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AVM Survivors Network

Detective not a Doctor

Hey all,

I want to tap into the collective wisdom of the group. Let me try to explain.

First background for those who might not have read that part…
41 years of battling this AVM. Started in left neck and shoulder. Has expanded to very near my spinal cord and up into the brain. Treatments were in 1978, 1986, 2009 and 2018. Most of them were of the type I could recover and go on and live a relatively normal (you’d need to know my family to fully understand the irony of that statement) life. This 2018 procedure solved a big potential problem (major brain bleed potential) and left me with a whole bunch of after effects.

One of those after effects is that my vision has been impacted. I had a major case of double vision that occupational therapy was able to clear up a lot of it but not all. However, it’s no longer a quality of life issue and we are grateful for that. Maybe a more accurate statement would be that it has diminished its impact on my quality of life.

I have also had a significant problem with changing focus. If I’m doing something close up, then I look up and away from where I am, my eyes have a hard time making that switch. Eventually, they do adjust but it can be anywhere from 10 seconds to several hours until it adjusts.

After a long period of waiting along with appts with a Neuro-optometrist, I finally got in to see a Neuro optho doc on Monday. He said basically two things:

  1. All of the major risks to losing my vision in part or all of it seem basically fine. There are some irregularities but at this point, they are not things he is concerned about beyond watching them. He said there is a very good chance those things have been that way since I was just a wee little youngster. In addition, if it were one of those, the blurred vision would be constant and it is frequent - more than once or twice a day but not all day every day. That’s the good news and the not so good news.
  2. The not so good news is that since all of that checks out, it is highly likely that the vision problems are tied to my headaches. The way I see it that means a couple of possible things:
    • There isn’t a “take a pill and cure it” type of possibility.
    • We need to try to figure out which came first - do the headaches cause the blurry vision or does the blurry vision cause the headaches. And there is no easy way to figure that out.
    • We need to figure out what sort of lifestyle adjustments might impact either the headaches or the blurry vision and how those changes can be put into play in my real world - and what that means.

That’s where the detective not the doctor comes in.

So, we can add my eyes to my right leg, my left arm and hand, my left diaphragm, my left lung, my left vocal cord and the left side of my esophagus and trachea, the left half of my tongue, my hearing in my left ear, and numbness on the left side of my face and an often mind numbing noise in my ears that literally drowns out regular voices. These are all part of the “we know what’s wrong, or we think we know what’s wrong but there is really nothing we can do about it.”

Yay…

I’m overwhelmed with excitement at the good news.

But I’m also not going to give up and settle for where it is at unless this is truly the best we can do. That’s where I’m hoping you all can help me.

Do you…

  1. Know of any studies or anyone who has navigated the headache/blurry vision connection? I’m thinking that while it is probably not the whole thing, there is a connection. The way I look at it, if I can find and address a connection between headaches and blurry vision and it reduces one or the other by even 10%, that would be a big win in my book.
  2. Know anyone who has this headache/blurry condition that addressed it by altering the prescription of their glasses. Let me explain. Let’s say that my current prescription requires a setting of 5 for me to see clearly when my eyes are not in the blurry mode. If I got my glasses at a setting of 6 or 7, would it “rest” my eyes a bit and require less effort and therefore less blurry?
  3. Prior to this, I was a “multi screen” computer guy. I would often have two or three monitors plus my iPad open at once. I got rid of most of it early on because my brain couldn’t handle more than one screen. Shoot, for the first three months, I got nauseated just looking at my ipad sitting on the coffee table. I’m wondering, now though, if that’s changed. I wonder if my brain has a harder time with screens moving around and would actually do better if I went back to multiple screens where I had one or two that were basically stable - e-mail, calendar, to do list and the other was the one where there I might be moving from one web page or program to another.

In other words, I think that a way to describe it would be to say that my head has a harder time processing a new screen on one device - the kind of bouncing around from this to that to the next thing and would maybe do better if it was a matter of - e-mail is over here, writing is here, blogging is here and such.

Am I smoking something or is it worth trying? (And believe it or not, I wrote this before reading the post about Cannabis).

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Right off the bat I know of this one: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3945764/

It is peripheral vision loss post AVM rupture/treatment. There are others as well. If you are thinking on using weed to treat the AVM, I don’t personally see a scientifically viable correlation. I suppose it might help, but I know that topic is a bit off topic for this thread. Blessings!

