25 year post vein of Galen AVF (VGM)

Hi;

It’s been a long time since I have written. My AVF was diagnosed and treated with 2 days of interventional radiation using platinum coils, wires, and flakes followed by a craniotomy. I am currently very afraid. I am having serious variable tennitis in both ears and maybe some psychosis. I am scared that there might be a brain tumor since the amount of radiation that they had to use was enough to give me an awful radiation burn, and that an MRI is out of the question. Anyone have similar experience?

Hi

I believe that radiation damage occurs from “ionising” radiation but an MRI does not use ionising radiation and there is no evidence of any carcinogenic effects from an MRI so if you’re worried about your health, go and talk to your doctor about it and i believe an MRI could be used without exposing you to further carcinogenic radiation.

Go and get checked out but make sure they know you’ve had some radiation burns previously.

Best wishes,

Richard

Hi Richard;

My question was not about radiation. It was about my symptoms and diagnosis. I was told that I cannot have an MRI because of the type of clips that were used on the vein of Galen, so trying to make a diagnosis is a problem. Have you heard of tinnitus or psychosis being related to a vein of Galen AVF?

Thanks, Joyce

Oh, I see. I understand that it is the clips that are making the MRI unsuitable. As you see, I thought it was a concern regarding too much radiation.

I have just looked up to see where the vein of Galen is and to be honest, it is very similar to mine. The VoG connects into the straight sinus and this all converges into the transverse sinuses. My DAVF was discharging into my right transverse sinus and I could hear a clear pulsatile tinnitus… in both ears because the transverse sinus runs horizontally to behind both ears and then becomes the sigmoid sinus as it curls round the back of the ear and into the neck.

So I would definitely say that a pulsatile tinnitus could be heard from an AVM discharging into your VoG or for that matter into the straight or transverse sinuses.

A pulsatile tinnitus can sometimes be heard using as simple a tool as a stethoscope, so your primary may be able to corroborate the presence of a “bruit”, the noise of an AVM, the pulsatile sound.

Reading about vein of Galen malformations is “interesting” and some seem very serious and are undoubtedly congenital. Do you know if your AVM is known as a vein of Galen malformation or is an AVM between a specific artery and the VoG? An actual vein of Galen malformation sounds quite large and (untreated) can be seen on doppler or ultrasound. So maybe there are other ways for the docs to have a look at it. Maybe surgery or an embolization would require radiation but to be able to see if you’ve got a recurring problem might be possible without radiation.

Re the psychosis I would guess that some point in the brain being under pressured or over pressured could lead to a psychosis but I’ve no idea which part that would be.

Hope this all helps,

Richard

Thanks for getting back to me. Yes, info was very helpful. I understand that my AVM involved the sinuses and many arteries and veins. They called it both a AVM and a AVF.

So, sounds like we did have simalar diagnosis.

I have an appointment on Wednesday with my primary at UCSF, so hopefully can get appropriate referrals.

Thanks Richard, will keep you informed.

Joyce