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AVM Survivors Network

Need guidance for 12 inch left frontal lobe AVM

Hello, here’s my story and a couple questions that I would really appreciate guidance on.

My husband’s AVM was found quite accidentally in 2010 (he was 30 years old then) It’s in the left frontal lobe (area of speech and motor) - 12 inch. At that time, Dr Solomon from Columbia, Dr David Lang at NYU Langone and Barrow Institute in Arizona came back and recommended to just wait and watch and any kind of procedure/surgery is more risky than waiting and watching. To this date, he is Asymptomatic.

We have been getting MRI’s every year since then and getting the same recommendation to continue waiting and watching as the AVM didn’t change. This year when we got the MRI, Dr Solomon said that although he doesn’t see any changes in the AVM but said he saw “significant” dilation in the veins and recommends embolization and gamma knife therapy. We sent the CD’s to Barrow Institute in Arizona and they only recommend Gamma Knife Radiation and not Embolization and see minor dilation in the veins. The questions I have are below:

  1. Is there anyone here who has gone through embolization and gamma knife therapy on the left frontal lobe. Can they share their experiences with me please? Goes without saying this has been a horrendously stressful situation.

  2. With Barrow Institute in Phoenix, Arizona is there a particular doctor you would recommend? And/or if you can share their name and their assistant’s name that would be great.

  3. Considering these doctors are top ones, is there anyone else you would recommend we get a second/third opinion from? (We are also trying to get opinion/evaluate from Dr. Gary Steinberg in California but we live on the east coast so not sure who else can we talk/speak with on the east coast. I think Dr. Solomon is #1 on the east coast but would you recommend anyone else?

Hello -

My 2nd opinion at Barrow was a lifesaver - Dr Lawton is remarkable and his embo guy Dr Albuquerque took care of my AVM - he’s done all Dr Spetzler’s embos too in the past prior to his retirement.

Veronica is their contact/scheduler

Good luck !

Thanks :pray:t5: @positivecathy. Barrow is so process oriented and taking such a long time to respond and get back that it’s getting extremely frustrating. It’s almost like working with a government institute.
Let me see if I can speak with Veronica and hopefully she can help override some of these issues (they are taking 2 days to verify insurance, would not see the MRI scans without a radiology report, etc).

PGV

I can’t tell you anything about Barrow other than they do seem to be top of the list of neurology hospitals in the world and I’ve heard a lot about Dr Lawton and every thing top notch. You’re in the best hands.

I can say I have a much smaller but high flow dural AV fistula in the back of my head, which was giving me pulsatile tinnitus a couple of years ago. I went through embolization of a decent size area inside the back of my head and indeed on the outside and of the operations I ever fancy having to do, it was good for me, to the extent that if I needed a second go with the glue, I’d be there like a shot.

The pulsatile tinnitus will be blood disgorging into a vein that is then flowing back past his ear(s). I assume he is hearing it in both ears (like me) given a frontal AVM but it will depend on which vein is catching the outflow. Mine was playing into my transverse sinus, which then flows past the ear as the sigmoid sinus.

Embolization got rid of the pulsatile tinnitus, though I can hear other pulse noises in my head post op. I would say that the purpose of the op needs to be in your mind as “reducing the stroke risk” rather than getting rid of all the noise but his doctor will say how effective he expects the embolization to be.

I have to say, I wonder if you mean 12 inches or whether you might mean 12 centimetres. To my mind, a whole head is usually much less than 12 inches in diameter but a 12 cm diameter AVM would definitely be on the grand end of the scale.

The other thing I would say is that while my embolization was “easy”, the change in blood flow really took me aback for some time. I do think if your husband’s AVM is significant, it will take him time to feel better post op. I’ve worried about mine for at least a year post op but have been reassured all of the remaining feelings / noises I have are not to be concerned about.

I do wish you both the very best. I’m sure your husband’s operation will have different risks than mine but I would encourage you that I got through mine just fine (and as I say, I would do it again if ever needed. Honest).

Very best wishes

Richard

Thank you so much @DickD. My husband is experiencing minor pulsatile tinnitus only in his left ear (AVM is also in his left) and only when its really quiet (as in when he’s sleeping or sitting by himself in a quiet room).
You are right its 12 cm. My mistake. Its a grade 4-5 AVM. You raise a good point, I don’t know if the embolization will take care of his Pulsatile Tinnitus.
When the blood flow changed, did you experience any change in noise. Were there other symptoms as well?

My DAVF was in the Dura mater layer “over” my occipital lobe. As far as I can tell kind of half way along my right transverse sinus. I also had a clot or diminution of my right transverse sinus. The saggital sinus splits mid point on the back of your head into the transverse sinuses and then they become the sigmoid sinuses, going past your ears. So far as I can tell, there is also the straight sinus which flows to the join of the saggital sinus and TVS, so there’s a big “confluence” of flow at the back of your head.

My DAVF was, therefore flowing into my right transverse sinus, struggling to get past the diminution to the right and the sound of the excess flow was playing into both ears. Very quiet at first (Sep or Oct 2015) and only audible at night, on the pillow, a “whoosh” rather than a normal pulsar “thump” or “thump-thump”; noisier by Mar or Apr 2016 such that I was definitely suspicious that something must be awry. I managed to record the whoosh by pressing my mobile phone microphone to the back of my head in July '16 and saw an ENT consultant who identified an AVM at the end of August 2016. By this stage, I could feel veins being inflated every second on the back of the (outside of) my head. Strong enough to lift my fingers when pressed!

Through the autumn, I gained a dizziness (and I think due to the blood playing into the straight sinus, back towards my cerebellum) and the level of flow increased month by month. By January 2017 I was finding myself dizzy when lying flat in bed and resorted to sleeping more propped up on several pillows. I say “sleeping” in its broadest definition! :slight_smile:

I was able to get an embolization at the beginning of April 2017. After the embolization, as I say, the change in blood flow was so significant, I gained a loud (normal) pulse in my left ear. That has subsided and the dizziness has got better (noticeably post op, but otherwise has faded rather than stopped suddenly).

I didn’t quite feel everything was working towards “fully fixed” through Oct, Nov last year and went back for a check up which effectively took all year.

I do think a big change in flow is difficult to feel “ok” about but I did get better, very gradually, over 2018. I still have the left ear pulse, a bit of fullness in my left ear, some (normal) tinnitus; my head feels odd on top when moving – not dizzy but not what it used to be. But I can’t get the docs to worry about any of those and the conclusion of my scans is “nothing we can see” so I’m being a good patient and have stopped shouting “wolf!?”

My consultant interventional radiologist was very clear that he was looking to fix the flow from whatever artery into my transverse sinus (and thereby bring my stroke risk back to a normal range for a man of my age) and he couldn’t say / wouldn’t predict what consequences for the pulsatile tinnitus would be. He also tried to open the diminution and he glued up what feels to me like a decent size of exterior veins on the outside of my skull, maybe 2cm across and 3-4cm high area on the outside of my head was being inflated by the DAVF outside my head. I know the actual AVF appeared pretty small on MRI in autumn 2016 but I don’t know how extensive its effect was by the time of the operation.

I don’t think my neurosurgery doctors were expecting me to decline as I did, so I think it was at least a little unusual. I also believe my DAVF was probably acquired, rather than a normal in-brain AVM which I think is more often considered congenital. So that your husband’s AVM is changing a little may not mean he is on the same downward slope as I followed.

Hope this helps.

Richard