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Hey TJ,
I too have some issues with my vision (but not to the same extent as your own). The neuros have not taken any ownership to my on going concerns, in fact quite the opposite ie ‘Well, it’s nothing we’ve done, so it must be YOU’. Firstly they pointed to dental, so I had all of my top teeth removed, it wasn’t dental. Then they pointed at audiology, so I had that tested, but all was fine. Then came ophthalmology, they agreed that there was an issue but pointed at neuro as being the cause/effect. So I have 2 specializations pointing at each other, Neurology and Ophthalmology.

Your statement “We need to try to figure out which came first - do the headaches cause the blurry vision or does the blurry vision cause the headaches. And there is no easy way to figure that out.” really hits the nail on the head and because both interact with each other obtaining any great answer, for me, has been near on impossible. The neuros say its my eyes and yet the ophtho say it’s my brain and although it doesn’t help me at all, I can see (no pun intended) why each has made their own statements.

Sometimes I will get a headache which effects my eyes, other times it seems I have visual issues which gives me a headache. It’s like that old saying: ‘Which came first, the chicken or the egg?’ but depending on the day it can be either or either, there is no pattern, there is no rule and therefore there is no answer for me. If I had a defined pattern I could have a defined management plan, but in this case I have neither.

You say detective, I say defective lol lol lol ggrrrrrr and it frustrates the hell out of me.

In regard to screens, there can be a few differing issues as it was pointed out to me. The first (and probably most obvious to me) is the differing brightness’s/hues/contrasts. The difference can be minimal to the eye, but be huge to the brain and for the brain to be making continual adjustments for each screen can become overwhelming.

Another point here is what is known as the screens ‘refresh rate’, this occurs in milliseconds but for some screens it can be 100mS where for another device it can be 300mS, we again may not notice it visually, but our brains do. It’s a similar effect as for people with epilepsy and strobe lights, only at a microscopic level for us, in comparison.
Another point can be the angle and distance from the screens, we may only be talking a couple of inches difference, but enough that both our eyes and our brains need to adjust each and every time we change.

Personally, I have a similar issue when driving. When we go out, the wife often likes to have a wine or two (where as I have a whine or two LOL) and I do most of the driving. We live in the country, driving down the road I can be fine. Drive past a row of trees, with the sunlight flashing through them and Ohh, boy, do I notice it. The problem here for me is today I can be fine and have no issue, where tomorrow I can do exactly the same trip at exactly the same time, get home and have a headache from hell, there seems to be rhyme nor reason. Is it the light? Is it my positioning? Is it tiredness? Is it my speed or the frequency of the flashing? Or is it the whine or mental stress?

Each and every one of these variables has an effect, trying to figure out which cause has which effect is near on impossible from my experience as on differing days I’m affected in a differing way by each differing amount.

Is it worth trying? HELL YES!!! If it helps then, IMO, hell yes, give it a go. We are only going to learn what works best for us, as individuals, by trial and error. None of us have exactly the same biology nor physiology, so the idea “It didn’t work for me, so it won’t work for you…” is arrogance at it’s pinnacle IMO. We trial and if it works, brilliant. And if it doesn’t then we learn and move on from there.

Now, I doubt you’d call my words here as ‘wisdom’ but rather just meandering thoughts on the subject. Although those meandering thoughts have been many as this is something I have thought about (and experimented with) extensively, just to figure out “What works best for ME?”
(And no, I can’t believe you wrote this before reading the post about Cannabis :smile: :wink: ).

Merl from the Moderator Support Team

Merl,

I guess the stakes are a little lower if you are a defective detective than a defective Doctor?

As I’m reading your description and nodding in agreement, two things come to mind…

Your symptoms and mine really are not that terribly separate. Using the baseball analogy, we might not be in exactly the same position on the field, but we are playing the same game.

You know what would be really cool? If some Neuro people who know a lot more about the brain and eyes than I do would develop a computer, monitor or laptop that has the ability to either sense what/how your eyes are reacting or has extremely detailed adjustments so that you could fine tune the adjustments to the color, the refresh rate and all sorts of settings to help reduce headaches.

It would be really high tech if it were possible for that computer to do a retinal scan and based on the readings in your eyes automatically adjust the settings to be what you need them to be. Dreaming? Yeah, but hey, it would be really cool.

A pleasure to “chat” as always.

TJ

Hey TJ

“…if it were possible for that computer to do a retinal scan and based on the readings in your eyes automatically adjust…”
Now that isn’t as far fetched as you may believe TJ. There are some workplaces that have retinal scans to detect drug/alcohol impairment now. How reliable these devices are is debatable but the technology is out there.

