I’m missing some peripheral vision in my upper right field of vision since my second bleed. I’m waiting to see if it corrects itself. I had double-vision from both bleeds that healed within a year each time.
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You raised a very interesting topic which I believe is not researched yet, indeed my daughters vision issues was hallucinations, she claimed she sees dots and lines, etc. in her eyes, but the doctors tried to claim that it’s unrelated to the AVM, since her AVM is located at the right occipital lobe and she claimed the hallucinations sometimes only in the right and sometimes in both eys and a right occipital AVM should effect only the left eye and not the right.
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Can you prove for sure that the peripheral vision is from the bleed, as they claim that any of the procedures (Embolization, Reg surgery or Gamma Knife) can also cause peripheral vision! I would assume that both can cause it.
I agree. I assume it is a risk of either a bleed or of an operation: it is simply damage, from whatever source.
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I wonder if these things might sometimes be more akin to migraine aura when they appear in both eyes. Very temporarily I had scintillating scotomas which appeared for me, which I’ve ascribed to the irritation of the contrast material after two of my operations. It faded to nothing as the contrast material was flushed through over a few weeks but I got synchronised shapes in both eyes for periods of about 20 minutes for a few weeks post op.
In the case of my scotomas, they appeared initially as a teardrop, just right of the centre of my vision, then grew into a C shape, complete with jagged teeth within the C, growing to fill my vision before subsiding. The space within the shape was blurred, like looking through a frosted window but the edges may have been brightly coloured (hence “scintillating”). Having found a description of scotomas in the book Migraine by Dr Oliver Sacks, I know also that other unusual deformations of vision can arise as migraine “aura” and that similar things can be associated with seizure or with other “migraine-like” provocation, arising from some anomaly (which might include an AVM or tumour or perhaps scarring).
Maybe mention scotomas or other visual paraesthesia to the doctor to see if that fits any of it any better.
you it came with migraines and they call it occipital migraines. But it’s most probably related to the AVM, and then, the doctors don’t care about source of the cause, since they claim that the treatment is anyway the same, so why put in any effort do even do research, there is also no money from the research outcome, so there is no interest in performing any research on this topic.
See also that visual paraesthesia can affect one or both eyes…
Thank you.
Just read the beginning of the article you just posted and we have the answer to our question that there is no clear and cut answer as to the source of the cause:
By: Deborah I. Friedman, MD, MPH
About 25-30% of migraine sufferers have visual aura symptoms. It is often difficult to determine whether or not visual symptoms are related to migraine, or if they are a symptom of a more worrisome problem.
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I think the simple matter that we already have something unusual going on in our heads – whether the AVM itself or any residue from a bleed or effects from an operation – there’s a bunch of reasons to have “migraine-like” symptoms in Dr Sacks’ words.
Yup and this article is also a very very informative article and thank you for posting it. Seems that it’s definitely AVM related, maybe the AVM is amplifying the migraine maybe it’s the sole source of the cause, but most lightly related in one way or another.
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I guess the point is, if related, then there’s no further cause for concern. If unrelated, what is provoking it?
In Sacks’ book Migraine he said that migraine itself almost always transgresses from one hemisphere to the other. He always reserved suspicion for any apparent migraine that doesn’t migrate like that: that there is likely some underlying thing provoking the migraine-like aura. However, since we know we’ve already got a thing, we can suspect that.
It’s always possible to have more than one medical thing going on but it seems unlikely.
Hello all. And to piggyback off @DickD’s comment, yeah I’m pretty much all gone with peripheral, all gone at night, and all gone at dusk, midmorning, and rain. But man you better watch out around noonish on sunny days…
. In all seriousness though, I’m middle aged. I’m married to my beautiful wife of 21 years. I’m a father twice over to some beautiful, intelligent, articulate, loving offspring. I’m a homeowner which I realize is a privilege not a right. I’m even known to fire up the grill from time to time, charcoal of course, but I had to kinda ween off that after the tick bite. The point? You win some, you lose some, but you always have the choice of getting better or getting bitter! I’ve been in some pretty dark places but I choose, sometimes multiple times a day, to stay in the Light! Blessings as you continue, grace & peace as you continue!
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For some it maybe the sun and for some it’s the cold! to sum up the topic, I guess migraines can vary alot on the environment and on changes in the body makeup.
This is helpful! Thank you for sharing. We need a positive outlook at times of difficulty 
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Hello Analiza, it’s 3am where I am and I’m drained and awake with worry. You are not alone in feeling so stressed and bruised and beaten. My 15yo daughter had a stroke 3 months ago from a ruptured AVM. She’s had a second embolisation last week on a new aneurysm ( on the previously embolised MAV) that grew in 3 months. She has further AVM they don’t want to touch because of the proximity to the brain. This journey is cruel as a parent. Sending good vibes to you.
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The ARUBA trial showed superior medical treatment only compared to avm intervention in unruptured AVM. my daughter has minimal sleep - we are constantly doing Trial and error 
Hi.
We’ve touched upon ARUBA elsewhere today.
My reading of ARUBA and a rebuttal of its findings was that it was sufficiently rebutted by other doctors that basically it doesn’t help us to decide whether to treat or not treat.
The one thing doctors do seem agreed upon is that once a bleed has occurred, the question of whether to act goes away.
As I’ve said in another thread today, it would be great if there was a reliable double-blind study that shows us some circumstances when choice A was best v choice B. From my reading of ARUBA and the rebuttal referenced above, I don’t believe there is a study that really helps us to decide.
However, outside of such studies, our doctors have their own experience and one assumes a longer and longer history of choosing mode A v B v C v “conservative management” and do give us advice based on their skillset, their research and their own outcomes, so if your doctor advises conservative management, then that is based on such factors. Often it is a difficult thing to choose “no action” but it seems to me foolhardy to go against a doctor’s advice and experience.
What do you know about your daughter’s AVM and the recommended route(s) forwards? Have you looked into a second opinion?
Lots of love, and sorry for being slow to write back,
Richard
There are multiple variables to consider in the applicability of research to one’s situation such pediatric vs adult. Location of avm. Ruptured bs unruptured. Symptomatic vs asymptomatic etc etc. in any decision one must be very very careful such as with avm bec it’s not simply treating a gout. It’s a balance between life and death. I have my daughter being managed at Stanford and the second opinion is at ucsf. Cyberknife was invented at Stanford. Our situation still awaiting all the tests and further testings.
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I completely agree 
Richard
This is the nature of the beast I’m having to learn to live with. My daughter went in for intended embolisation of an untreated avm and came with an embolised aneurysm on a previously treated avm. She had an mri 3 weeks prior. How fast does this grow?! I have so many questions for her doctor but I’m starting to think he won’t have all the answers.