Chiari eye pain

[Shela4310]

I am 1 yr post Chiari decompression and am worse than prior to the surgery. Umong other things I have intense eye pain in many forms, especially eye movement pain which prevents me from reading much. Too painful. Anyone else with this symptom??
Sheila

[selmaS]

  I totally hear what u r saying and by relax I meant to try and not cause more issues by getting too upset as this too can cause more pressure.Not that it is easy as u said only weeks not months....I do hear u, and can feel how stressed u are.

It seems the only Drs that Do understand this are true Chiari specialists...the others do not see how ALL the symptoms are inter related.

And like u I dealt with many symptoms on my own for yrs as not one Dr I saw understood what was going on or tried to in my opinion.

But u do need a Dr that will listen and take the appropriate steps to help u....and all I can suggest is use the list of Drs we compiled to research a few Drs and see which one is best for u....I know it all takes time, and things are moving fast for u in the wrong direction, but u can only move forward and try....

Wish I had more to offer.

[bonny7]

Thank you for your input Selma. I'd not mind red eye alone. What I can't relax about is a sudden loss of vision with that affected eye. It went from 100% to about 40% now. Over 2 weeks not months or years! And as of now it has been 4 weeks without improvement. Also I have pulse vision now with that eye and pain that comes and goes and  is very bad when it comes, also it always hurt to look at something close. With all that eye Dr don't see anything wrong with my eye from the side of the eye. So it is optic nerve or some other issue in my brain that affects vision. As I was told if I got paralyzed I could get emergent MRI in the hospital. Eye sight is a function of the brain too, as well as speech, cognitive function and so on...Important function. How that is not emergency. I think some Drs should take Chiari malformation in patients more seriously. Yes high blood pressure can cause stroke and brain damage but so can elevated intracranial pressure we deal with. Difference is there are pills to bring high blood pressure immediately back no normal (or safe) and there are no such pills for intracranial pressure so when we feel like head will explode all we can do wait and hope no part of the brain or spine will get damaged....hours and sometimes days! Any part of the brain can be affected. I am not exactly person to complain. All the years with Chiari I've deal with lots of pain as any of us without seeing Drs. I just dealt with it myself. Now, no, I can't relax, my eye is so bad it is hard to see good even with 2 eyes. I need to work, drive, read a lot...Not cool. Optic nerve damage also can be permanent if procrastinate about it and for that kind of blindness no glasses will work. Like now, no lenses make my vision better for that eye, it just blurs.

[selmaS]

  From what others have experienced with eye issues a reg eye Dr may be of little to no help....u will want to see a neuro optho.....

I know it is scary to wait.....I waited a little over a yr once I was DX'd but from my last drop attack it was more then a yr until I got a DX and another yr till I had surgery.....

Try to relax, 2 weeks is not that long....((hugs))

[bonny7]

Thank you again Selma for responding and useful infor. I have some update on my eye situation. I went to eye Dr and he said he sees nothing wrong at all with my eye while I have pain and blurred vision. He said I need MRI, neurologist and neurosurgeon to see me ASAP. I might have some blockage in my brain. He wrote up note I took to my physician. Now I need to wait about 2 weeks to get referral processed and finally get MRI. As I was explained You don't get emergency MRI unless you half paralyzed or have other severe noticeable handicap like can't move your arm or leg. Whatever. I hope I will be Ok these 2 weeks. I feel constant nausea and sudden crucial pains in my head as if I just had brain concussion. Good news is matter will be eventually taken care off. I just need to hang on there....It was careless of me not to have neurosurgeon who would monitor my condition and not to get MRI for over 6 years.

[selmaS]

We all have been told that only to find out later those Drs were wrong.....u deff need a true Chiari specialist to help u ....and a NL that knows all the related conditions to help rule those out as well.

It is typical testing to rule out Lymes, Lupus, and MS.....this will only force them to look at Chiari as the source.

Yes, some with Chiari have gotten disability, while some of us have not....it takes a few conditions to get one and it can take 2 yrs for it to go thru too.

I understand u can not take time from ur kids, but depending on how ur Chiari is affecting u and ur overall health u may have to take the time now.

