Vision issues--what do you experience?

[dkdean]

I've been having vision problems for the last 3 weeks (with an 'event' tossed in the middle--numbness, confusion, etc).  Just wondering....for those who are officially diagnosed with the CM--what type of visual disturbances do you experience?  Do you have them all the time?  For periods of time?  Intermittantly?  Trying to figure out if the visual piece is 'low-lying cerebellar tonsil' related.  Thanks, Kim

[*Stormy*]

Hi Kim

I have several and unfortunately none have been resolved from surgery at this point. This is what I have:
-floaters and squigglies
- sensitivity to light (I see halos around lights, they streak and basically blind me)
- Double vision due to weak eye muscles
-Vision will blur in and out making it hard to read
- Ghost images (I will look at something and then look away and it will keep flashing in my sight--very annoying!!)
- bad night vision- as soon as there is low light I see a lot of static which makes it hard to see, I haven't driven at night for a year now.
- Sparkles in bright light- like what you see before you pass out
- Vision jumps and jerks especially when concentrating on print

Most of them are permanent...I notice the ghost images get worse with a headache..somedays it is constant all day and other times it's not so bad. Same with the floaters...The double vision gets worse at the end of the day when I'm tired.

What type of things are you experiencing? I am going to an ophthalmologist at the end of this month to find out why I am still having these things since the pressure has been released. I will let you know what they say!
Carolyn

[stephanie_C]

My symptoms come and go, and from what I understand that is a very typical presentation for CM patients. The visual problems that I get are just blurry vision (I can't focus, like I need glasses, even though I have 20/20 vision). That particular symptom is new to me in the last few months. But it will last for a few hours randomly then go away.

Carolyn- I don't think I realized that you didn't get any relief from your surgery! Did ANY of your symptoms go away? What do you think happened? I'm so sorry you are still having so many problems!

[dkdean]

Thanks for sharing.

I am trying to figure out how to identify mine (since I am new to these vision changes), but the constant right now is as if I have rubbed my eyes (while closed)--you know how you get the wavy brighter/darker spots/shadows?  It's like that all the time--even when I close my eyes (and am not rubbing them).  The 'fogginess' comes and goes--almost like there is a curtain covering my eye--like if you blinked a few times it'd go away, but doesn't?  Floaters, but I don't know if that is any more than what I usually notice.  The pixalated vision I had when looking at stationary objects has thankfully gone away--that was going on for a few days and was very odd.

[*Stormy*]

Stephanie...sorry I hope I didn't sound negative...I did receive some relief. My worst symptom was that I had a very stiff and painful gait and that DID get 80% better!! A few little things did as well but I have been told that it can take up to 2 years to see the full results b/c when nerve damage happens it does take a long time to heal. Again, it was due to repeated misdiagnosis which let my symptoms snowball to a level that they shouldn't have. As for the rest, I am looking into other things so it could be that I have something else running with the Chiari...we'll see. Still I am grateful everday that it was caught and that I had the surgery b/c I could see me in a wheelchair if I hadn't.

Kim..What you described is what I call kaleidascope effect...I really see that when I am lying in my bed and it is dark..another reason that I don't drive at night...very distracting!! Also, I get these flashing bright lights sometimes...usually it is blue but sometimes yellow. The hardest part I found is putting a name to some of this stuff and then trying to explain it to a dr!!

[dkdean]

Carolyn--Yes, my explanation has been "wonky" vision....and I do not think that appears in the medical books!! ;)

[rod44]

I  also find it hard to describe my vision problems to my doctors, it is not blurred but it is like objects in my line of sight are shimmering or moving even if they are static. walking on a floor with multi colored tiles is a nightmare, my night vision is poor and I dont like when it is to bright.....
I also have Nystagmus an uncontrolled movement of the eyes.
My Physiotherapist call the vision jumping "Oscillopsia"


Ray

[stephanie_C]

Have you had decompression surgery yet? My NS told me that I have that Nystagmus now, and I never did before. It's one of the reasons why I am finally considering having the surgery. I figured that as long as they were just symptoms, I could live w/ it, but when it got to the point of having clinical neurologic finding, I thought I should start down the surgery path.

[rod44]

Hi Stephanie, no I have not had surgery yet as I am having problems getting a NS I am comfortable with, I also have a Syrinx and an Intradural Cyst and need to get a NS with experience of this combination of conditions.

Yes when you experience neurological symptoms then it would be wise to think about surgery as some neurological damage may not be reversible.

Ray

[jenbes]

My vision is like watching a fuzzy TV channel.    It may be because I work at a computer all day. Does anyone else experience that?

[rod44]

Yes very much so.

[shanmomof3]

i have several different vision problems and most are intermitent, they just come and go when they want to. But there are a couple that are always there like I've lost most of my periphial vision and everything seems cloudy all the time. The ones that come and go are the halos, things seem like they are moving or shimmering, if i try to read a book the words look like they are swirling or floating. I know there are more but cant think right now ;~p

[EdwardPB]

Eye floaters, when I sneeze, for years. In the morning, it takes longer and longer before I can focus my eyes.
Light doesn't bother me as much, as it use to. However, glare bothers me significantly more, especially at night.

[dkdean]

Ahhh, Shanmomof3--Yes, my peripheral vision in the right eye is bad right now.  I had just a little bit of tunnel sight in it during the event which led me to the ER last week and it hasn't come back correctly yet.  .Honestly though, it is getting harder for me to remember what completely clear vision looks like (and I am severely nearsighted--I have the movement, shadows, and fogginess with contacts, glasses, or without both)--and it's a bit unnerving.

