Brain not "showing me" my peripheral vision

Well, made it all the way to the appointment stage, which apparently is the end..
Referrals, months worth of medical records and tests submitted, a couple update emails I wrote explaining everything, ect. Nobody else can figure out why my peripheral vision is out of focus and deteriorating, so they were kind of the last hope.
Called today to get an update, hopeful for an appointment, and the ophthalmology department said "yes, he looked at all your work and read everything, and there is nothing we can do". .....??
Soooo, that's it?
I guess to be fair, all the ophthalmologists that I have seen have submitted a ton of tests and thoughts, so we have covered a lot of ground and possibilities.
I just had the assumption that, whatever all these specialists came up with, Mayo had even more. Or maybe a team of doctors that discussed the situation and tried to come up with ideas, instead of one dude flipping through the paperwork and saying it's hopeless and turning me down.
On the other hand, I'm thankful they are honest apparently, instead of inviting me up there to get money.
Anyway, the reason for this post, was to get some opinions on this. Should I try to push it a bit more and see if they will try to look deeper into it? Or if they say there is nothing they can do, is that usually just the end of the road with them?

How frustrating, but I guess it just shows that even Mayo doesn't have answer to every issue. If it were me, I would ask them who they feel is the preeminent eye specialist I could possibly contact based on what they have seen in your tests.

Here are some other major medical centers known for eye care: Massachusetts Eye & Ear Infirmary, Cleveland Clinic, University of Iowa Hospitals and Clinics, Johns Hopkins...

There are two other possibilities -
Go to this group on Connect https://connect.mayoclinic.org/group/eye-conditions/ and post a new discussion. Give it a title that is descriptive of the problem you have. Describe your symptoms and maybe share a little info about what has been ruled out as well. I'm guessing you will be able to find someone with a similar or related issue.

The other suggestion, if you haven't already tried - there is a group called the Phillips Eye Institute in Minneapolis. Many people I know have consulted them for highly complex eye issues. https://account.allinahealth.org/carenow/options

Have you asked your local docs for recommendations?
Sue

Thank you for the link and other places you suggested. I will contact them and see if they have any ideas 👍.
My local doctors are stumped and all claim they don't know anybody that knows more than they do. Lol

@88lance I understand your dilemma of not finding answers to your vision condition. Ironically, I used to work for a researcher who studied vision processing abnormalities in the brain that was related to defects due to albinism. It makes sense that this is a brain processing phenomenon because you can see and the timing is off. I found another similar discussion, and then I found some research literature in the journal, Frontiers in Human Neuroscience published in 2013. This sounds like what you are describing. Here is the link:

-A world unglued: simultanagnosia as a spatial restriction of attention
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3627977/
There are several co-authors around the world, but one of them is at the Department of Psychological and Brain Sciences, Dartmouth College in New Hampshire. If you click the link for the authors, you can find contact information. I hope that could lead you to researchers who may be studying this. It seems like this may not be widely known in medical practice.

Here is the other similar discussion that may be interesting to read:

-Rather worrying memory/processing symptoms at 23 years of age
https://connect.mayoclinic.org/discussion/rather-worrying-memoryprocessing-symptoms-at-23-years-of-age/
I am also an artist, and I was wondering if you would be able to train yourself to have a more complete field of vision. One of the exercises that I did in art school in life drawing class was a 3 minute pose with a live model on the stand. That forces you to look at details and compare while getting a loose sketch, and you have to keep looking back and forth between the model and your drawing very quickly to compare to see how accurate the drawing is. This isn't an easy task, but it gets easier as your eye gets more accurate in judging your drawing. Perhaps rapid eye movements will force your brain to recognize the bigger picture. I think it may be an interesting experiment to see if taking a drawing class may help.

You can also get a sketch book and sketch, but you won't have the time limit forcing you to look quickly, so I think a class would be better. Don't worry about trying to make masterpieces. Most people in classes are not professional artists, and your purpose is simply to try to improve your vision. If this helps, then you have something to report to the researchers who study this. You don't need expensive supplies. I did this in art school with a newsprint pad and grease pencil. We were trained to hold our pencil out at arms length and make large strokes. You can also use a ball point pen or regular pencil and office paper.

Sometimes it just takes time to figure out health problems, maybe years until there is another clue, and doing your own drawing experiment might speed up the processing time for your vision. I would be very excited if that works! The other thing that may help is to ask one of your doctors what supplements can help vision. The retina does a lot of maintenance to keep the rods and cones working. This is kind of like the processor chip in a digital camera that gathers the image. Protecting your eyes from UV light with blue blocking sunglasses is probably a good idea because the UV light can contribute to cataracts. Turning down the intensity of a computer screen may help too because of the blue light from the screen and eyes fatigue.

