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I've always wanted to write this

So, this head doctor, an insurance guy and TJ walk into a bar…

(I’ll let you figure out the rest of that one!)

Seriously, had an appt with the neuro ophthalmologist today. Waited 4 months for this appt.

It was the same song but a different verse. I have to say I was very impressed with his patience, his thoughtfulness, his questions and his willingness to take time sorting things out and answering my questions.

I wasn’t impressed with his answers. Let me explain:

  • He said that all of the important components - optic nerve, retina, cornea, all look relatively good and if they were the cause of my blurry vision, my blurry vision would always be blurry. It’s not, it’s only blurry sometimes.
  • We talked for a long time about my headaches and my vision and which one causes the other or does one even cause the other or do they just happen at the same time?

The good news is, it’s not something catastrophic and irreversible and I am not going to go blind tomorrow - at least not from that.

The not so good news is that there probably isn’t really a way to tell if the headaches cause the vision problems or the vision causes the headaches or if they are some grand right-wing conspiracy (insert your conspiracy video of choice) that is causing them both.

And since there really isn’t a way to tell which came first, we can’t really fix it either. Don’t know if it was the chicken or the egg, but it’s hard to cook and eat them both.

So, now what? Well, a couple of things:

  1. We have an appt in November to take a look at the optic nerve, the visual field and some other things - things that aren’t quite worthy of a top grade but they aren’t problems that need to be dealt with - just to make sure they continue that way.
  2. I need to start doing some personal research and tracking when the headaches happen, when the blurry vision happens and whether there is a link between them and whether I can alter what I’m doing or what I’m doing it with to make a difference. Like for instance, I have a 17 inch laptop at home - that sits on my desk where it is pretty much face height when I am sitting at my desk. Do i need to get something smaller and a different desk so I’m looking down at it? Do I need to swap out the ipad for a Chromebook or Windows 2 in 1 which can flip over and act like an ipad but it has a bigger screen so the visuals work better? Do I need to I don’t know, what do i need to do?

So the Head Doc, Insurance Guy and TJ walked into the bar…

I don’t know how to resolve that question yet…

TJ
P.S. Given some of the meds I’m on, it really wouldn’t be a good thing for me to enjoy much if any of what they offer at the bar - Though the idea of “Head Case Beer” does have a ring to it. :wink:

a fair amount of my brain damage is in my occipital lobe around my optic nerve; many of my migrains with aura start after I spend too much time in front of a a screen and will usually trigger when I scroll the screen.
I guess looking at the screen too long along with the scrolling motion triggers my occipital seizures. you might monitor your screen time in relation to your headaches and vision issues. just another thing to consider.

Mike,

When I’ve asked my doctors what part of my brain is damaged they usually give me some sort of “brush off” like it’s too intertwined to be able to tell. When I read stuff from reputable sources about what each of the 13 cranial nerves do, it’s not a pretty picture. I end up with anywhere between 7 and 10 of the 13 are potentially one of the causes of my symptoms. Yeah, that’s a contest I really didn’t want to win.

I have wrestled with my screens ever since I got home from the hospital last year. Prior to this all, I had a desk where I could have my laptop, two external monitors, my ipad and my phone. I guess you could call that a screen junkie’s heaven. Even before I turned any of them on, I got rid of one of the external monitors, put the other one down in the basement and got a different desk. I knew things weren’t going to be the same so I didn’t want the physical reminders of it. I am now starting to wonder if having two or three relatively static screens would be better than having one - where I need to flip from this to that to e-mail to FB to my calendar to my todo list etc. I wonder if having to switch screens on one computer is actually harder on my eyes and my head than having two or three more static screens. Hmmm…

TJ…it sounds like you have a lot more going on up there than me… I have one good dead spot along my parietal/occipital lobes that causes me issues but thankfully my headaches are controllable…like you said…probably not a contest you wanted to win. hang in there!

