One Year Post Surgery

Hi. My son is about a year post surgery from the removal of an AVM from his left occipital lobe. Following surgery he had lost his right field of vision but there have been improvements in that since. Twice now, he has had episodes where he sees rainbow artifacts in his vision and then his right field of vision goes black. Each time his vision has cleared up in about 40 minutes. The first time this happened his field of vision was much improved after the episode. After the episode last night his field of vision got better but didn’t have any improvements after. Has anyone else experienced this? His neurosurgeon has not been overly concerned so far because his EEGs have been normal and he doesn’t have headaches with these episodes. Thank for any information any of you can share.

Hey Jayhsee,
Welcome to Ben’s Friends.
Post craniotomy I have had no end of visual issues with many of the same symptoms you mention. One of the many specialists I saw explained to me that I may be having occipital or visual migraines. These can occur both with and without a headache. For me, when they occur without a headache it’s like my head feels ‘heavy’ (Sounds weird, I know), like it takes more strength to turn or move my head.

One neuro was convinced that this was due to muscle tension in my neck, shoulders and face. To treat this I was given multiple treatments of Botox, but this was not successful in treating my symptoms. The neuro became rather anti telling me ‘Well, MY treatments have worked for others… …it must just be YOU…’ Hmmm, not very helpful.

I have repeatedly had symptoms discredited, ‘The scans show everything is OK…’ but it’s not OK at all. Often our reporting of symptoms is taken as hearsay and they rely solely on scans/tests to determine a diagnosis, due to this I’ve had more pseudo diagnosis’ (guesses) than I can count on my fingers (and toes). “It could be ‘X’, or it could be ‘Y’…” but then using that theory it could be ‘A’ or ‘B’ or ‘C’ or…any other letter of the alphabet too. I’ve been trialled on all sorts of medications from heart meds to epilepsy meds to psych meds etc, none of which were my ‘key’ and many years later I still battle symptoms daily, without any great answers. I think the closest I came to an answer was from a ophthalmologist who told me directly ‘You’ve had brain surgery… …what did you expect?’, what I didn’t expect was THIS.

Merl from the Modsupport Team

@jayhsee

I’m with Merl in the optical migraines. The effects you describe sound like scotomas to me. I’ve read about scotomas and I had slightly different scotomas myself after each angiogram for a few weeks.

My scotomas were shiny blurry things that grew from a small teardrop shape into a wide, jagged C shape that kept all of the background colour but was like frosted glass: I couldn’t see through the affected area. The onset of them was over a few minutes which meant that if I was driving, I could find somewhere to stop safely while they resolved. As you say, they resolve over a short period: I think mine generally took about 20 minutes to go away.

Mine went away after several weeks post angiogram but lots of [“normal”] people have scotomas as part of a visual migraine or migraine aura. So long as there is nothing sinister showing on EEG, it may not be something to worry about, more to adapt to.

I assume your doc might describe them as a scotoma but it is the underlying driver that I expect is the real question.

Hope these thoughts help,

Richard

Hi Merl,
Thank you so much for the reply. Optical migraines hadn’t even occurred to me but that does sound like a strong possibility. My sons last eeg a couple months ago was normal so there hasn’t been a lot of concern from his doctors. Thank you again for the thoughtful reply.

Jim

Hi Richard,

Thank you for the quick reply. I’m feeling like optical migraines might be the culprit. My son has his one year post surgery angiogram and ct scan coming up but I’m guessing they’ll be normal. His eegs have been normal as well. I will definitely bring up the migraines possibility. I guess I should not be surprised by this as his brain is basically requiring itself after having his big AVM removed. Thanks again for the helpful reply.

Jim

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Hey Jim,

I was thinking about what you were saying regarding your son’s EEG and his symptoms. An issue with some of these scans, not only EEG, but any scan, is obtaining results in the middle of an attack or the middle of symptoms. One time I was given a heart monitor, I was having some oddball palpitations every now and again and the dr wanted to see what was going on. Returning to the Dr he downloaded the info and said ‘All looks fine. Nothing there’. Next thing I’m feeling my heartbeat all out of whack, so I said to the Dr ‘All fine? I’m having symptoms right now’. He jumped from his seat with his stethoscope and listened to my ticker, hooked me up to his machine and sure enough it was missing beats, giving 1/2 beats, jumping all over the show, but prior to that he was sure ‘All looks fine. Nothing there’. I’ve now been given medication and it’s under control now, well, somewhat, but had I not been symptomatic in his consulting room he would have sent me on my way.

There is another scan known as a fMRI or a Functional MRI. They take images of the brain whilst asking the patient to complete certain tasks. It can show which regions of the brain are being utilised in completing the function, but it may also be able to show which regions are not showing normal activity. It could show what is (or is not) happening within the occipital region.

From my experience, this is not unusual. My Dr took the approach that they operated, they fixed Only they didn’t fix at all. I had to speak up ‘Ahh, somethings not right’ even then they were convinced ‘ALL FIXED’. When I saw the neuro he spat it, there was an issue and it needed surgical intervention. So please if you son sees any changes, speak up, yell if you must. Some Dr’s make out they know all about it, they don’t. No one knows his symptoms other than him. I’ve reported symptoms and had medicos look at me like I’m taking some sort of hallucinogen and saying things like ‘Well, that can’t be happening…’ but it was. I get these headaches. And, well headaches? everybody gets headaches. Right? These aren’t just headaches, these are explosions of agony sent from the gates of hell. Just WOW intense. But trying to explain it, the word ‘headache’ just doesn’t cut it.

Something that can be helpful is to keep some sort of diary of time of symptoms, type of symptoms, treatments, medications, diet, activity, environmental weather, etc, etc. This can help identify common triggers or patterns. Some headache types have what is called prodromes and postdrome, the signs before symptoms kick in and after they have past (Some people often call it a ‘Migraine hangover’). List it all, the more information the better.

Hope it helps
Merl from the Modsupport Team

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