“…Your symptoms and mine really are not that terribly separate. Using the baseball analogy, we might not be in exactly the same position on the field, but we are playing the same game…”
I agree, that’s why these networks work so well BUT try telling that to a neuro, it’s like you are trying to do their job for them and they object and uhmmm and ahhhh. They don’t like that sort of thing at all. It’ll be because it’s a different part of the brain or a different type of condition or there’s absolutely no correlation what-so-ever. Been there, done that ‘ohhh no, no, no nothing like it… ….totally different…’ Personally I think it’s more another protection of THEIR territory.
As I’ve been told before “You, you’re just the patient. You wouldn’t know…” Tsk

Merl from the Moderator Support Team

Merl for the Win!

That actually reminded me of a somewhat funny story. About 10 years ago, I slipped on some ice on the way into church (not an uncommon hazard in the snow belt regions). By halfway through church, I realized that this was more than just a slight ache in a knee. By that evening it was elevated and iced (football was on, so it was okay). By Monday morning, I had researched enough different websites - Mayo, John’s Hopkins, all ones with substantial reputations and I knew that I had torn the meniscus in my right knee. Me to my wife (the RN), “I’m going to call Dr. Sam when they open today and tell them I tore my meniscus.” Her - “Tell them you hurt your knee but don’t try to tell them what it is, they won’t like that.” Long story turned into a not quite so long story - it took me 24 hours to diagnose what happened with my knee. It took them 2 weeks to get x-rays and scans and to tell me to continue to wear a brace and let’s see what the next couple of weeks do. No improvement. Finally, 6 weeks after I fell they agreed it was a torn meniscus and scheduled surgery. I didn’t tell the doctor, “See I told you so!” because I think it’s wise to not irritate the people who are going to be sticking sharp things in your body.

But I told him so and I was right. :slight_smile:

TJ

PS Did you know it is possible to successfully play euchre 1 day post op and on some fairly decent medications? We had a euchre party planned at a friend’s house - like 30 people. If I didn’t make it, it would have thrown off the numbers, so I came, I had a good time and don’t worry, I didn’t drive.

Damn it, I hate to admit when a woman is right :smile: , I never hear the end of it “I told you so” TSK :roll_eyes: But your wife is correct "…don’t try to tell them what it is, they won’t like that.” I found this out the hard way. But I’d been telling them for years there was an issue only to be discredited every time, so when they came out with ‘Ohh look what we found’ I just had to say ‘told you so’, to say the reaction was less than positive would be an understatement :wink: But me being me I just had to, didn’t I. DOH (And my wife’s sitting here saying “No, you didn’t ‘Have to’ at all”) Don’t you just hate it when they are always right. :LOL:

Merl from the Moderator Support Team

TJ

Good evening! Long time no speak, though I’ve been keeping up a little in the background.

Two things…

  1. Screen strain. My son uses a program called f.lux to manage the colours on the computer screen. It kicks in in the evenings and starts to take the blues off the screen as the evening goes on. I don’t know if you can set a level at any time if day and stick to that but it might be worth having a look, or at least having it on for the evenings.
  1. I agree with Merl and Mrs V that giving your own view of your diagnosis to a doctor is poor practice. However, I followed this advice myself when I discovered my AVM and I would say consequently it took from April to August to go from GP to ENT at hospital, where if I had been more straightforward, maybe I’d have gone straight to neurosurgery. She even referred me for tinnitus, rather than pulsatile tinnitus.

At the end of the day, any professional expects you to be consulting their expertise rather than be told an answer… doesn’t matter if they are in medicine, cookery, IT or insurance, none of us would value someone asking us to act as “buyer” of something the customer has already decided to buy. We try to validate the choice or arrive at a good design or product or recipe or whatever it may be.

Hope you’re having a good day.

Very best wishes

Richard

Hiya TJ, It’s good to see you keeping your marvelous sense of humor throughout the journey. I’ll give you a decidedly amateurish/non-technical suggestion. Indeed, my middle name is “counter-intuitive.”
Look at your blurriness/slow to re-focus issue as a muscle metaphorically. Then intentionally stress it to strengthen and speed re-focus. Maybe build up slowly from every other day to twice a day. You can chart the progress over time to see if the re-focus time diminishes and headaches lessen. l wish you all the best pal.
Greg

Greg,

I like it. A question for you - if it’s a metaphorical muscle exercise does it burn metaphorical calories too? I like the concept of sitting in my recliner burning calories talking with all y’all. (My friend from Tennessee must be rubbing off on me…)

Seriously, Greg, here’s a puzzler for you. I have yet to be able to determine a pattern - like, 1 hour of screen time will take 15 minutes to refocus, or something like that. There are times where I will be online for 15 minutes and it will take 2 hours to recoup. Other times, half a day with no problems - other than the fact that I have more things I want to talk about than my head, my fingers, my family priorities, will allow. Oh and this certain organization that distributes certain funds for people with life altering long lasting (or both) accidents or illnesses who watch applicants carefully and very closely.