TJ I’m sure this is too simplistic to be the case for you but I had what I described at the time as “visual effects” after my embolization. They turned out to be either negative scotomas or scintillating scotomas. The way they presented was that I got a little blur in my vision. If I was reading something, I found I was struggling to read the words. The blur was almost central vision, perhaps a bit lower left quarter. It would grow into a teardrop and then split into a large C shape with jagged edges, through which it was impossible to see. All the colours of the background were there, but like a frosted window or interference, impossible to make out detail.

A scotoma is a migraine-related thing, an aura. Mine was triggered by the contrast material. I had several weeks of random scotomas/aura following my embolization and then a shorter bout after an angiogram a couple of months later. I would say any migraine like trigger could start them. And it is perfectly possible to have aura without a migraine. I’ve read that.

In my case, they resolved, as they appeared to be caused by irritation or something from the contrast material. However is there any possibility that what your blurring is “just” a scotoma? It would be driven by some abnormality (but we know you have those) and typically last 20 minutes, maybe 40 minutes before clearing. Are your episodes anything like that?

You’ve knocked scotomas off your list of possibilities already, I assume?

Wishing you the best,

Richard

Hey Mike, Dick, TJ, I figured I’d weigh my 2 schillings for the heck of it. First, I’m terribly sorry for what you’re going through. I know the frustration of hearing from the doc essentially, “we don’t know and we don’t know what’s next.” It can be infuriating. Second, I’m the sort of person that thinks, sometimes to no avail, there has to be an answer to every question. Somebody has to know! But rather than spending many hours mired in journal after journal of what it could be, I’ve instead come to the point of coping with what IS.

I can’t drive. Okay, I’ll learn what my options are for walking. And from this I’ve found a Kroger 1.4 miles round trip so during the day I can walk to Kroger, get milk, or cumin, or some other random ingredient we need from the store and get my exercise in for the day as well (win/win).

I can’t see well. Okay, that’s a little trickier, but I can listen to books on tape, learn to use accessibility aids in Windows, and learn the JAWS program for basic desktop navigation.

I can’t do stairs well. Okay. I contacted the department for the blind and visually impaired (https://www.vdbvi.org/), got a cane, and in the process got a puppy Sumo to help me out around the house.

I can’t work well, okay. I contacted the social security office and found a multitude of options for me once the weather is warmed up. Also, I found that the bus transportation in the city is free with those who are visually impaired!

All to say, what I thought was a closed door was actually just a “use alternate entrance” or “detour.” If you’ve set your mind to survive and thrive, there is nothing you can’t overcome! What’s more, your overcoming said obstacle may have the way for those that come after! Hope it continues to go well! Blessings as you go!

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My family owned that bar… usually a priestr and rabbi wd walk in just after the patrons you mentioned… I am not making lite of your situation.

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At the end of the day we have to find some humor in our situation… unlike TJ I would have walked into the bar door trying to get into the bar and hit my head, the head doc would have said hey we should take a look at that you might have a problem but we’re not sure we’ll be able to figure it out and the insurance guy would say give me your wallet and your car keys…

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What makes it really fun is when the priest and the rabbi walk in together! I know you aren’t, you actually with the award for the first smile of the day.

Friend of mine lives the other side of Michigan. He and his friend (and his pastor) have started a Tuesday night discussion group - they call it “Doubt on Tap” and yes, they vary it but they meet in bars/brew pubs. Two of the people who frequent the group are, you guessed it. “A priest and a rabbi…” They have a lot of fun with that but when you get an Episcopalian preacher, a priest and a rabbi - and a real estate sales person and a drug rep as the core of the group, it is fascinating. Only problem is it involves alcohol and about a 2 1/2 hour drive - I really shouldn’t do either at this point…

Hey Random,

More serious thoughts to come later - but inquiring minds want to know - how much do 2 schillings weigh?

I know how much a dollar weighs, I know how much a Haitian gourde weights (or could find out real quickly.)

I don’t know how much a schilling weighs.

TJ

:slight_smile:

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Richard,

Since I didn’t really know what scotomas are until yesterday, they win the award for the shortest time on the “What screwed up TJ” list.