[shanmomof3]

yes it is very unnerving! I'm near-sighted too, but now cant see very far even with glasses. Oh, one i really hate is at night it seems like all the shadows are moving and i always think something is there but its not. Glare is a huge problem for me. But i dont notice as many of the eye problems as i did because i'm not driving anymore. ~ Shannon

[dkdean]

So, do you all explain the vision disturbances with what they look like to you?  I have an appointment next week with a neuro-optha and am thinking my descriptions won't be good enough to get my point across.  And, for those who've seen Neuro-Optha's, what can I expect?

[northernstarmn]

i have what looks like a kolideascope of colors sometimes them seem as theough they are coming toward me other times it seems like they go away, Also have blurry or cloudy vision,and sometimes its just too darn hard to see, veru light sensative, i havent driven after dark in Oh 8 yrs now because the lights coming towards me are just too much...

but carolyn gave the best discription...i can associate to most of her issues,

since surgery they havent gotten better nor have they gotten worse.

[cyberpyxi]

When I saw my eye doc, I told her that it seems that my vision changes many times a day... as if someone that wears glasses had their eyes switched with mine. It's like my script actually changes. She explained that a good portion of that, and the the sparkles I see, ghost images, fake bugs (when I think i see something flying towards me, but nothing's there), and the like are probably due to the fluid in my brain pressing against the back of my eyes, altering their shape ever so slightly, as well as swelling of my optic disc, also due to my Chiari's. She also said that sometimes, these effects are perm. even if the surgery is done. I'm hoping I don't fall into that category, perm. eye problems.

Also, a though... what meds are you taking? I ask because I was given Topamax for my CM, and one of the side effects of the medication can be eye disturbances, up to and including vision loss.

[*Stormy*]

When I go...I have a full list typed and I'm just going to hand it over...that is my new way of dealing with things. That way I feel like they can read it and then ask me for more specifics!! I'm so tired of trying to get the point across especially when the words don't seem to come out right.

Edward...glare..that is another one. That is why I don't drive at night too, each time a headlight hits my vision it will stay there for several minutes, each time that happens it will just add to it. I can't exactly drive with my eyes closed! The glare is also what brings on a lot of the ghost images too..

Carolyn

[cyberpyxi]

I used to get that so bad. I just got myself 2 pairs of glasses that have amber-vision tinting.
the amber-vision takes the glare away, for the most part, and makes things easier to see due to cutting the brights out, but better illuminates everything else. Just a thought...

I know I can't put the site where I got them up here, but I get my script glasses online for under 20 dollars a pair, tinting included. You're welcome to PM me, if you'd like the website.

They may not help you drive, but I can bet they'll make it easier when you're "passengering", at least.

[dkdean]

I just started on Elavil--(for what the neuro dx'd as a migraine without headache)--It's 10mg.  Other than that, no changes in meds, etc.  

The vision started changing about 3 weeks ago--I changed my contacts thinking they were dirty, called the eye dr thinking my rx had changed....then 5-6 days after that, my eyes got really bright/had a hard time seeing/couldn't read--the confusion with words set in and then a travelling numbness up my right side (fingers/hand/arm/cheek/tongue/teeth).  The numbness lasted about 30 min. and the confusion/difficulty remembering words/forgetfulness lasted for a day or two more....the vision has continued to stay weird.

Was diagnosed with a TIA in the ER--MRI also showed the low-lying cerebellar tonsils(6mm)--then a supposed stroke (since symptoms lasted longer than 24hours), the possible MS (due to symptoms and 2 brain lesions)....now it's supposed to be a migraine w/out headache.  So, although I was told the the cerebellar 'stuff' wouldn't cause any symptoms, I am questionning that assumption---esp after the reading I've been doing.  Still not sure what's going on, but I am hoping to find out--or at least be able to see correctly!!!

[dkdean]

Great idea on the typed list....I had started writing stuff on a calendar, but that's hard to take with me.  I will get my info in a central place!  Thanks.

[cyberpyxi]

In looking at the possible side effects of Elavil, I did not see any about vision changes (other things, goodness yes,but not vision). How is that med working out for you? I've heard many good things about it (in general, not specifically for CM).

And I know what you mean about dirty contacts. I had to stop wearing mine, because they always did feel/look dirty. It was hard to explain... And I always felt that there was goo in my eye. Contacts all of the sudden started to over dry my eyes, and that was just the end. After the dirty, the goo, and then the drying out... I was just more content to wear my glasses. Honestly, though, I still get those other symptoms.

[burdzmom]

Hi there. I am eight weeks post op and still experience vision issues. Floaters ( like knats whipping around the sky) very sensitive to light. Difficulty adjusting from light to dark, if I move to quickly, my vision is blurry and then I get dizzy. Hoping some relief is headed my way. Best of luck with everything you are going through. This is very difficult for me emotionally and physically. I hope you find a team that is a good fit for you.

- jilian

[ChiariWolf]

Hey, glad you asked this question! I had no idea so many others where having many of the same symptoms. Frankly this is one thing the sugery did not help much. Squiggles are better but definately not gone. Most of the symptoms are very intermitent and very unpredictable. The only thing seems constant is that some shrill sound freqs or certian light will trigger it. Light is mostly direct sunlight or flores