What are your thoughts? Are you ready to start drawing?

@88lance This was the other link I was looking for about the retina repairing itself in the journal, Scientific Reports.

-Spontaneous Regeneration of Human Photoreceptor Outer Segments
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4515765/
Do you find this to be interesting?

Wow, thank you for all the information, I will start diving into it. It is such a strange situation, it would be great to see that there are some studies over it or over something similar. The drawing idea may be something to try, since quick eye movement would hopefully make my brain realize that it needs to start showing me the whole field of view. I will dive in and update on how it compares to what they are studying. Thanks again for the big reply and all the info!

@88lance You're welcome. I was thinking about this and comparing my vision and what I do as an artist. I have a lot of spacial awareness and 3 dimensional understanding of the world and I think in 3 dimensions. I'm always translating that into 2 dimensions when I create artwork. You are a bit opposite because the periphery and spacial understanding cuts in and out for you. I hope exercising that with a bit of art therapy will help. If you enjoy art, you may want to go look at some great art in museums. There is a lot to be learned when you study how the artist did something and it may inspire you.

You may also have a dominant eye. I know I do, and my brains gives it preference in processing the image. At one time when I had contact lenses, one eye was corrected for distance and the other for close up, and when my focus changed, my brain automatically switched eyes. If you cover up one eye and try some rapid eye movements, you can find out if your eyes are different in the way your brain processes.

I really like this "Art for Healing" discussion on Connect? You might enjoy it. (You may find out something about me on the first page, and I have contributed fairly often there.)

-Art for Healing
https://connect.mayoclinic.org/discussion/art-for-healing
Will you update me with your progress on your drawings? Good luck in your quest!

The article about only recognizing one object at a time is very interesting, and seems to be similar, just on an extreme level.
It mentions that the person did not even realize another person was on a TV screen, but when I see a video on a screen I don't have that issue. It mentions that a person also cannot see two shapes on one page at times, but I haven't noticed this as an issue either.
However, it does seem similar in the sense that the persons brain does not seem to be giving them all of the information that should be available. Maybe my situation is the same, except in a minor form.
It seems that some of the people that were tested would not be able to drive, as their brain would not even acknowledge a car next to them right before a lane switch, but mine will every time (so far 😬 lol)
I didn't mention that I am mostly blind in my left eye since birth, I only have some peripheral out the left side. This has never been an issue however, because as my left eye peripheral scans to the right, my vision disappears at the exact spot that my right eye picks up the spot across the bridge of my nose, giving me a full field of view with no missing spots.
I will check out your new link and read up on it as well, and maybe trying the drawings will train my vision a bit.
I may send the link about the studies to my neuro-Opthalmologist and see if he will read it, he may be interested in testing some of the ideas they used.
Thanks again for all of the information, it is great to finally find something that sounds similar to this wierd situation

I think I forgot to tag you in my last response, sorry. (You may want to read it first) I wanted to mention an idea that my neuro-Opthalmologist had that we are trying at the moment, as it seems like an interesting idea. So far I've not seen any effect though or improvement.
We switched to prism glasses, with the prisms focus all the way around my peripheral.
As you probably know, prism lenses are usually used for people that have a spot missing out of their vision from brain damage or a stroke, and the extra light directed in from the prisms at that spot forces the brain to pay attention to the missing spot, and from what I've read it seems that it usually works very well in making the brain start acknowledging the missing spot again.
I've had the glasses for 2 days now, and so far have not seen any improvement.
We did do a test with the glasses, measuring my balance on a very sensitive board that somewhat resembled a scale. Although I could not tell any difference in my balance with the prism glasses compared to without, the board measured even the slightest movement in my feet and determined that my balance is actually better with the prisms than it is without them.
Since the brain uses vision and the view of things around you to balance your body better, he determined that from the test the prism lenses were in fact giving my brain more information than my normal glasses. Basically the prism lenses were letting my brain get more information from my peripheral, and put that to work to improve balance.
The remaining question was whether my brain would use this additional information to give me my peripheral back or not, which so far has not, but still is a pretty interesting theory and test .
Anyway, just wanted to add that, since it seems to be an interesting test and experiment.

What op is describing seems very odd. The reply does trigger some ideas related to amblyopia? What do you think?