, it would be a concern that in private medicine there is every incentive to do an operation because the medical team are earning money off you. I hate going to the dentist where it feels like the dentist can count his next few golfing holidays in your mouth! If you’re progressing through the NHS, the opposite is true: there is every incentive to do just enough to get you through. That might lead on to multiple operations perhaps and very very long waits but I like the idea that we go for the less invasive, less costly, less risky stuff first. It feels the right balance for me.
You’re in a new world. Its quite a shock but you’re in good hands.
Very best wishes,
This is a scary discovery. I have an AVM that drains into the sigmoid venous sinuses, but on the right side. It’s near my cerebellum and brain stem, critical for balance, movement, etc.
Regarding the cerebral angiogram, I have had two. One to verify that I had an AVM and one the day of my gamma knife procedure. I had zero problems with them, and actually flew the very next day after the GK procedure.
It is somewhat painful when they inject the contrast media but the procedure itself is almost risk free. My physician said that only 1-2% of the people have any issues.
Hi! That sounds just about like what I had Mine was a subdural AVF in the same place. I too was worried about the angiogram but it was ok. They didn’t give me anything for pain but something to dull it. It took about 30 minutes I think and they talked to me thruout They were able to pinpoint the exact location and problem. It was the worst kind, too.
They first used a substance that was injected in thru the artery about a week later. Thought they got it all but it did come back about 8 weeks later. I ended up with a craniotomy. Now I’m totally good to go.
I believe that area controls motor functions but not exactly sure.
Thanks. Wow I’m so happy for you. Are you completely better with no symptoms at all? Nothing from the craniotomy?