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Vision issues--what do you experience?
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Vision issues--what do you experience?

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
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1179332_tn?1297482590
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
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1236570_tn?1276742125
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!
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1268921_tn?1288922656
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.
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1179332_tn?1297482590
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!!
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1268921_tn?1288922656
Carolyn--Yes, my explanation has been "wonky" vision....and I do not think that appears in the medical books!! ;)
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999891_tn?1407279676
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
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1236570_tn?1276742125
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.
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999891_tn?1407279676
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
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1230181_tn?1269954624
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?
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999891_tn?1407279676
Yes very much so.
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1041839_tn?1278685446
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
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1248623_tn?1406812015
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.
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1268921_tn?1288922656
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.
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1041839_tn?1278685446
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
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1268921_tn?1288922656
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?
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980510_tn?1282014546
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.
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1088046_tn?1272288996
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.
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1179332_tn?1297482590
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
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1088046_tn?1272288996
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.
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1268921_tn?1288922656
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!!!
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1268921_tn?1288922656
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.
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1088046_tn?1272288996
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.
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Avatar_f_tn
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
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992677_tn?1337358095
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
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620923_tn?1416285879
I get the floaters...blurry vision...and at times I know my eyes just r not focusing.....light bothers me too...especially florescent...makes me light headed and nauseated.......

I had jumping vision prior to surgery, Thank God, I no longer have that......

My eye dr told me I did not need glasses, but over 12 yrs ago I had to get a drug store magnifying  pair of glasses, I was told it was age related, but I still have problems seeing even with them...and I had a good eye exam ???

I always got extreme HA's with sunlight....so a hat with a brim is deff needed on a sunny day....

"selma"
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1268921_tn?1288922656
Bumping up....since my vision is still not right (5weeks solid now?)...did you notice the visual disurbances most of the time?  sometimes? for periods of time (ie. a month or 2 weeks or certain times in the day).  Had to reschedule my appt with Dr. Di due to my being out of sick days--so I won't see him until May 12th. Up to 25mgs of elavil per neuro-optha....but haven't noticed a change.  Although, apparently elavil can cause visual disturbances--lovely!  At what point can I determine if it's me or the medication causing issues?????
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620923_tn?1416285879
Hi...I understand the frustration u r facing with needing to know if what u r dealing with is a symptoms of ur condition or a reaction or side effect from meds.....this is one reason y I refused many meds over the yrs when I could not get a dx....it is a viscous cycle.

Not only can it be diff when u r on meds, but for those of us with multi dx's it is just as difficult....u wonder is it chiari, my thyroid, EDS, tethered cord....on and on...and u will stress urself out wondering.....the only thing u can do is stop the meds and see if u notice a diff...but make sure u talk to ur drs b4 stopping ne med as there r ways u must stop certain meds.

I had my PFD in May of '09, so this May I will be 1 yr post op!!...and, I still have vision issues...I am not on meds right now...and I do have other issues...so I know I am going to have symptoms......

Good luck with ur appointment w/Dr Di

"selma"
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1287323_tn?1277083585
Thank you for sharing this! Vision and memory problems have been my major issues (along with headaches) and I have had such a hard time describing what is going on, this will help me explain to my Neurologist when I go to my appointment tomorrow. I have noticed also that recently I have a white dot that flashes real quick in the upper right-handed side of vision 4-5 times a day, so I am assuming it's related and will tell my Dr. tomorrow. We will be discussing my diagnosis and referral to a NS so I am anxious to see all that he says tomorrow.
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1285653_tn?1288362229
My vision goes from blurry to tunnel vision. It is very sporadic and makes me very angry when it happens. Sometimes peoples heads will turn in BUBBLES like they are bobble heads. And when driving on the highway, I have heard those BUMP BUMP BUMP gator- bites and I realize that I am driving off the road. SCARY! SCARY. Luckily, my work commute is six miles including drop off of children at daycare. Daycare is less than a half mile from my home. I TRY to not drive anywhere with my children more than 10 miles away from home. Sometimes very hard for a single mother of three. :D

Hope that helps.
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1285653_tn?1288362229
I DO experience this a LOT! And I do work at a computer all day. :(

