Quantcast

AVM Survivors Network

Can I expect to make a full recovery?

#1

I have a davf and will need treatment soon. Is there any chance I can return to life as normal after embolization, or will I likely have some issues introduced?

#2

Taco,

Yes of course you can return to life as normal. It’s not worth thinking about the alternate. It might take a couple of shots – I forget if you’re having an embolization or a craniotomy – but I’ve had a DAVF embolised and life is pretty good. I was allowed to drive again last summer and I don’t have any deficits / impairments.

I’m not convinced that my one shot got everything it needed to, so I’m still nagging at the doctors to make sure I’m fully fixed / safe but do I do most normal things? Yes.

There is always a risk of complications but there’s a very good chance of it getting fixed and just restarting life as normal. That should be your ambition and focus. Put the negatives out of your mind.

Richard

1 Like
#3

You’ll be totally fine! After two embolizations my DAVF was sealed with Onyx. I live totally normally. Only hear a faint pulse when i press my ear to the pillow, but nothing worth even complaining about. Occasional twinges in the area i had mine, but again nothing even remotely life altering!

Very best of luck with your treatment!

1 Like
#4

You guys don’t have any visual deficits or anything?

1 Like
#5

No deficits.

There’s definitely a risk to peripheral vision if you’re tinkering around in the occipital lobe and we have at least a handful of folk here who have lost some peripheral vision. If it’s in your dura mater, I think the sight impairment risk is lower but it will depend on where your AVM / AVF is recruiting flow from.

I’ve got some other symptoms post op that I’m still trying to get checked out. I am still doing everything I want to do. I have some days when I am much less sure I’m all fixed and other days when I’m better, so I am getting checked out that there is no remnant of my AVF left that needs fixing. I’d say, so long as there is nothing left in there that could be dangerous to me, I can move on with life ok. If there’s still something to be glued up, I want that bit glueing as well.

I’ve also read of people with perhaps smaller / less flow DAVFs than me who’ve come out the other side of an embolization and were back to normal in a week or two. Properly normal.

My theory with my residual effects is that I had a big divert going on. The doctor said as much. And fixing the divert has really changed the pressures in my head. Maybe it is increasing some arterial pressure that used to pass my ear unnoticed but now that I’m fixed, the increased pressure in the artery I can actually hear. Maybe that is giving me the slight balance off feeling too. Maybe accounts for the high pressure feeling in the top of my head. But all driven by how “wrong” it was before. If so, it is taking some getting used to. It could be partly or largely psychological. I don’t know.

No deficits. I can do everything. I’m not exercising seriously and I need to do some decent exercise but that’s the only thing I’m not really doing at the moment.

So be positive. It can be a complete fix. No side effects. It can bring some deficits but if it is important to remove the stroke risk, it is your choice as to whether to act or not. You’ve got risks whether you do something about it or not. You’ve just got to choose which risk you’re ok to take. It might be you have to readjust to different pressures in the head.

Hope this helps,

Richard

#6

In my case, the sigmoid sinus is occluded. They say they can’t spare that vein and it’s not standard practice to do so. Were you left with a permanently blocked vein also? I’m curious to how that works out long term.

#7

My DAVF was discharging into my right transverse sinus. I also have a diminution of my right transverse sinus – initially, the MRI indicated a potential thrombus instead. What my interventional radiologist told me was that he had occluded the artery that was flowing into the sinus and opened the diminution. I’m not clear that he put a stent in, only that he opened it out a bit.

Are you saying that one of your sigmoid sinuses is already occluded? I can imagine the effect is similar to my diminution. Obviously, one can do ok on one TVS or one sigmoid sinus, as the former flows into the latter and everything joins up at the saggital sinus / straight sinus / transverse sinus junction, so far as I can tell, so if you’ve got no flow on the left, everything can drain back to the heart on the right. But I do get the impression that it is a blockage such as we have that exacerbates or causes the DAVF in the first place.

When I was in hospital recently, there was a more aged patient who had what I took to be atherosclerosis and her doctor was proposing to have a look at her under angiogram with a view to drilling through the plaque of her atherosclerosis to give her a through flow again. Now, that was in her leg, I think, nowhere near her brain.

My doc did say he might need to “sacrifice” my right transverse sinus in order to stop off the DAVF but obviously it is better to have flow on both sides. I got the impression it was perfectly ok to manage with one side, if necessary, a bit like people who only have one kidney. Everything depends on the remaining kidney / vein but it’s a viable way to go if really needed. One of the considerations the doctors have when closing off an AVM is that there needs to be sufficient “collateral flow”, in other words that there is an alternate route for blood supply and blood drainage when the AVM is treated. Otherwise we would have necrosis where no flow is occurring. Remember, arteries and veins are vessels, not the means of oxygenating or providing nutrition to tissue… it is the capillaries that do that part, so it doesn’t matter how stuff flows, as long as each capillary bed has a supply and a route for drainage.

I’m not clear what your current situation is and what is proposed. Tell me a bit more. Use private messaging if you prefer.

Hope this helps,

Richardn

#8

I had a visual aura (fortification spectrum) right after I hit the ICU after dAVF embolization. I always had good peripheral vision, but as per a test 2 days ago, I have lost all peripheral vision in the upper right quadrant of the left eye. I had just noticed something “funny” with my left eye vision. I don’t know if this is related, but my dAVF operation had a snag-- they accidentally punctured the MMA (middle meningeal artery) and most of my head-metal is now in the the corresponding MMV. The middle meningeal arteries often anastamose with the opthalmic arteries, and the eye doc thought it quite likely that snag was the cause of my peripheral vision loss. The problem is exacerbated by my pre-operation situation: My left eyes was extremely dominant, as my right eye points down too much for the images to fuse. Now, if I look up for any period of time, I risk getting an aura, which makes it hard to see. I’ve adapted by tilting my head back when I drive, so my right eye produces most of the information for my brain. Perhaps the dAVFs (which were created in Feb 2018) is the real culprit; but I had just 2 auras over 6 months before, and have them almost every other day since the operation.