AVM Survivors Network

DAVF embolization tomorrow at Cleveland Clinic


Kind of scared. I’m looking forward to having this thing treated, but I’m afraid of something bad happening.



You’re going to be just fine. I think you’ve made a good decision.

I was as nervous as anything of going into hospital. I had had an operation a year or two before my embolization, so I was perhaps more comfortable than you about going in for the embo – my previous op had been a breeze, no reason for this one to be any different (other than it being my head for Goodness sake!)

The best advice I can offer is that you will get through it. The team you see will look after you. All you have to do is turn up and do as you’re told. I’d say make sure you’re nicely hydrated tonight because you’ll need to lay off the fluids tomorrow.

Was it a breeze? Nah. But did I get through it ok? Yes. The idea of a headache for let’s say a few days is awful but actually, I don’t remember it being too bad. Sure, I had a headache but plenty of meds and it was all fine.

You’ll be fine. I’m sure you’ll surprise yourself. Honest. It’s a good thing to do. And don’t we live in such a fantastic age that your brain can be re-plumbed through your groin?

Try to chill out about it. All you have to do is turn up and do as you’re told. Really.

Very best wishes. Will be thinking about you Mon to Wed and expect to hear good news later in the week.



All the best tomorrow, and what Richard said! Look forward to hearing from you post procedure. Take Care, John.


@tacos4life Good Luck I hope it all went well and you are resting safely at home- let us all know how it went. The first time is always frightening. The 1st time my DAVF looked like a spider with 30 legs and I was like see I told you a spider crawled in my ear! Then my heart rate went up and they had to do the dreaded main line IV which I imagine what it feels like to have a heart attack. I told them they better knock me out before I punch one of them. The second time one of my friends who also worked for the hospital and was good friends with my surgeon was able to hold my hand. Much better the second go around/ - Sending healing hugs!


Still in hospital. I feel awful but it looks like everything went well. Will update later.


Its great to hear from you!

I’m sure you’ve done the worst bit… all you need now is for your head to calm down. Its got a lot of foreign material in it that means it is all a bit sore.

Well done!



I’m discharged now. Less than 12 hours after surgery. No headaches and no deficits. Transverse and sigmoid sinus were both occluded already. They had to find an arterial route. Onyx was injected and coils placed so there was no chance for the onyx to migrate


Sounds really good. Well done! I think you were finding the “do I?” / “don’t I?” / “dare I?” question really hard, so well done for having a go. If I can do it, anyone can.

Have a great week. Take it easy.



Good luck. I will say a prayer for you. I had (2) Onyx procedures & (1) Gamma Knife procedure two years ago.


Great news. Good luck on recovery. Know that I had this done 3 years ago and have recovered nicely. Feel happy every day that I am feeling well and that science has allowed us this opportunity to survive.


Here’s what’s new: When I’m just walking around, I get episodes of lightheadedness ot dizziness. It’s hard to define. If I’m lying or sitting, it doesnt happen. Anyone experience this? Does it pass after a while? I’m still not having any kind of headaches.

I also had to go to the emergency room over the weekend to rule out pulmonary embolism. It was hard to breathe, and I was in tons of pain. It turned out to be atelectasis (partially collapsed lung), and pneumonia, so I was put on antibiotics. This was likely caused by the long surgery.


Me, too. See Third Stage - Degradation Post Embolisation?

It is partly this that I am still checking out. I don’t at this point know whether it is reasonable to expect or indicative of something else that needs fixing. My doc’s view is all is good, though we are currently checking out my “internal auditory meatus” to see if there is anything to see. I’ve not had a discussion with the doc as to why he is looking there but I am guessing balance-related.

As I find anything out, I plan to share.

You’re pretty early in recovery and other than my step back in October, I feel as though I’m generally better after 6 months and again better after 12 months. I do feel I have periods when I’m less well. I’m starting to think that it could be when I have a cold or other health thing going on, that additional impact pushes me back into less well. I don’t know. I haven’t worked out a cause yet.

Hoping you are doing ok otherwise?



I was kind of hoping that I would return to normal life after a while. If I end up with permanent issues due to this, it will be really disappointing and depressing. I hope I’m not dealing with this months down the road still


Some people seem to get through it fine. My residual issues dont stop me doing anything, they are just disconcerting and I want to know if there is any danger left that needs fixing.

Otherwise, if it is all fixed / my stroke risk is back to that of a normal 50-something, happy days for me. Having the op is way better than a big stroke risk and I think much less invasive than a craniotomy and the sometimes need to stay on keppra long term.

You’re going through it at the moment. Be positive that you’ll get out the other side pretty good.

Very best wishes,



Did they put you on keppra at all? I’m on low dose aspirin for 3 months, is that pretty typical?


No. I needed tylenol for about 2 weeks, then nothing. Keppra is an anti-seizure med and I get the impression that with a craniotomy, the brain can get sufficiently upset with the surgery that some management / prevention of seizures is frequently necessary / wise for at least a while post op. So just glue seems a good option to me.

I’m a bit surprised by the aspirin: its used to dissolve clots but would be a no no with an AVM if it we’re likely to leak, so it sounds like you’re dissolving a bit of a clot somewhere and they are confident in your embolization.


They actually had me take aspirin the few days before surgery also. Seemed like a bit of a gamble. I think the idea is to prevent clotting.