Brain not "showing me" my peripheral vision

@88lance For me TOS causes arm pain, muscle spasms in my arms and hands, cold hands that turn bluish or purple from decreased circulation, neck spasms, muscular headaches on the back of my head, and some loss of coordination in my hands if it is bad. I get blotchy skin that my PT calls a vasomotor response. I don't get visual disturbances, but I also had a spine problem that was operated on for a collapsed C5/C6 disc that was compressing my spinal cord. With one side of my neck being tighter from TOS, it causes rotation of cervical vertebrae during a spasm. When C1 & C2 were independently rotated, that caused vertigo that came on when I looked upward at birds flying overhead. Essentially I was kinking an artery that was sending blood to my brain that was already stretched because of the rotated vertebrae. The vertebral artery runs through the sides of the cervical vertebrae. Getting my vertebrae correctly aligned with my physical therapist resolved the vertigo, and since my spine surgery, my neck is more stable and vertigo hasn't been an issue. I still can get rotated vertebrae which causes headaches, but I'm aware of when this starts to happen and can take corrective action. I do still get tight muscles through my neck and chest, and the incision scar from the spine surgery on the front of my neck makes it tighten up, so I frequently stretch that out. My PT does myofascial release therapy to keep the tissues and muscles looser. MFR has helped make my symptoms from TOS better.

I was a Mayo patient for spine surgery, and the vascular lab there also assessed my TOS and did Doppler studies with tiny blood pressure cuffs on my fingers while moving my arm and neck position. Some of this is posture related, and any forward slouching, and even worse... slouching with a forward head position makes the TOS worse. If I maintain good posture, I feel much better. It helps me a lot to maintain good core strength. I have a horse and do a lot of physical work in horse care and feeding, as well as trail riding which I do with good posture. That works my back and makes it stronger which supports my neck and spine and I have less neck pain.

You may also be interested in following Kjetil Larsen on facebook. He may also have posts listed as MSK Neurology. He posts unusual case studies kind of similar to your symptoms but with variations since no 2 patients are the same, and most of these patients have seen specialists who have missed the problem. Most often it's a problem of compression causing altered nerve conduction or circulation, and frequently it is linked to TOS. He is the author of the link and website that I included in my last post. He may answer you if you comment on his posts.

Specialists for TOS are hard to find, but a big teaching medical center that lists TOS as a condition that they treat should have some doctors who can diagnose and treat it.

Do you have a medical center that treats TOS near you? If not, would you be able to travel to see a specialist? The treatment can be just physical therapy and not surgery, as surgery creates scar tissue and can make TOS worse. Go to the best place you can find. That may be another angle to possibly be seen at Mayo if you wanted to apply again. Sometimes that works if you can find a problem that is within the expertise of a specific specialist. Once you are accepted and seen as a patient, that could lead to referrals to other departments based on what they find. One test for TOS is that the doctor listens to your pulse in your neck and when you turn your head or raise your arm, that pulse diminishes until it disappears. If that happens to you, you could apply to Mayo again for TOS for testing of circulation related to head, neck, and arm position. You may want to discuss this with a neurologist. Read everything and write down specific target questions that will get your doctors thinking along those lines like asking about subclavian steal syndrome and you're wondering if that could be part of your issues??? This makes sense to me because patients with TOS can easily pass out, and when that happens, vision does start to black out. You may be describing being on the edge of diminished circulation similar to someone who is fainting. I have seen this a lot because I used to fear doctors and pass out if something was going to hurt. My emotional response to fear was my body flipping a switch and causing blood vessels to dilate as a protective mechanism when blood pressure from stress was getting too high. If you are describing your experience like that, they may connect it to circulation fluctuations, but only do that if that is true for you in your experience of the symptoms.

In talking to your doctors, make sure it is always a question because your doctor has to diagnose this and you can't tell him what to do, but say you suspect it make be something like (fill in the blank) because you have symptoms that seem to match up, and how would he go about testing you to figure that out?

Wow, great information, thank you for writing that out.
I will check out Larsen and make a post to him as well.
A lot of things sound different than my situation, but it actually all sounds like it could be from the same problem, just having different affects.
I don't have a TOS specialist in my town but I'm sure Dallas (3 hours drive) has someone for that. I will do some searching and see who I can find.
I don't notice posture making a difference in my vision or fatigue, but I know I have poor posture. I may try to practice better posture throughout the day and see if a difference starts to show itself.
My next appointment with my neuro-Opthalmologist is the 11th, I will try to bring some of this up to him, although he seems to kind of just dismiss anything blood flow/pressure related. I may start talking to some other specialists for now that are willing to actually look into it, because it seems to be a decent possibility that this could be where the problem is.
I did meet a therapist once that felt of my neck and face, and mentioned that I should see a TMJ specialist because it felt wierd. I called a specialist, and after some questions she asked, she said it was not the issue.
But a second opinion and finding someone that specializes in TOS would be good to find.

