Occipital lobe AVM bleed and seizures

Hi All, I was diagnosed with a brain AVM in my left occipital lobe when I was 16 years old (it haemorrhaged and that’s how they discovered it). I had x2 lots of stereotactic radiosurgery over the years to treat it- I am now 33 years old.

Since the haemorrhage I have always gotten “visual disturbances” sporadically and when asked over the years what these are, various neurosurgeons have just told me they are benign symptoms of the brain damage from the haemorrhage given it was in the area that controls vision.

However, the last few years the flashing/visual disturbances have become more frequent lasting for weeks-months on and off but then they disappear again for a few months.. has anyone else experienced this?

I went to see a neurologist who has told me these are seizures and has sent me for an EEG. I am shocked because all the years I have asked my neurosurgeons what these visual disturbances are, they never mentioned seizures! I have been driving for 15 years and never had an accident etc, but if the EEG diagnoses me with seizures and epilepsy then I will likely have to inform the DVLA.

I just wondered if anyone else has experienced such visual disturbances (flashing lights almost like a kaleidoscope on one side of my visual field lasting for a few minutes but multiple times a day) and if so, have they been diagnosed as seizures?

Many thanks,

Kate

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Hi @Kate05

I had some visual disturbances after my embolization and the follow up angiogram when I had my operations several years ago. In my case, they were scintillating scotomas, which might also be the case for you, or they may be different.

A scotoma is a disturbance in the visual field (I think in both eyes simultaneously). In my case, the scotomas started as a blurry teardrop shape just right of centre of my vision. It grew to a large C shape with jagged teeth and then it grew further until it resolved (vanished). The “scintillating” means it was flashy but the shapes were also rather like frosted glass: all of the colour of the background was kept, but it was blurry: you couldn’t see anything through the shape.

Now, there are different types of scotoma and other types of similar visual disturbance. I read about scotomas in the book Migraine by Dr Oliver Sacks (he of Awakenings fame!) and in reading the book realised that that was what my visual disturbances were. Typically a scotoma appears and resolves in about twenty minutes. They are typically features of migraine aura – harbingers of migraine – and all of the aspects of migraine are described in the book, though it is not a new book, so there may be more modern findings since it was published.

The other things I’d say I learnt from the book are that the boundary between migraine (a common condition considered benign) and epilepsy/seizure looks really grey: there are many features that cross that boundary: at least it looks very grey to me, the professionals hopefully understand which is which much better than I do!

And Sacks also describes what he calls migraine-like symptoms: he describes true migraine as always transgressing the body from one side to the other. He is always suspicious of any apparent migraine that doesn’t transgress (cross from one side to the other) as provoked by some underlying cause, such as an AVM or tumour or some other anomaly.

Since we already know we have an anomaly going on, it may only be indicative of some interference from that.

My scintillating scotomas appeared to be induced by the contrast material in the operations. The effects faded away over a few weeks post op each time.

How similar do your visual disturbances seem to my description? “Silverfish” is another common visual disturbance in migraine aura.

I had to report to DVLA about my operation and I had voluntarily stopped driving for several months prior to the operation. My main issue pre and post op was dizziness but (other than seizures, which as you say DVLA take rather seriously) with that dizziness, the key question was if an episode of scotoma or dizziness came on, do I have sufficient warning of it / does it actually amount to a debilitating dizziness? Or could I safely pull to the side of the road and wait for it to pass? By the time I got to go through the formal paperwork from DVLA, I only had a bit of dizziness going on and we agreed it was not debilitating, so I got my permission to drive back the same day.

Hope something here helps,

Richard

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