It’s amazing how there is a lot of information out there about auditory processing disorder and visual processing disorder (I guess they should both be plural since there are more than one version of each) but it’s all about kids and mainly about learning disabilities in school. I have found a little bit about TBIs and APDs and VPDs (do I get extra points for using acronyms?). There is often a relationship where the disorder comes after a TBI, but that’s all I can find. There has to be someone at Mayo or Johns Hopkins or somewhere who has done more studying of them?

Okay, ramble done…

TJ

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Hey TJ,
I hope you don’t mind me putting my 10cents worth in here, but these are areas I have both some professional and some personal experience with.

I’ll start with personal - Patterns - I too look for patterns and OMG, this can be a really difficult subject to define for me. I say this as I have found there are just too many variables. Some days I can complete a task with no issues whatsoever, other days I can attempt the exact same task and be lucky to get 1/4 of the way through and become overwhelmingly symptomatic. I’ve tried to vary my approach, vary my timings, vary my length doing the task etc, etc, etc but still not find a pattern. I have thought that environmental factors outside of my control could also have an impact. ie heat, cold, bright light, barometric pressure. I also try to analyse What did I do yesterday? Did I do too much? Over exerted myself.
Is it medication related? Have I taken my meds? Do I need more meds?
Is it diet related? Have I eaten enough?
Etc, etc, etc, etc, etc
I find it a bit easier to accept if I can see a cause/effect but it is frustrating as all hell when the pattern just doesn’t seem to be there. Why? WHY? WHY? GGgrrrrrrrrr

Sorry, but no extra points for using acronyms :smile: . It’s only the people affected or the professionals in the field who have any idea what those acronyms actually mean and even then trying to give them set criteria (as many professional ‘try’ to do) is near on impossible. In the science field (and let’s face it Dr’s are scientists of sorts) a common theory is A+B=C and when ‘A’ and ‘B’ have a set determinant and quantity then the answer must be ‘C’. But for us there can often be too many variables, take, for instance a TBI, it isn’t just A+B, but rather A + B + C - D x E / F x G… and the answer is ???, there is no set answer because it is all so individual, it’s all so variable. Variability in type of injury, location of injury, the impact of the injury and of course the psychological impact too.

In my tertiary education we were taught all of the theory ie the book says ‘X’ so the answer is ‘X’ and in theory, yea, that works. Then we get into the real world and the theory goes out the window. The reason they use ‘X’ as an example is because ‘X’ is at the end of the alphabet. You have all of the other letters as options first. In the real world you hardly ever get to ‘X’.

Professionally, I worked for my client, not the agency, not the government funders and not the damn alphabet/theory, but the client. The agency and the govt had set criteria, set roles I was to perform, but the client didn’t. I saw my role as assisting the client, so rather than trying to get the client to meet the criteria. I tried, wherever possible, to bend the criteria to meet the clients needs, this allowed me to make the outcomes achievable for that individual client. Individuals do not fit into neat little boxes/criteria.

An example of those criteria could be ‘John needs to learn to shop’ simple, right? WRONG. The shopping is one of the last things John needs to do. First he needs to know what he needs to shop for, so he needs a shopping list, but to make a shopping list John needs to think of what he needs to eat, so John needs to make some sort of menu plan. Now, John may like steak but eating steak 7 days a week can be expensive, so John also needs to budget his money. These are all steps that need to occur even before walking out the door to go shopping. But the govt department has a set criteria “John needs to learn to shop”. If, as John’s worker, I follow those set criteria, I take John to the shops, he spends all his money on steak he has food for the week, great. But then John has no money for electricity to run his fridge to store his food and it all goes rancid, but the govt set criteria have been met. Job done. And that’s without even going anywhere near John’s particular disability. If I’d worked solely for the government, the goal had been met. Tick. But I worked for the client, so I had to take a whole-of-life approach. I had to take the whole 'A + B + C - D x E / F x G… ’ and not just the A+B=C. This is also where govt fall down with their acronyms, they are all too narrow. And so are their services. They tend to forget the people outside of the boxes.

