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AVM Survivors Network

Scintillating scotomas a year post gamma knife

Hi all, just wanted some advice from anyone who has experienced any scintillating scotomas.

I had a really bad one yesterday at work. It came out from nowhere and lasted about half an hour and completely took over the right side of my eye. It was very scary as I couldn’t see anything. My colleagues were so supportive and amazing I don’t know what I would of done without them. The last time I experienced this was 3 years ago before my seizure. I managed to get in contact with my team yesterday and my consultant has prescribed me a short course of dexamethasone.

I currently have a left occipital AVM in my brain and my recent yearly MRA/MRI scan shows some swelling on AVM hence the starting of dexamethasone. Since having gamma knife surgery last year I have been experiencing more and more visual disturbances.

Any reassurances or advice would be greatly appreciated. Thanks. X

I’ve had Gamma Knife but never experienced a scintillating scotomas, but did have some swelling around the 6 month mark. I didn’t get to the point of needing a course of steroids but describe some of the feelings as “odd”. I can’t really come up with any other way to describe it. Swelling associated to the gamma knife is common to show up well after the fact, the dexamethasone should limit that. Sorry I can’t be more help. Take Care, John.

Hi John, thanks for your response.

I guess my brain is just going through changes everyday and some days are going to more challenging than others. I just started my course of dexamethasone and guess I need to allow time for the medication to work. Thanks for your time. Take care. X

Hi Chan,
I didn’t have gamma. I had a craniotomy, left frontal with no optical involvement. They put me on dexamethasone for about a week after my surgery for the brain swelling. During this time I also had my first scintillating scotoma. My (unqualified) guess is these are something to do with the brain swelling. After coming off the drug I had different types of scotomas for a week or two and then they stopped. I know they are scary, but I read somewhere that they only last on average about 20 mins. When I get one I lie down or put myself in a safe position and I remind myself that it will be gone in 20 mins. That helps me a lot (knowing it will be over soon). That’s my twisted logic.

Hi aliveandkicking, thank you for your helpful advice and insight. Scintillating scotomas are very scary and when I have one it takes me back to my first seizure. All the horrible memories came flooding back. However this time round I focused on my breathing as that was all I could control. I instantly felt my heart rate slowing down and I started to feel more relaxed.

You are very spot on in relation to how they last and the importance of reassurance that it wont last long. I will remember this next time I experience one.

Thank you for your time. X

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Chan,

I’ve had an embolization of a dural arteriovenous fistula in my right occipital lobe. After the embolization, I had scotomas for perhaps a month or two, and then they became more rare until eventually they went. I had a repeat angiogram about the two month mark and again they came for a while but faded even quicker.

Talking with one of the other members on here, we attached them to the contrast material. Have you had an angiogram recently? In case it might just be that.

I’ve never had then before, ever. And I’ve not had one since, so now 2 years clear.

Scotomas are perhaps worrying but I think benign, not something to worry about per se and I’ve read they typically clear in 20 minutes or so.

Hope this might help.

Best wishes,

Richard

Hi Dick, thanks for responding. I haven’t had an angiogram recently. I only had a MRI & MRA scan since it’s my one year anniversary. I have done some reading on scotomas and I know they generally clear after time. They are just so frightening! Thanks for your advice this is reassuring.

Kind regards. Chan.