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?
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1268921_tn?1288922656
Florescent lights and computer screens certainly make my vision worse...as does sunshine.  But, the 'foggy' vision and floaters are an everyday occurance now.  When I turn my head, I can still see, but it's almost like teh fogginess then moves too....very odd, but I am getting more used to it.
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980510_tn?1282014546
last tuesday while at PT he was pulling or pushing on my neck like deep tissues almost Iam not sure how to explain what he did but after he was done he sat me up went over a few excercises I was having a hard time seeing but managed to see what he was doing- then i got up and walked out (since he said i was done) and i had a hard time focusing it took me about 1/2 my ride home before my vision was restored.....COMPLETELY ODD.... it had to have been something he done, because i just had an eye exame and doc said surprisingly my eyes look good- he associated the kolidescope of colors to visual mirgraines (which iam not sure i agree with because my eyes usually do not hurt before during or after i see them) ..

now since that PT thing I feel like something is on my nose ( ya know how when you take a bandaid off and it feels like its still there?,thats kinda what this feels like, but there is nothing on my nose-not even my glasses causing the feeling--I am stumped- on this one)..its weird too- could something have gotten pinched that affects my face??-it wasnt like this before PT but it is like this now? what changed?---- Sorry for hi-jacking your thread!
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1268921_tn?1288922656
Hijack away :-)  Yeh....I am starting to wonder with movement, esp anything jarring, b/c it seems to effect me....odd feelings (pin pricks?) on the top of my right ear last week, loss of hearing in right ear for 5 sec increments, a 'buzzing' in my leg?  All so very odd and they may not be tied to the same thing (and I am overly aware of any odd sensations right now too!!) but it's certainly on my radar.  I would totally think (IMO) that PT or massage could shift fluid, be tied to nerves, etc to cause those symptoms.
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1179332_tn?1297482590
Dkdean- Once my vision issues started there were there to stay but they would cycle in severity. I also found that some of the issues would get worse when the headaches did.

nmj1973- I get the flashes of light too...very annoying!! Mine are white too but often blue as well...definitely mention it to your NL as I'm sure it's related..

Warriormama- I'm there with you, I had 3 kids and am very careful when I drive...I don't do long trips and I don't drive at night due to my vision and dizziness. I empathize with you being a single mom..my DH was away for a few days and it was so frustrating having to arrange with other parents to pick my DS up!!

northernstarm- I have been getting that nose feeling too, sort of like it is numb ...I haven't had that till now (since surgery) and I was wondering if it was the med I'm on.. I would be careful with the PT, it sounds like it caused some issues. I noticed mine doesn't do very much at my neck, just puts the current on it and gives me exercises to try and stretch it out at home.

Whew..I think that's it LOL
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620923_tn?1416285879
For those with vision issues I wonder if u saw the Monday rant?...it is that the gov is making companies that make light bulbs stop making the regular incandescent bulbs for the florescent bulbs.

I know many of us have vision issues and this will not help matters and wonder what u all think?
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Avatar_f_tn
The NL i saw today said my vision problems are all caused by fatigue, but me not getting enough sleep! hummm? who knows!! didnt have them before surgery just after with neck/back muscle tension and base of the head pressure.
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980510_tn?1282014546
all he did was like press his fingers against my cevical spine, and then pressed into the spine in my back. he didnt rub,yank,or anything- So the eye thing and this whole nose thing are a completely a mystery to me....as to why. I wonder what brilliant advice i will get this time when i see my NL
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1287323_tn?1277083585
I did tell my NL yesterday and he made note of it on the info he is going to forward to the NS, but I will make sure to mention it to the NS too. Did you have them before surgery as well, and if so, did the surgery affect it at all? It's not too annoying yet, but it's random and kinda weird! lol
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1179332_tn?1297482590
Yes I had the flashes b4 surgery..it was just annoying the way that any light would be flashing in your eyes..lol..

I noticed right after surgery that it was actually a little worse for awhile which had me worried but I think now that was b/c there is alot of inflammation of your brain post op and I also had an allergic reaction to one of the meds which probably made it worse. The good news is that I haven't noticed it as much lately.....somedays if I have more headaches or am tired I notice it more. I am actually seeing an ophtha this Friday to determine what is causing the lasting vision issues (whether it be perm. damage or just something that needs more time to heal!)

A good idea is to have this all typed up in a list so you can just hand it over!! I may have told you this b4 but I tell everyone so I can't remember who I've told..