@88lance Here's another angle for you. The therapists who would be good at working on TOS or issues of restricted tissue that could be anywhere in the body are the ones who do myofascial release. This is specific stretching therapy created by John Barns, and he trains and certifies therapists in his MFR techniques. I have done this therapy a lot. The highly trained ones have Expert Level certifications in the John Barns methods, and my PT is an expert level. I have learned so much from her. PT's will know doctors who specialize in physical problems because they refer patients to them, so if you call a PT and inquire, they may be able to give you a name of a doctor who specializes in TOS, and you'll also have made contact with someone who could likely help treat you.

Here is the list of MFR therapists for Texas. I did a search on the mfrtherapists.com website.
https://www.mfrtherapists.com/app/list.asp?state=TX&country=US
You can also go to the John Barn's clinic (Therapy on the Rocks) for an intensive treatment over several days in Arizona or Pennsylvania. If you are not finding an MFR therapist near you, then call Therapy on the Rocks and you can ask for names of therapists who trained there who may not be listed on the website search page. You can do this therapy even if you don't have a specific diagnosis, but a list of symptoms instead. You just need a doctor willing to let you try it.
https://therapyontherocks.net/
This is our MFR discussion from the Neuropathy group where you can learn more. The first pages have a lot of links to information, and there are patients also participating in the discussion.

-Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Would you keep me updated on what you find and your progress? I would appreciate knowing if you find an answer, and what a TOS vascular specialist might say about this.

Thank you for the reply and information again. I will contact some of the ones you recommended and see what they have to say. Some are only a few hour drive, so that's no problem 👍. I would be interested in seeing what they do and what affects it has.
I am also supposed to see a doctor about blood flow in the head and neck, so I will see what they say as well. I will report back what I find 👍

Everyone is stumped, wanted to post and see if anyone has experienced anything like this before.
M, 33, 6'3, 155 lbs, no other health issues.

November 2021 start noticing my focal point in my vision seems to have shrunk.
Over time this continues to worsen.
I go to eye doctor and he says there is nothing wrong, change glasses. I change glasses, no affect.
Fast forward to today (August 2022), peripheral has worsened to the point that I do not even see my peripheral anymore unless I try to focus on it. There are no black spots, no missing spots, no "shady" areas, my full field of view is there, IF I focus on it and try to see it. Otherwise it is like looking through a gift wrapping tube.
It's hard to describe because it is so weird.
The best description is as if you were daydreaming, staring off into space. You are still seeing, but you are not really "seeing" until you think about it, or something gets your attention. Then you realize you were staring. This is what my peripheral is like all the time. I have to purposely focus on it to see it. Or something shows up in my peripheral that makes me notice it. Otherwise it seems like my brain is just not showing it to me.

My brain still notices the peripheral, and I can tell because if I am approached on the side, or a car beside me approaches in traffic, I suddenly notice it. My brain is basically seeing my full field of view, but I don't notice it unless I focus on it. As if it's not showing it to me.
It does fluctuate and gets better and worse over the coarse of days, sometimes in the span of a single hour.
We have tried several eyeglass prescriptions, and several contact lens prescriptions.
An interesting observation, when I switch glasses/contacts, the fluctuations change for a few days. It may stay better or stay worse for a few more days. But other than that it continues to fluctuate, meaning that it does affect it somehow, but never fixes it.

So far, I have seen 9 ophthalmologists, 3 optometrists, 1 retinal surgeon, 2 endocrinologists, and one neuro-Opthalmologist. I have had stacks of papers of blood work, an MRI with and without contrast, several OCT scans of the eye, optic nerve, and all the stuff inside there, several prescriptions of glasses and contacts, and a thyroid ultrasound. Brain MRA and neck artery ultrasound coming Tuesday.
So far, "We don't see anything wrong with you."
Mayo clinic was a big hope for me, since they have a team that is good at tracking down strange things.
Ophthalmology at Mayo called awhile back, "we reviewed your stacks of paperwork, we don't know either, there's nothing we can do for you."

I'm worried that this is eventually going to happen to the focal point of my vision as well if it is not figured out. Since there is nothing wrong with my eyes or optic nerves themselves, brain or blood works or thyroid, I'm starting to lean towards autoimmune.