Ohh lordy, lordy, lordy. I’ve just read back through all of that, now I’m with you TJ “Okay, ramble done…”
(EDIT:) P.S. I don’t fit the box either TJ

Merl from the Moderator Support Team

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Hiya TJ and “mod support”,
You guys are struggling w/ finding correlations and I tried doing that for about 30 years w/ my seizures. Alcohol, sleep, stress… have all seemed predictors at times but not easy to gauge. So, I just try to monitor them and use Marcus Aurelius’ approach–everything in moderation.
So, because I’m dumb as a box of rocks, I’m really just offering emotional support for what that’s worth. Sometimes I watch inspirational videos, and they usually have slow motion athletes w/ background music and heroic messages. I’m not claiming to be a hero, I’m galaxies away from there.
But here is my concern. Because I (we?) don’t look/act/fit into a heroic image, I tend to under-play the serious difficulty dealing w/ emotional and physical issues. Am I just being sour grapes here? I sure as heck don’t want to fall into a victim mentality.
Truth be known if I wasn’t so often emotionally immature, it would be sufficient to acknowledge my place in the universe without complaint. After all, self-validation, like “job well done!” is more than most people get. Well guys, I guess I bested your rambles…mine is a ramble I can barely make sense of myself. Be well, Greg

Hey GregF,
“Am I just being sour grapes here?” No, I don’t believe you are. At some point I believe we have to get to that thing called ‘acceptance’. Personally I find, some days, that acceptance thing is easier, other days, not so easy. On some very symptomatic days people can see I’m battling and will sometimes comment. I have a few throw away lines I commonly use “…you think I look awful? You want to have a look from this side…” “…it’s all shit, it’s just the depth that varies…” with a sarcastic little laugh after it.
I can be a little over analytical at times. I can get into a cycle of going over and over and ov…. the same things, and that’s never good. We have to eventually get to that point of acceptance and from there we can start to move forward. Rambling is good, it allows us to process the information we have, so you ramble as much as you like.

Merl from the Moderator Support Team

Greg,

Don’t put yourself down. You’re as good as anyone. Some people seem to think money or command over a large team means they are “greater” than other people. I don’t believe that. I believe we strive for society where we are all equal. Everyone who thinks they are better than me can go swing.

And I’m no better than your description of you.

We are just people.

Normal people.

With added weirdness of our own kind :rofl:

Cheer up. :+1:

Very best wishes,

Richard

I hate it when specialists just refer you around in a circle.

I have a different vision problem - at night, or in low light, instead of seeing a pinpoint or small light source, I see a cluster, like a set of half a dozen superimposed disks. This is very noticeable with headlights and stoplights. Needless to say, it makes judging distance very difficult. My solution is to not drive at night, unless I’m in the city where streetlights make it much easier. It’s been this way since I had the stroke. Doctors just point their fingers to each other and I don’t know what causes it still, much less how to fix it.

Another mystery issue I ended up solving myself was what I called “the hand”. After the stroke, and for months, all light sources would have five rays sticking out, arranged exactly like the fingers and thumbs on an outstretched hand. Once in a while it would happen to me again, and then it would (thank goodness) go away. No one could tell me why, I asked everyone including my gynecologist, lol.

What I noticed was that it was really, really bad after I had an eye exam. Later that night, my husband remarked that my eyes were still dilated - goes with the territory for really fair skin and eyes. But what he told me was that my eyes used to be like that all time when I was on the scopolamine patch - which I was for months after leaving the hospital. Bingo! Any time I was on medication that made my eyes dilate I would see the rays. It wasn’t my brain, yay.

Reading about TJ’s issues one of the vision exercises I was given during PT came to mind. Basically, I would hold my thumb up and focus on the edge of my nail, or on a little sticker I’d put there, or on the tip of a pen I was holding. The idea was to get really good focus and to move it slowly in and out, as far as I could while keeping focus, and hold it for a bit at that the near and far points. I’d do this not just straight in and out but in different quadrants, different directions.

The idea was to strengthen my eye muscles and train them to work together.

That’s not your issue TJ, but maybe doing that can give you some more data on whether there’s a range you can focus on or if it “sticks” at one exact distance. I had very obvious areas where I had a lot of trouble.

For what it’s worth, I couldn’t read at all with any sort of motion on the page for the longest time. Reader mode in Safari was the only way I could do it, and even then it took me a really long time to get through an article because my eyes had trouble “locking on” to the start of a new line. (I was very lucky that the PT figured out what was going on and called in the person who knew how to pinpoint what was happening. I’ve mentioned before that simply drawing a green line down the left edge of the text made a night-and-day difference in my ability to read. I hope there’s a simple fix like that for you.)

Someone mentioned bright lights through trees triggering headaches/nausea. That was definitely a migraine trigger for me as a kid, especially if I was already in a susceptible state.

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