Arteriovenous malformation (AVM) and Epilepsy

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PFunk

PFunk

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So I had my tri-monthly appointment with my epileptocologist. We were shooting the sh_t, talking options for increasing meds, a little bitch bitch bitching and having a grand old time. At one point, I mentioned that my grandfather had an AVM (see link below). Basically it’s a place in your circulatory system where veins and arteries joint and bipass the capillary system. My grandfather had this on the back of his neck/base of his skull. Apparently if its located in the brain one side effect is seizures. The doc wants me to take another spin in the old whirly magnet to see if they can find anything. Apparently they can take even higher resolution images than my first two mri’s. He said its definitely worth looking into. Interesting…. but I don’t have my hopes up. I’m assuming I’ll be shelling out a bunch of cash for a pretty picture of my brain. If you go in with low expectations, it can only get better. :D

So has anyone else heard or dealt with an AVM. I’m assuming no but give a holla if you have…. Even if your reading this 5 years from now.

http://en.wikipedia.org/wiki/Arteriovenous_malformation
 
Interesting, never heard of that before.

Yup, a fancy pic of your brain. Cha-Ching!
 
They say I have a Venous Angioma, which is cluster of veins draining into a larger vein or somesuch. Its on the same side of my head has my seizure focus, but the neuros all said it doesn't mean anything with regard to my treatment options. I got the feeling that weren't sure if it was related to the seizures or they felt even if it was related, it would be too dangerous to try and deal with surgically for fear of stroke.

They told me there was no other danger as it is not a cavernous angioma or anything like that. So, it didn't end up doing me any good one way or the other.
 
I have a small pulmonary arterial venous malformation. Apparently if I ever have a bleeding nose that doesn't stop then I should go to the emerg.
As far as I know it is something that I could have gone my whole life without knowing about or having it cause any problems but they discovered it during all of my diagnostic workups. If it was larger then it would be more problematic but even then there are surgical corrections they could do on my type. But mine is pulmonary rather than within the brain structure.
I think if anything it may be make me slightly more likely to have a stroke or something.
Tough call. I wonder if it was something major if it would have shown up on a MRI already? If they do find it is an AVM then is there anything they could do about it? Or would it be more like discovering a potential cause of your seizures without any action after the fact? Although finding answers is always reassuring.
 
Dignan; Thanks for responding. Have the doctors located your seizure focus to rule out that they aren't being caused by the AVM?

LJ-Bain;223703 Tough call. I wonder if it was something major if it would have shown up on a MRI already? If they do find it is an AVM then is there anything they could do about it?[/QUOTE said:
LJ; My doc called this weekend about the meds increase and I asked him the same questions. He said even with a very small AVM, he would change my treatment approach. He thinks the chance are small it couldnt hurt to look if I'm up for it.... so now its up to me. Why does everthing cost so much f_cking money. I'm so sick of this crap.... all of this.
Click to expand...
 
I wish that money and health were not so intrinsically linked nowadays. It seems cruel and prejudiced. To have a change in your treatment dangled in front of you must make it feel like perhaps that this has the potential to be THE answer for you even when the chances are small.
 
I found that the information from the site wiki very interesting. I wonder, just wonder, if I infact had and "AVM" and not a growing Aneurysm. Based on the symptoms prior to having my anerysm rupture. I comlained of all of them. scarier yet, Im starting to experience these things all over again. the vertigo, tingling sensation, sounds and hallucinations? Even, so, aint a whole lot I can do about it. I could tell them what I think and they just tell me to take my lorazapam.

So, how soom will you be doing test? and please keep us posted?

thanks for sharing,
this topic was very imformative to me.
 
P-Funk said:
Dignan; Thanks for responding. Have the doctors located your seizure focus to rule out that they aren't being caused by the AVM?
Click to expand...

To answer your question, I'd say yes and no. This was identified a long time ago, and I sought a neurosurgeon through my neuro at the time. I was told that the avm was in the same general area of my seizure focus, but it was never confirmed to me whether it was the exact cause of my seizures (and I pushed this strongly at the time, since I wanted an answer). Mainly, I was told that they didn't consider my condition to be severe enough to warrant surgery, so that was the end of it.

I wasn't told if it was because they thought surgery was too dangerous (due to the cluster of veins) or because they felt my seizures were simply well controlled with meds.
 
If you have an AVM that's causing your epilepsy, there's a chance that the AVM could be treated with radio-surgery and you would be seizure-free -- that's probably why your neurologist wants to rule it in or out P-Funk.
 
Thank you everyone.

Nak - radio-surgery eh? According to Wikipedia it doesn't sound that bad. I thought I would be a more invasive surgery, which would be a non starter. Well damn, now I hope they find something but I don't have my hopes up.

Mary - I'll get the MRI this spring or summer. My wife and I are about to have a little girl so we have to figure out how our insurance will change. I was going to say screw the damn thing but that didn't go over well. :p
 
Ok, I may not have an AVM after all. I re-researched some online about Venous Angioma and they classified it as a DVA (developmental venous anomaly).

Maybe this explains why they felt like mine was inoperable or not related to seizure focus. (although this was probably 18 years ago when they looked at this on me, and I never got a clear answer on whether it coincided exactly with my seizure focus other than I know it is on the same side of my head.)
 
P-Funk said:
. My wife and I are about to have a little girl
Click to expand...

WOW!!!
CONGRATULATIONS!!!!

I wish you all the joy and happiness in the world. I also wish it works out for you all the way around. GOD Bless you and your family!

********************************************************
even when we go thru somethings, joy can still be found in the mist of it all.
 
LJ-Bain said:
Tough call. I wonder if it was something major if it would have shown up on a MRI already?
Click to expand...

NO NO NO. the only reason i am where i am (answers, surgery etc.) is b/c my 8th mri was done by a different radiologist from a bigger city who came in to do shifts for 3 weeks at a time. she had them do different 'slices' than i'd ever had and that's when the lesion was found.

they can always dig further/do different views. i had no idea until then, and was so crushed that the 7 prior radiologists had missed it. again, changed the course i was on.
 
Thanks Mary!! Its super exciting :D

Q, I was already told by the wife that I'm getting that MRI. So that settles that :). It took 8 MRI's? Damn! I guess I never thought to much about how they take the MRI's. Now I'm going to bring that up to my Doc. Thanks!
 
qtowngirl said:
NO NO NO. the only reason i am where i am (answers, surgery etc.) is b/c my 8th mri was done by a different radiologist from a bigger city who came in to do shifts for 3 weeks at a time. she had them do different 'slices' than i'd ever had and that's when the lesion was found.

they can always dig further/do different views. i had no idea until then, and was so crushed that the 7 prior radiologists had missed it. again, changed the course i was on.
Click to expand...

Makes me wonder if I should have them take another look at my venous angioma and see if it has any connection to my seizure focus or if they can do a different view of MRI. Of course, that would mean one more thing the doc wouldn't want to do or feel is necessary, and I'm worn out from fighting them over med issues as it is..

Ugh.
 
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