Carolyn
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1287323_tn?1277083585
Thank you for the advice about having a list....my only problem is that with my memory issues, I will probably forget to take the list!!!!! lol Seriously, though, I will been compiling a list of concerns and symptoms and will be sharing with the NS.
I'm glad to hear that you have had some relief with the flashing lights post-op, and I hope all goes well with the eye doc!
-Nicole
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1088046_tn?1272288996
Because my memory is pure crap anymore, I wanted to quickly post this, lest I forget how to describe it!
I've been having some vision problems,and the hardest time trying to figure out what is wrong, let alone describe it to anyone. Finally, I think I have it! It looks as if I have a semi transparent black cloth over my eyes. Like, you know if you have a piece of felt and you pull it until it's thin and see-through... I can see everything, but it's like there is a black haze over it all... and some areas are thicker "material" than others.
I really can't find a better way to describe it, I guess. I just know that this isn't how it used to be.

Am I alone in this hazed vision?
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1179332_tn?1297482590
Two things: I get that with the floaters...when I am in good light they are all over my vision and they all move together kind of like the are all attached by something..I'm not sure that is quite the same?

Second..I learned this in medical terminology...if it is like a veil has come down over your vision...that could mean you retina is detaching!!!! If that is the case, you need to see an optometrist ASAP as the faster you catch it, the better chance of repair!! Not trying to scare you but as soon as I read you post, that is what popped into my mind.

Carolyn
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1088046_tn?1272288996
wow! that does scare me a bit, especially after my last visit with my optometrist! i'm going to have to make an appointment with here right away, just to be sure. thanks, Carolyn!
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1179332_tn?1297482590
I'm glad, I think that is the right move! Please let me know how it goes!
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Avatar_f_tn
I was in a car accident in may,,,,when taked to ER by ambulance and CT was performed I was told that I have chiari malformation...had NO idea what that meant, I am slowly learning more and more, I have not had surgery bec I am 54 lived with it all my life, at least that it what I have been told. I have seen nuerosurgeon who basically says it is my call whether or not to have THE surgery, I am not sure if it will help or not.  I do know that I have been having terrible things going on with my sight since the accident, I cant even see to well to read anymore, dont know if that has anything to do with the Chiari malformation or not..sometimes everything will go blurry for at 5 mins at a time, and other times my eyes feel like they have sand in them...so any info about anything would help since it is all new to me.
Thanks for any advice
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620923_tn?1416285879

  HI and welcome to the Chiari forum.

Hi many with chiari never find out until a situation like urs occurs....they r in a MVA and have a MRI and bam they now know they have had something since birth.

BUT what many do not realize is bcuz they have had it from birth, many symptoms they r not aware of bcuz they do not see them as symptoms...we become accustomed to many of the symptoms and consider them "normal" and never report them...and some that may be a bit more intense we attribute to  other possibilities like we over did it, or coming down with the flu...and so on....the symptoms come and go, so it is hard to know to connect the dots.

And just bcuz u always had this does not mean that u do not need surgery...and just bcuz it was found doesn't mean u need it either....u do need to have more testing and an eval by a true chiari Dr to see how it may be affecting ur overall health. A MVA can trigger chiari to be more active and begin to grow faster.....depending on the width of the tonsils they can block CSF and cause a syrinx to form if u do not have one already....these syrinx's can impinge nerves  and if left untreated can cause perm nerve damage.

  As for ur vision, r u on ne meds?...Some meds can cause dry eyes...that can explain the blurry vision and the sandy grit....

U do need to find a chiari Dr that is well experienced with chiari to help guide u.

  We do have a list of Drs, compiled by the members so u still have to research all the drs to find the right one for u.The list is not a referral.

http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

     "selma"
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Avatar_f_tn
I have oscillopsia (jumpy vision) 24/7. It is very difficult to deal with. I am hanging onto the hope that someday, somehow things will get better. I'm 2 years post decompression surgery and 3 1/2 years with the Chiari.
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620923_tn?1416285879

  Hi....have u had a more recent MRI?

DId ur NS that did ur decompression say u had perm nerve damage?

  Just curious as to how u developed this symptom.

