Yes you will have alot to be thankful for!! I feel the same way! Having what we do you learn to live life to the fullest and treasure every moment you have with your loved ones! Keep me updated on how your doing and I will keep you in my prayers.
I was diagnosed 2 years ago with a avf in my brain. My neosurgeon wanted me to wait until something went wrong before they operate. I chose to go to Toronto Western Hospital where they deal with avfistula. I will be going to Toronto in June for a procedure to get rid of the avf. I do have a swoosh in my ear and it is worse at night. I go to sleep with the TV on and take 2 advil to help me sleep. I was told at my last appointment that it is worse but still has not attached. Not sure what that is.
HI June,
I’ve been away from the AVM site for a couple of years now, but will try to
assist you if I can.
If the swooshing (bruit) changes in intensity, I think that could be a
warning sign and might warrant a call to the DR.
I am not at all familiar with AVM fistuala, so I can’t comment on that.
As you probably are aware, there are 3 methods to treat AVM (not sure if
that includes fistuala or not):
-
Pinpoint radiation (known as cyberknife, proton beam radiation, or other
names). This requires the AVM to be "mapped’ accurately via MRI/CAT scan.
Purpose is to radiate only the AVM, not healthy brain. Radiation shrinks
blood vessels and toughes vessel walls, or so I’m told. -
Embolization. Also requires mapping of the AVM to pinpoint the source
of feeder arteries via a arteriogram. Suspected feeder vessels are
temporaily blocked by inflating a ballon in the cathetor. If a neuro exam
shows no loss of function, then a superglue type stuff is injected at the
sight and the blood flow is stopped. -
Conventional/Microsurgery, to surgically remove the AVM.
You refer it as “attached” and I’m not familiar with that.
I am far from an expert on these, other than my wife had a brain AVM.
Best Wishes,
Ron
A fistula is a vein that attaches itself to an artery and the blood flow is redirected. Been there done that. You mention that with embolization superglue is used. Not always. An embolization can be achieved with coils inserted into the offending fistula to block its blood supply. That is what I had done. 12 coils were used. They kind of scrunch up together and look a bit like a steel wool pad on the mri and angio. Amazing.
Thank you for your help.
Not sure what they will be doing. I know they will be going through the artery and maybe both arteries. I also know I only have to stay in the hospital one night as long as everything goes well.
Hi June,
Yes, you are so correct about using coils. I was mostly familiar with what
my wife had done., which was glue.
Best wishes to you.
Ron
June,
If it helps, I’ve got a Dural arteriovenous fistula in my right occipital lobe. I’ve just had it embolised, using PHIL glue (but as the guys indicate, there are several ways to block off a fistula, so it doesn’t really matter to us how they do it). As you say, it is done using fine catheters inserted through a major artery and/or vein, usually in the groin (but may be possible in other places) and then navigate the catheter up to the affected area and block off the fistula.
I understand a fistula as a specific kind of AVM, with a knot (more like a crows nest, I suppose) of vessels that are flowing high pressure blood straight from artery to vein, without flowing through the capillaries.
Usually, the procedure requires a couple of days in hospital and maybe a week to feel normal again. I spent 3 days in hospital and felt rubbish for week 1, so so for week 2 and human again by week 3.
I’m not sure what the “attaching” thing is about. @JennyS is probably right. As well as my fistula, I had a number of “draining veins” which by Jenny’s advice had become “attached” (my consultant referred to them as having been “recruited” by the AVF) which were also embolised.
The procedure is called a catheter embolisation procedure.
Hope this all helps. Well done @Ron_K for chipping in: this was a very old conversation! If you want to ask more questions about a catheter embolisation, feel free to create your own Topic by finding the +Topic button on the home page or in a category and ask your own questions, rather than re-awakening very old conversations.
Best wishes,
Richard
Glad to hear. Last week I felt great. I was on steroids for 5 days. Now my legs seem weak. My head feels better. Thanks