Seriously, not from the embolizations as much as the contrast for an angio or a CT, I have had some vision issues but they have typically cleared out in the time it takes my system to get rid of the contrast - so I would drink like a fish - but also like a fish - non-alcoholic.

Working on another post with some other thoughts on this. If I had to describe the blurry vision, probably the best “it’s like this” that I could come up is when you are outside for a length of time in the winter and it’s really cold. You go inside and suddenly your glasses fog up. But it’s not like I can’t see anything. I can see the green bar across the top of this page (it is green, right?) but the words in it are sometimes blurry like hazy and sometimes blurry like you typed it using an old fashion typewriter and then tried to retype it and missed getting it lined up to type on top of the first by .005 inches.

Here again is part of what this group is so good - it is so hard to explain to someone what the sound coming from inside my left ear is like - when they can’t hear it and if I tried to make the sound, I wouldn’t hear it the same so it still wouldn’t work…

You asked so: https://en.m.wikipedia.org/wiki/Shilling
" During the Great Recoinage of 1816, the mint was instructed to coin one troy pound (weighing 5760 grains or 373 g) of standard (0.925 fine) silver into 66 shillings, or its equivalent in other denominations. This set the weight of the shilling, and its subsequent decimal replacement 5 new pence coin, at 87.2727 grains or 5.655 grams from 1816 until 1990, when a new smaller 5p coin was introduced."

Never wanted to know, but now I do.:grin:

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TJ

And in regard to your blurriness still… does it just suddenly come on? Does the blur grow out of mid vision but just not reach full coverage of your sight (leaving a border around)? Does the blurriness go after a while, e.g. 20 to 40 minutes?

Aura are triggered by things like bright lights, strobe effects, all sorts. The same triggers that a migraine may have. In my case, my brain was reacting to the contrast material or the PHIL glue or something else about being assaulted from below with a catheter. Then, for the first time in my life, that irritation of my brain plus the bright sunshine or some other trigger drove the scotomas.

I’m still thinking, until you tell me something like “they last all day” or “all of my sight goes in one shot” or something, you could be seeing a scotoma.

Very best always,

Richard

R.

The only changes when it is on are changes that can be linked to the prescription of my glasses. I have trifocals and sometimes the change in that will make a difference - in other words - if I do the “old man leaning forward to read something through his bifocals” thing, then sometimes it can be different.

There are never “patches” where it’s clear and other places where it is funky. The only thing I have close to that is my peripheral vision in my upper right is diminished compared to the rest.

Does it all come at once - yes. It is usually either a gradual but all at once or a sudden change - but that change is usually because of a change in activity. I.e. Put my computer away and go grill burgers - suddenly I’m going from 2 to 3 feet to an entire back yard and that will make it change dramatically. If it gets blurry and I change what I’m doing, sometimes it can come back in focus shortly (20 to 40 minutes would seem to be a potentially accurate time range. If I don’t change what I’m doing, (I.e. Working around inside the house all day) then it can take a long time for it to adjust away. I’ve also noticed that sleep makes a difference – a short nap can “reset” things as well.

Hope that makes sense,

TJ

Well, I’ve no idea but an neuro opthalmologist probably ought.

Or, you’re just unique.

Again.

Maybe mention scotomas and aura to the NO and see if it lights any lights.

Otherwise, hang in there. Nobody should expect us to do more than our general best at how we cut our way through life. You’re doing as well as anyone reasonably could.

Very best wishes always,

Richard

Yeah You put it togetner very well

Thank yoj. Growing up ovver a tavern I overhearc many of those bar jokes. Sometims a kangaroo walks into a bar, then a bunny…

I just had cataract surgery. Mild situation, I know -… I WANDERED .in here from EXTREMITIES. Anyway, post op floaters can be a sign of retinal detachment. As does the sight of lace.

TJ,

Not that this is good news but I’m currently having scintillating scotomas for the first time in 2 years. Can’t think of a reason why I would suddenly have one. Will be interesting to see what happens next… maybe! :astonished:

Richard

… seems to have passed without incident :slight_smile: Slightly thick head. Nothing else seems to have gone on.

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