    "selma"
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Avatar_m_tn
Happened upon your forum in looking for help for my daughter.
She sees clearly only about 3 letters when reading, outside edges are blurry, she does have headaches and many of the symptoms listed in this forum.
Optometrist is trying to find contacts, she says touching her eye to put them in is painful and they do not improve her vision. She can see only with one eye and the other eye is the one trying to be corrected. Advice/Help?/Thoughts
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Avatar_f_tn
Does she have Chiari?  Has she had surgery?
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1903798_tn?1333908888
My favorite vision problem is when it looks foggy indoors...at least then I know that it is only me.  On Christmas I kept insisting my husband was burning something because the house was smokey .... Only I could see the smoke lol.
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1925822_tn?1333709217
:)) same here....i see smoke everywhere...till the point i get crazy i swear.
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Avatar_f_tn
Hi, I've had visual symptoms similar to many of yours for close to a year now, at least that's when I noticed them. I have afterimages, ghosting/double vision, floaters, sparkles (especially when I look at the sky or light background), snowy vision, and sometimes foggy/smoky vision. Also, stationary objects appear to be moving slightly, kind of like they're tilting? These symptoms seemingly appeared out of nowhere, and one at a time. The first one I noticed was the ghosting/double vision which can be made worse if I squint my eyes.

I do have headaches, but they don't last. They're more like random sharp pains in my head. I also have pain at the area of my neck just behind my right ear sometimes when I laugh or sneeze or strain in any way. I have pressure in my head, or my head and ears just feel "full", and I have terrible ringing in my ears as well. I haven't been to a doctor yet, and have no idea if this could be CM, but so far it's the only thing that sounds similar to what I'm experiencing besides HPPD for the visual symptoms, but I've never done drugs.

The pain I have is not severe, in fact it doesn't really bother me. What bothers me is the visual symptoms. I've been too scared to see a doctor in fear he would think I was crazy. Does it sound like CM?
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620923_tn?1416285879

  Hi and welcome to the Chiari forum.

It is possible that ur symptoms r chiari related, but there r many conditions with similar symptoms, so we all have to be tested to rule out ....other conditions r MS, lymes, lupus.....

The only way u r going to figure out if it is in fact Chiari or something else is go to the Dr and have the testing done.

  A brain MRI w/wo contrast and a cervical spine MRI is a good place to start...as well as some blood labs as low levels of vitamins and minerals is another thing that can affect how we feel and heal.

   "selma"
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First I'd like to say thank you for posting your stories, this is a great way to help each other. I was diagnosed with a 5mm chiari I Malf. 10 years ago. That MRI was studied by a NEURO-radiologist and at that time I was on a PPO, so I chose to use Doctors out of the network.  I was in my 20's.  I had only headaches as symptoms and one instance of facial paralysis. Extreme, and over 20 symptoms began just after a head injury a few years ago. I am just beginning to get the vision symptoms now. Dizziness with lights flashing, etc and I go for a field vision test next week. My HMO Doctors are so confused and have been passing me around for 4 years. Sadly, I cannot switch to PPO and the HMO circuit is very controlled. They find anything to blame it on in an effort to avoid the bottom line, which is the chiari, because they know the cost of surgery is so much. They even went as far as having a new brain  mri done which was read by a regular radiologist, as opposed to a neuro radiologist, and it said that I had cerebellar ectopia and not a chiari I malf. So in a nutshell, they re wrote my history somehow. Is that just simply a lack of education in the field? At this point it's pretty obvious that our health care would rather risk litigation than pay for what's needed. We pray that we can sell some things to afford to switch to PPO so that we can get honest Doctors who will take care of me. Good luck to you all, I know how crippling this disorder is.
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620923_tn?1416285879

  Hi and welcome to the Chiari forum.

What u r describing is what we call "the royal chiari run around" and it does not matter what type ins u have, many of us have had this happen and it was not bcuz of an HMO, and I am sure it is not helping u ne, it is not the only reason for this ...but much of it is a lack of knowledge of chiari and how it affects us, old info being taught in med schools and Drs not listening to patients and going by the old info and not reading up on the latest research in the field.

For this reason we say to find   a dr that is a true chiari specialist to get the best care, as they do their own research. Some will review ur MRI's for a nominal fee and give u an opinion....it may be worth the out of pocket expenses to do this, plus it may give u the ammo u need to get ur HMO to consider letting u go to an experienced NS.

