Chiari Online Support Group

Eye Troubles

Anyone out there having eye problems. This has been probably the hardest part of all this stuff for me, a lot of times it feels like I can’t focus on things. Also I’m now ridiculously sensitive to light, it’s gotten so bad that even going outside on a normal day is hard on me. To make matters worse I had an endoscopic ventriculostomy which gave me vertical double vision. Im wearing glasses now which helps me actually see w/ the double vision, but it’s not helping with the inability to focus or light sensitivity. I haven’t had the decompression yet and was wonderig if any of you guys had experience w/ eye problems before decompression, and if it helped afterwards.

Hi!.. im afraid I cant answer your question as I havent had surgery yet either.

But I totally get the whole not being able to focus thing. I get really bad distortion of vision… but not double vision.

Im interested to hear too, if anybody had these symptoms go away after surgery.

Good luck!

I did not have eye problems before my surgery. I'm now 35 days Post-Op, and have been having some eye discomfort/aches. My eyes are sensitive to bright light--especially computer screen smartphone. I turned down the brightness on these devices which really helped. Also, if I spend too much time on the computer my eyes start to ache. As for going outside, my eyes has always been sensitive to light in which I have to wear sun glasses or prescription glasses. But since surgery my eyes are a bit more sensitive to light. Cold compress has helped ease the pain. Hopefully, the pain will eventually go away.

Many Chiarians develop eye problems pre decompression surgery. I have a bent optic nerve from the CSF Blockage and Pressure and have major vision issues in one eye. I also had to wear a stopper in the tear duct of my right eye after my Microvascular Decompression Surgery for Geniculate Neuralgia, where I stopped producing the normal amount of tears. It did regenerate after a couple of years. Chiari or Cranial Nerve Disorders definitely affect vision and many medications, allergies & headaches make things worse. I wear prism glasses when I read or work on the computer. We also have two Members that I am friends with that has had their vision affected so drastically they have had to face not being able to drive or work again. I know this is very scary. I think one of the gentlemen I was speaking of may have had the same surgery and had double vision issues. I will check with his wife and see if I can put you in touch with him.

I was verys sensitive to light pre op post op I was great but now the sensitivity is coming back

I live with very similar situations. My eyes and vision has gotten increasingly worse over the past few years. I get a lot of double vision, blurry vision, headaches because of, and sensitive to lights etc. I have not had the surgery and don't know if I will. I have been told that I would be a good candidate for laser eye surgery but not sure about that either. So hard to know what to do.

I wear glasses to see the TV at times, when driving etc., but to wear them when walking is hard and makes me even more unsteady. So strange. Please keep us updated. Would like to see how some one else's situation fairs and may help me decide what to do.

Maria

I have been decompressed in 2010 and tethered cord release 3 wks ago. I agree with Tracy said on all points. I hear a lot of us getting the prism glasses and wearing a stopper in the tear duct. That was suggested by my eye Dr. I actually see him tomorrow. This TC release should have also reduced my pressure. I also have intracranial hypertension and Ehlers Danlos…I don’t know if you have been checked for that as well. But I’m sure you have been told to be sure you don’t have a laminectomy if you have EDS or you will have CranioCervical instabilities like me and others…I also use Restasis for eyes and preservative free eye drops from Theratears gel for night or severe day. I too have to look away from computer and lights and noise. Photophoboa is what they call it…Stay away from your triggers as much as possible!

I have trouble focusing too and I'm also very sensitive to the light. I always just keep lamps on in the house and not too many ceiling lights. I have glasses but they always cause a headache after about an hour. (I feel like they are are pinching my brain behind my ears, I have to keep getting them adjusted)

I have not had surgery but I have terrible issues with my eyes. I wear contacts and as the day progresses I find I need 'readers' as well. I can't tolerate certain lights yet struggle if there is not adequate light. My vision is blurry most of the day and worse when a headache is coming as I have left eye blindness. I guess I have just learned to deal with the frustration...and it is frustrating.

