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1268921 tn?1288919056

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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620923 tn?1452915648
COMMUNITY LEADER

  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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Avatar universal
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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Avatar universal
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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620923 tn?1452915648
COMMUNITY LEADER

  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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Avatar universal
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?
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  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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Avatar universal
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.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  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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Avatar universal
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?
Helpful - 0
1925822 tn?1333705617
:)) same here....i see smoke everywhere...till the point i get crazy i swear.
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1903798 tn?1333905288
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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Avatar universal
Does she have Chiari?  Has she had surgery?
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Avatar universal
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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620923 tn?1452915648
COMMUNITY LEADER

  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"
Helpful - 0
Avatar universal
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?1452915648
COMMUNITY LEADER

  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 universal
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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1179332 tn?1297478990
I'm glad, I think that is the right move! Please let me know how it goes!
Helpful - 0
1088046 tn?1272285396
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?1297478990
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?1272285396
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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1287323 tn?1277079985
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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1179332 tn?1297478990
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?1277079985
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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