   "selma"
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Hi Selma,
Thanks for your response it gave me a good laugh :). I would agree that there's nothing suspicious going on within my medical group, or  hmo, but only if I didn't already have another instance of dishonesty. A report specifically stated that I did not have bulged disks in my lumbar, and when I paid cash to have it re read outside of my insurance it came back with a total of 4 in the expected areas due to symptoms, pain and an injury to that area. Now most Dr's are pretty skilled in finding bulged disks, so I think I do have a problem with a dishonest med group, or hmo, whichever or both. That said, here we are with the chiari and the same issue. Coincidence? Hrrrm maybe but doubtful.  My peripheral tests did come back as the left eye significantly worse than the other in peripheral vision only. The right eye was almost perfect. The left arm is weak. The right is almost perfect. The left leg is weak, the right perfect. Left hand tingling and numbness in 3 fingers, sometimes in the right also. Dizziness, and now a record in severe headaches. 24 in 6 weeks! No more advil. It's taking advil and maxalt both to ease them. Almost passed out twice the past two days. Dr calls me today and says he's trying to get me back in to see the neuro but were waiting on authorizations.  Left eye is dry so dry when i sleep that I can't use it when I get up at night to go to restroom, which by the way happens about 5 times a night now. Ibs? Yep got that too. Had a colonoscopy and a cystoscopy to cover the colon and bladder both. Nothing found of course b/c they're probably affected by the chiari. Cervical mri, I paid cash to have it done when I did the brain mri. Says I have 2 bone spurs, spinal cord impingement, nerve impingement, 2 thecal sac tears, and mild csf flow blockage. Yet I await further help. My neuros english is horrible and he wants me to see him one more time so he can get me one of those drs outside of the hmo. I think I need to switch med groups. What else can I do? I am willing to pay anyone to RE read these Mri's but who's to say they even did the slices correctly to begin with? More time wasted, more pain, more damage. I feel horrible for those who've taken all the psych meds, they tried that with me also, but luckily for me my sister went through this and I learned from her how they operate and knew how to avoid that mess all together. I am stuck because how am I supposed to get to a chiari specialist when I'm only allowed to see Dr's in my medical groups network?
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620923_tn?1416285879

  Hi...it is hard to deal with I know....and I am so sorry u r having to deal with this as well as how u feel....

U can , with copies of ur MRI send them to chiari specialists for review...some charge a nominal fee...I am sure if u explain y  u want this, u will get the help u need as the specialists can write a letter to ur ins and explain what is going on.
  

If possible during the next open enrollment, if u can change to something else, for medical coverage I would...u may want to look into it now.

  
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I realize this an old post, but would still appreciate any feedback if anybody has a few minutes to read my profile(including pics of MRIs I posted). I'm currently in limbo waitng for a referral to McGirt/Cheng at Vanderbilt in Nashville, which is 4 hours away but considering I've been misdiagnosed for almost 20 years everywhere else I've gone to for help & just been dismissed as if I was making all of my symptoms & pain up(bp usually runs 80/50ish unless I'm having an "episode", then it's in a normal 120/80 range & doctors just think I'm making up everything. Is it possible to file a lawsuit for misdiagnosis? I'm terrified that some of my symptoms will end up being irreversible permanent nerve damage even with my symptoms being more frequent & severe since last May & nothing being said or noticed about what I saw when looked at them & found my problems. I  also have the groovy psychadelic vision thingy going on almost all day long(tesla coil is a good way to describe it -lightning bolt,traveling neon light, wavy water, then tunnel vision &blotchy splotchy like u just rubbed your eyes) Anyway, any comments would be greatly appreciated.

Shell
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I've been going back and forth through three diagnoses in the last four months... MS, IIH and Chiari (4mm)... I photoshopped some of what I see... does anyone have vision that looks like this?

http://www.flickr.com/photos/81238950@N03/7445231194/in/photostream

Lasts for about 30 seconds at a go.  Periphial vision nearly gone, inner vision nearly gone on left.

I have positive symptom response to diamox, but hate the side effects...

If anyone has anything like this, please let me know...
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620923_tn?1416285879

  Hi and welcome to the Chiari forum.

Many of us have floaters in our field of vision which will block certain areas....mine appeared like black spots no white like u have pic....

I also had depth perception issues, night driving issues, even what liked like water streaming down a window in my peripheral vision.

Some items like stacks of paper look like wavy movement like the heat coming off a hot summer road....very odd stuff....

Do u have a copy of ur MRI and the report?
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