Jayque, I'm sorry to hear you're having these issues too :(

My light sensitivity and distortion with light (computer screens, tv, etc) seemed to get better for a few weeks immediately following my decompression, but now I can't tell that it's any better (I'm 4 months post-op). Some days are worse than others, and the only thing I can pinpoint that makes it worse is exercise...this is quite frustrating as I'm dying to get back to walking a few miles a day and was hoping to start running too. I'm not sure if anyone else notices it's worse for a few days following intense exercise??

My inability to focus has definitely gotten better post-operatively. I used to call it "I've got the stares!" because I'd find myself just staring hard at something but not focused, and it was almost like a "blip" in time where I'd be staring and I had to force myself to drag my eyes away from something and really work hard on focusing on something else.

Does anyone know, with all of our issues with light sensitivity and distortion, would seeing a retina specialist be of use??

Jayque, the vision issues are what prompted me to seek help last year; then all the other pieces started being put together and Chiari was diagnosed. It's frustrating! and this board is full of people who can sympathize with you and help give you support :)

Wishing you all the best!

~Lindola~

I am 78. Before my surgery in 2000 I had a lot of pain in my hips. A few years ago I started getting one or two shots from an MD pain specialist. Those shots helped a lot. My eyes have been sensitive to daytime sunlight as far back as I can remember.

The Veterans Hospital is my main doctor. I use the walker they gave me. Recently I have been needing the electric carts at Safeway, Kroeger,. Walmart Right now I can barely walk because of knee pain. I wonder if the pain is from Chiari?

Bob Fay

Dewey, Az

Hi Jayque,

Prior to first noticing my ACM symptoms, after a serious injury over twenty years ago, I had perfect eyesight and never had any problems with vision. But after the injury, decrease in reading vision, occasional blurred and double vision. The doctors at the time said it was most likely all the medication and when I was healed and off the drugs it should get better. Well three or fours years later, no more meds, still vision problems, with the strength of the readers increasing every year. A couple of years later ACM surgery, still no change with the vision issues. Now fifteen years after surgery those readers are at + 400, regular glasses just to see TV, with their rx increasing every couple of years too. And still having issues with double and blurred vision too. Now in addition to that, the last few years I have been, seeing spots, flashes and have been having short term blindness (20 - 30 seconds at a time). Good thing I don't Drive ! Funny thing, all along I have never had a problem with light sensitivity, like so many other Chiarian's.

Good Luck with yours,

GrandPa Jack

Emmaline, thanks for sharing your story; it give me hope this to shell pass...

Emmaline said:

I had eye/vision issues before surgery. Sometimes the TV or computer screen were too bright to look at. I had more floaters, and saw dots of color. One day they would be blue and sometimes yellow...Other days I had what seemed like fireflies buzzing around me. Focusing was always a problem, some days I could see out of my glasses, other days they were worthless.

Most of this went away after surgery. I'm almost 11 mos post op and all of it got better. I still have changeable vision, but not to the degree as before surgery. It all progressed after surgery, but slowly. Everything is much more stable now. =)

I also experience visual disturbances. I am pre-surgery myself. I not only experience blurred/double vision, I go blind for various amounts of time... This is especially worrisome, since I am a single mother of a three year old. If anyone has suggestions, I would also love to hear them.

My eyes are really painful all the time, as if I have permanent eye strain. It's very painful to look up or to the side hard. It's like a stabbing burning ache, in addition to the pain I always have.

I saw a retina specialist and he could not find much wrong with my eyes even though I have all of the symptoms you guys have. He has referred me to a neuro ophthalmologist who has experience with chiari. As with most of our issues, it’s important to find someone who “gets it”. I have now seen the neuro ophthalmologist yet so I’m not sure what his recommendations will be.

Please let us know when you talk to the neuro ophthalmologist

Violet,

It's painful for me too when looking to the side hard -- especially driving and looking in your blind spot.

Violet said:

My eyes are really painful all the time, as if I have permanent eye strain. It's very painful to look up or to the side hard. It's like a stabbing burning ache, in addition to the pain I always have.

I had this too. I felt like my vision was foggy…but that’s not really a good way of describing it. My vision just wasn’t right. I had a hard time focusing and felt like my sight would kinda zone out on me. After surgery it got better for a few months. But it is returning now that I’m 7 months post op.

I had the decompression and I haven’t had any improvement on my eyes yet but he said sometimes it can take 18 months to 2 years to really notice a difference.