Hello. I have an AVM and it is in a eloquent area. Spetzler-Martin grade III (some doctors say grade II)
39 year old.
Health is excellent first time I’ve been to doctor in my life.
I felt ‘more flow’ on the top of my head.
Tingling in my forehead.
Thought I could get a stroke.
Surprisingly the AVM drains to the top of my head, so I am lucky I got the diagnosis before.
It doesn’t mean I want to sit and think 3 months though.
REPORT FROM MY ANGIOGRAM:
Angiographic evaluation confirms the Spetzler-Martin grade III right parieto-occipital arteriovenous
malformation with the dominant arterial contribution from the right posterior cerebral artery parietal
occipital branch and superficial deep venous
drainage predominantly to the superior sagittal sinus.
The nidus itself measures:
1.4 x 1.7 x 3.4 cm
BACKGROUND AND RECOMMENDATIONS:
My mom worked 12 years in a hospital in CHOC Orange County, California. So we wanted to do surgery with doctors that are familiar. The directory of neurosurgery Dr Louden recommended Dr Suzuki for embolization. He said my AVM is ‘very pretty’ for embolization and it only has 1 feeder and ‘simple architecture’
I have two options to do embolization + Gamma Knife in Orange County: 1) UCI
Anybody with experience with HOAG or UCI?
In Hoag the Dr name is Dr Christopher Baker
in UCI the Dr is Dr Shuichi Suzuki
HE IS HAVING PROBLEMS ASSESSING THE RISK:
I was going to sign the release at UCI. Dr Suzuki however said:
“*Embolization is as risky as surgery. It will block 80%. *
It also has risk just like surgery. You have 30% risk of having peripheral vision problems.”
I was shocked.
30%?? That high?
The problem is that Dr Sue (neurosurgeon) said it would be better to do embolization + surgery instead of embolization + gamma knife. Therefore, when he discussed this with me, he mentioned 30% risk of having peripheral vision problems. Dr Suzuki heard that, and since then he says 30% risk of having peripheral vision problems with embolization as well!
So last week I asked him why 30%, and he mentioned because if he puts glue in the wrong places it can damage optical nerve. Fine, I said, “I’ll sign the release”
Today I went to sign the release, and I asked again (just to be clear), that if glue is going to the right places, then no risk to lose peripheral vision right?
And he said “Still 30% chance even if glue goes just to the nidus”
I asked why?
he said “Because blood send nutrients to the brain tissues and your brain blood flow is going to change. So less blood going to your brain tissue can affect your peripheral vision”
Dr Baker said the risk of embolization is 2%-3% of stroke. During first 24 hours. This was before doing my angiogram. He also mentioned angiogram had a 0.3% risk of stroke. I have not discussed how risky is embolization, but that doctor seemed a lot more precise in giving risk and understanding possible outcomes. However, this was before my angiogram, so only had an MRI back then. I will update this post later with his opinions.
WHAT I SEE ABOUT EMBOLIZATION RISKS AND PERIPHERAL VISION:
I checked 48 responses to this website. One member lost peripheral vision (Keith_Hosford) and another member (shellskids7). Not trying to single anybody out. It seems to me like peripheral vision loss is mostly related to craniotomy and sometimes because of Gamma Knife, and possibly because AVM is affecting the optical nerve. But I really do not find much relationship between embolization and peripheral vision loss. And I have no idea where Dr said it’s 30% likely I have some peripheral vision problem just from the embolization.
MORE INFORMATION ABOUT THE REPORT:
RIGHT VERTEBRAL ARTERY:
An arteriovenous malformation nidus is identified with
direct early venous drainage almost entirely to the superior sagittal sinus. There is no deep venous
drainage identified but there is a small
cortical venous branch that ultimately drains to the vein of Labbe near the right transverse sinus while
there are other smaller parietal cortical veins that opacify and drain into the superior sagittal sinus. The
dominant arterial contributory is the
parietal-occipital branch of the right posterior cerebral artery. There is a lesser contribution from the lateral
occipital branch of the right posterior cerebral artery that may be indirect
RIGHT INTERNAL CAROTID ARTERY: The right internal carotid artery is unremarkable in course and caliber
through the skull base. The posterior communicating artery is noted to be very robust in caliber with partial
opacification of the right posterior
cerebral artery and the AVM nidus. There is a robust lingular branch of the right middle cerebral artery with
2 parieto-occipital terminal branches that also contribute to the AVM nidus, possibly indirectly. Again, no
intracranial aneurysm is
identified. Parenchymal and venous phases are otherwise normal.
First thanks so much for all of you who read this.
The questions are two
1) What are the risks of my first embolization of my life at 39, to leave me with permanent peripheral loss?
2) What are the risks of my first embolization to give me with some peripheral loss?
3) Is it normal that the Neurosurgeon is so positive about my outcome of this AVM, and then the Interventional Radiologist he recommended has a different opinion?
They do not work in the same hospital (one is CHOC, another one is UCI) but they both say they work together. However one is very very confident the other doctor is saying what seems like worst case scenarios worst case probabilities
Thanks so much!
I am doing my best (considering the pandemic), but it is most definitively a difficult decision especially when I have so many different opinions.
Thanks once again!