U may want to look into the clinical trials...as I do not see med INS getting better netime soon....ugh

Or Drs learning that yes Chiari can and does affect us whether u expected to find it on a MRI or not,.,so an incidental find does not mean it is an incidental condition.....

[bonny7]

Thank you Salma, it is a good idea to start a new thread. See what you say make sense. People with Chiari are prone to auto immune conditions. So eye pain even though not directly caused by Chiari (can be rule out pinched optic nerve or minor brain blockage though?) still can be caused by conditions I could be prone due to Chiari. There could be few like you listed. Problem is find a Dr that could put it together. So far I heard only NO, CHIARI has nothing to deal with it. And they might look into Lupus and rheumatoid arthritis....anything but chiari and conditions that run along with it. I called my physician on Wednesday. Friday today still haven't got appointment with eye Dr. they treat it like a joke while I am going blind. NO, no surgery yet. I am trying to manage. I have 2 little kids and no time to spend on a surgery table. Also, Chiari specialists are far and in between and insurance I have covers only drs in my area and in my area there are no chiari specialists. what does average neurologist would say to my problems? WE ALL HAVE HEADACHE! Heard it before. Need to change insurance, need more money to do that. To have more money I need to be not so damn sick. Vicious circle! DO you know by any chance if Chiari people can ever get disability coverage? Or that's next to impossible? Didn't look in that yet. I try to tough up and live through pain and do best I can while I can...Don't see very bright horizons up ahead though.

[selmaS]

  Hi and welcome to the Chiari forum.

The member u r replying to has not posted since 2009, and may not longer be active here.

U may want to create a new thread so members know which person is asking for help.

Eye pain is associated with Chiari and a few related conditions like ICP.....EDS, and syringomyelia.

Those with Chiari are prone to auto immune conditions like RA, and Hashimoto's as well as connective tissue disorders like  EDS.

May I ask have u had surgery for ur Chiari? Or found which other related conditions u may have?

[bonny7]

Please respond if you can how your testing went. Did you figure out reason for eye pain? My eye pain comes right after I have bad headache. Main symptoms go away and eye pain come. I am early 30s. My chiari is not corrected. Eye pain came out of nowhere last February. In 3 days I lost 50% of sight in one eye! Optometrist diagnosed me with virus, gave some drops that make my eye worse. Ophthalmologist said I have Iritis. Why? He said, no reason. If pain comes back I might have Lupus or rheumatoid arthritis. Wow! On top of Chiari? He denied any connection to Chiari. but how much does he know about Chiari to deny it? Anyway steroid drops he gave me worked. But eye pain became regular ever since. And drops don't work any more. They somewhat keep things from getting ugly but don't resolve pain. when I try to look at something closer than stretched arm it hurts and when I move eye to sides. So we have Chiari, we have same eye problems, aren't there chances it is caused by Chiari? Or we have same conditions on top of Chiari? Saddest thing is we didn't cause all these health issues. We are born with it. People ruin their bodies by doing drugs, alcohol, smoking...So not fair. It is like we never were given chance to be healthy! My eye sight was 100% before this now I got to see it go or have pain any time I try to look at this world closer?...Sad. At the times when I am dizzy and sick, I could distract by reading. Now what.

[nichole685]

I had decompression surgery about 8 months ago and severe eye pain is one of my symptoms, although i did have this symptom before surgery as well...it does seem to have gotten worse since the surgery. I think i may be on the same boat as you...are you having any other symptoms? like back pain? intense pressure like headaches?

I have hydrochepalos.. my NS is sure that there is somthing else going on other that chiari.

I would recommend having further testing done as you may have more issues than just chiari...that is what i am doing. There are many realated disorders than can come along with chiari.

[selmaS]

Hi and welcome to the Chiari forum.

May we ask when u had ur last post op MRI?

I wonder if u might have related issues, which can be expected. There r several members with eye pain.

Do u know if u have other chiari related conditions? like tethered cord, syrinx, DDD, spinal stinosis, Ehlers-Danlos, or hydrochepalos?

Has ur NS said what he/she feels is going on?

"selma"