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AVM Survivors Network

Risks of embolization and peripheral vision loss in right parieto-occipital area

Hello. I have an AVM and it is in a eloquent area. Spetzler-Martin grade III (some doctors say grade II)
ABOUT PATIENT:
39 year old.
Male
Health is excellent first time I’ve been to doctor in my life.

SYMPTOMS:
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
2) Hoag.
Anybody with experience with HOAG or UCI?
In Hoag the Dr name is Dr Christopher Baker
in UCI the Dr is Dr Shuichi Suzuki

DOCTOR 1.
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

DOCTOR 2.
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.

QUESTIONS:
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!

From the research I read before my craniotomy any procedure that reduces the blood flow in the area of the optic nerve can possibly lead to peripheral vision loss; unfortunately that’s going to be a risk with almost any procedure you have in that area.
yes I found yes I found most neurosurgeons are overly optimistic I went with the one that hit me between the eyes with the truth and didn’t sugar coat it… I always prefer blunt honesty and knowing my risks some people prefer a more optimistic approach… stay strong and best of luck!

So that’s the question.
Embolization + Gamma Knife is not more risky than Gamma Knife alone (purely in terms of peripheral vision risk).
The neurosurgeon (Dr Sue, who wanted to do craniotomy) said Gamma Knife will still have the same risk of loosing peripheral vision as it essentially ‘burns’ a ‘hole’ in my brain.

Another question
If I lose my peripheral vision will I lose it as soon as I open my eyes after embolization or is this a gradual thing after?

my best guess is it you would lose it as soon as you open your eyes as embolization stops the blood flow immediately where gamma knife would be a slow progression so that one might take longer to notice; when when my AVM ruptured the loss of vision was one of the first signs other than the headache that I knew something was wrong as the bleed was a long my optic nerve.

I see. He did mentioned he would close 70%-80% of it. To prevent a stroke. So I think he is aware that just blocking 100% of the blood flow is a bad idea. I have an appointment with another interventional radiologist tomorrow. Let’s see what his approach would be. He also told me my size (3.5cm) is not really advisable to do one embolization. So did you lose all your peripheral vision or just some of it?

The Dr that wants to do craniotomy told me 30% risk of peripheral eye vision, but he told me “majority of people recuperate it”.

Can you share a little bit about your loss and if you recuperated?
He told me only 5% suffer permanent loss of peripheral vision.

well your process is going to be a controlled situation so your chance of recovery is fair to good I lost mine when it ruptured and it took out a good part of that area of my brain so mine has not recovered, I lost left peripheral vision and peripheral vision down out of both eyes; it sounds like your doctors I know they’re talking about and are giving you a reasonable assessment of your probabilities so I would listen to them.
after the rupture when I went in for the craniotomy to remove the AVM they told me I had a 25% chance of dying and a 40 to 50% chance of being blind so needless to say I was pretty uptight before the surgery but I also knew if I had another rupture it would kill me so I had to go with the odds; listen to your doctors take a deep breath and go with what’s best for you… it’s our brain so there’s always some risk unfortunately…

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So what I understand is that embolization is less risky than surgery. Surgery they remove the tissue out. Embolization they stop the blood flow. Brain re-learns. I do not understand why it would just out of nowhere just stop working forever. Seems odd. Anyway I have enough information tomorrow to ask to the interventional radiologist.
The most important question is how many AVMs he has done in his career.
I need to find out which one of the two has the most experience with this.

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rafarat, please review my posts regarding embolizations. I had 4 over ten years ago. I have read so many good things about Dr. Martin @UCLA since you’re in Socal. Not sure he is still practicing, but worth getting his opinion. My embolizations actually IMPROVED my peripheral vision issues due to re-routing the blood from my avm to other areas of my brain. My avm is much larger and only required treatment at age 35. No need to rush into any treatment. You’ve gone 39 years with your avm. Best of luck with your decision. Many of us here can help with your unanswered questions. GK

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Well the problem is COVID-19
That’s the single biggest problem
I can call UCLA to find out if they are taking new patients.
I will call as soon as they open today.

I have two options
HOAG - Dr Christopher B Baker
UCI - Dr Shuichi Suzuki

Other question
If Onyx goes to the right place
And if there are no bleeding in the procedure

That shouldn’t cause peripheral vision loss right?
Dr Suzuki says 30% chance it will affect it
And 5%-10% chance it will

He is talking about my left peripheral vision
He also insisted my mom be at his office next visit

Anybody knows a good interventional radiologist in Orange County, LA County, Riverside County?

Also, embolization is it done with local anesthesia or with general anesthesia?

Onyx is a tricky substance and should only be used by a neurorad with experience and confidence. Did you see this post?Importance of having an experienced neuroradiologist for Embolisation w ONYX!

angio starts as twilight anesthesia then general for embolisation portion of procedure…

Okay so there’s no way to be awake so when they put onyx you can tell them if it’s affecting your vision or not?

Embolisation is risky even with an experienced interventional radiologist. there are other risks other than blindness. Serious short term memory loss for example. Catheters used for the embolisation can get stuck in your brain!! Don’t rush in for treatment if you don’t have to.

Well that’s what the doctor is saying that I can do Gamma Knife without embolization. My sister had a AVM and I spoke with her doctor. He refuses to suggest anything else than embolization and then do another angio and see if I can then do Gamma Knife.

It makes sense.
I do not want to have a stroke.
Die.
Hemorrhage in the brain.

So embolization is less risk than having that thing in my head.

I am not waiting for that thing to pop.

After 70-80% of blood flow is reduced, the yes, we can leave the last few millimeters to Gamma Knife

But the flow has to stop.
The nidus has to stop receiving blood.

That is the priority.

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Have you visited UCLA yet?

No I am going to call today

Rafa,

Hi. Everything the guys are telling you is good.

There is a risk associated with any procedure. I’m less sure of the risks associated with gamma knife but I guess they include brain swelling (which seems quite common) and zapping areas that are not needed, creating a wider killing-off of tissue than maybe you need. It is very focused but I believe collateral damage is the main risk. So. If near your visual processing, could affect your vision temporarily (due to swelling) or permanently (due to zapping something nearby).

Embolisation risks are: the glue, etc. may be deposited in a place unintentionally, perhaps because it becomes detached from the end of the catheter and your blood flow pumps it away from where the doc has tried to drop it. The catheter is guided to where it is needed by a little bent wire that the doc uses to turn the corners: the guide wire can puncture your blood vessel, giving you a haemorrhagic stroke. I guess also, the catheter can come across a narrowing of the artery and cause an ischaemic stroke if it wholly fills the space in the artery. Hence, embolisation is used not in the tiniest of vessels. There are always risks associated with the insertion point for the catheter (usually into the femoral artery in your leg, or into your wrist). However, my view is that a craniotomy has much bigger risks in terms of collateral damage than either of these treatments.

Embolisation is often used before a craniotomy, to reduce any bleeding that will occur during the craniotomy. However, it is also used on it’s own; less so, it seems in the US.

I had an AVM in my dura mater meningeal layer, in the right occipital. Very much on the surface of the brain. Mine was closed off with just the embolisation procedure. All seems good 3 years later, though it took me a long time to feel well again.

I hope some of this helps.

Best wishes,

Richard

UCLA is supposed to have a very good neuro-interventional group, as does UCSF.

Yes, that’s exactly what they can do. Inject a substance to test the effects if a certain area is embolized. I think the issue is not where to block blood flow, but rather how to guarantee control of Onyx material. Make sense? GK