I asked several other specialists (neurologist, Ophthalmologist, PCP, ect) if they think this could be a possibility. Interestingly all of them said no.
"If you had an autoimmune problem, it would have shown up in the MRI, and if not in the MRI, it would have raised a flag somewhere in that massive stack of blood work papers there. No signs of it, you don't have an autoimmune issue."
I asked for a spinal tap just because it sounded like it might give clues, but all of them refused that also.
The 2 things that make me lean towards this still being a possibility are:
1: I dont know what other options there even are left to test,
2: My neighbor has MS and was told by several specialists that it was not MS over the course of months, until Mayo took one look at her and said "well your issue is that you have MS". Everyone else turned out being wrong.
Apparently it is a hard thing to diagnose.

So, from those of you that have experience with autoimmune issues, what are your thoughts? It would be great to hear from some people that actually deal with the strange things that autoimmune can do, and have some insight on what tests they did to figure out the issue.
Looking forward to hearing your advice and input on this.

@88lance I wanted to check in with you on your journey to find an answer to your vision issues. Is there any new information you would like to share or has there been any improvement?

No improvement, things just continue to decline.
I have a MRA scan to check blood flow in my head tomorrow, as well as ultrasound on my neck to check arteries there.

Other than that, even my neuro-Opthalmologist told me he's stumped and doesn't know what else to do.

I asked for a spinal tap, because some of the symptoms add up for something like MS. He told me no.
Asked a few different doctors, all of them refused.
I'm really irritated and, honestly, angry about this at this point, because we have tested so much, except spinal tap. What if it is MS. They are just not going to let me test because "I don't think it is, probably not anyway".

Yea, what if it is, we going to screw around for 6 months until it gets worse and I come back blind?

I see absolutely no reason for refusing to test something that big when there are symptoms for it.

Working on trying to get a referral, if I can't, I'll probably fly back to Mexico and get one done, I have a Neurologist there that doesn't mess around.
Don't really know what else to do at this point. 😔

@88lance I'm checking in to see how you are doing. I know you have not had answers and that is tough to be that patient. Is there anything that brings you peace and joy? Perhaps listening to soothing music?

Hello, I haven't logged in for awhile. A lot has happened, but with no positive results.
I did get the MRA blood flow scan, which came back "very good", along with Corotid artery scan, which was the same. Afterwards I flew to Mexico for a Lumbar Puncture. They piled on a list of tests to search for any inflammation signs, autoimmune signs, and infection signs.
They also ordered more blood work, which came back clear.

The Spinal tap results came in showing no signs of MS, or myelin sheath in the sample, so they have pretty much written off MS.

One thing that finally did come back wrong, was my Interleukin-6 (IL-6) in the spinal fluid. It is two times the level it is supposed to be. The IL-6 I was told is "a broad indicator that something is either infected or inflamed". But when all the other tests from the lumbar puncture came back clear, they wrote it off as "something that the body just releases for no reason sometimes".

I went to another Neurologist and he seemed interested in the IL-6 being high, and ordered blood work that could track down areas that would find why someone's IL-6 was off. All blood work is, of course again, normal.

In the start of November, I caught covid. The symptoms were typical and went away after a couple weeks, but I noticed that my main problem (vision and fatigue) had taken a serious drop again. I have noticed that, while my problem has continued to deteriorate steadily through the year, each time I get sick it caused a nosedive. When I caught food poisoning in Mexico in January it did the same thing, took a sharp dive, and never recovered. Now Covid has done the same thing.

At this point I can't really drive anymore, as my peripheral is pretty much gone unless I really try to focus on seeing it. My focal point is like a pin dot. The fatigue varies. Some days I feel like going out for half the day and doing something around my property. Some days I sleep or lay around all day because I am either tired or my vision is to irritating to try to focus on anything. At this point I feel like I am just rotting away until I finally die someday.

I did get my Neuro-Ophthalmologist to send a referral to a very highly recommended Neuro-Ophthalmologist at UT-Southwest. This guy has studied Neuro-Ophthalmology for decades, has done studies and research at Mayo clinic, and does some kind of work with University lectures about neurology stuff. He also still runs his practice with Neuro-Ophthalmology.

I am hoping he will have some new ideas. They said they will review the referrals and decide whether to accept or reject it. So at the moment it is just more waiting, and hoping they will consider it.

@88lance It is hard to have a problem that doctors don't understand. I'm sorry you are going through all of this. I think about how my life would change if I lost my vision because I am an artist. Probably, I would listen to music because it inspires me and makes me feel good.

I hope the next specialist will be able to help. I will keep my fingers crossed for you. Thanks for letting me know.