New with chiari 1 terrible vision issues, does anything fix vision?

Hello I am Jenn, new to the group. searching online I came across it and joined. this is all very new to me. 3 years ago I lost sight in my right eye for about five days, my mri didn’t show anything and my dr. kept expecting ms. I started to have fuzzy vision again the 12th of last month, In the opposite eye and the next day it was horribly blurry. I am a sub. rural carrier at the post office and have been at the same office for 9 years, both times this has happened it has caused me missed time from work since I can’t see to drive. this time with updated mri machines they found a chiari 1 malformation. I have a neurologist visit tomorrow and am not only very nervous but I don’t know very much about this condition. I am still not able to drive safely and am wondering what can I expect from this…can they give you anything to fix vision issues? I’ve always had 20/20 vision but it’s horrible when this happens. I’m so worried I will lose my job over the vision issues being permanent! have any of you had vision problems last this long? what fixed your vision? I have many other awful symptoms but this one is what I’m most concerned with as it keeps me from my driving job.

Hi Jenn - I too have vision issues, but mine just recently started. I had decompression surgery back in Dec 2015. About 2 months ago, I started experiencing what I will call “double vision” and a lot of sensitivity to sun light. My neurologist has ordered a new MRI which I am having done later next week. I’ve also been to see an ophthalmologist, and she is having me try using a stick on “prism” on my glasses to see if that helps (if it does, I will have a new set of glasses made). Any kind of vision problem is scary, especially when it impairs your ability to drive. I am still able to drive, but I limit myself as to how far I will go, just in case. I hope you get answers to your vision problems soon.

HI Suziesnyder :slight_smile: thank you for your reply. this is all so new to me. so of course I’m not sure what to expect and pretty stressed out. I saw a neurologist for the first time yesterday. He said that he believes all of my symptoms are related to the chiari except he thinks that the length of time of the vision problems suggests something else may be causing that. he is sending me in for a mri of optics only this time and a lumbar puncture. he went over the chiari a bit with me from my mri and said something like it’s not great but not terrible lol he explained that he didn’t think that we needed to worry about surgery yet. the thing that confused me is that he didn’t fully explain the measurements…when he was showing me the tonsils it was a 17mm measurement and then on the other side they had measured something with 9mm so I have no idea why two measurements lol you have given me some hope that the sight problems might have a resolution :slight_smile: I also have light sensitivity and its extremely blurry. I’ve been so worried about driving and haven’t in almost two months. the eye sight just doesn’t seem to be improving at all, I work for the post office as a letter carrier, so between my commute to work and driving route it’s about 8 to 10 hours of driving a day. I’ve been there for 9 years and rarely ever miss work…so it’s been pretty stressful. did the decompression surgery help with other symptoms you were experiencing?

My main symptoms (before surgery) were pressure headaches, vertigo, pain in my neck/shoulders, and tingling in my left arm/hand. No vision issues at all (other than I’m fairly nearsighted). Thankfully, all of those are gone after surgery. I did experience nystagmus for a few weeks after my surgery, but that eventually corrected itself (but it was awful - I couldn’t see well enough to read or even watch TV). But this new vision thing for me is concerning - maybe the MRI I’m having next week will provide answers. I hope the same for you when you have your MRI. :slight_smile:

On the measurement of the tonsils, I don’t know why they gave you 2 measurements. Mine was 19mm. All I know is that my symptoms were getting progressively worse, I saw 2 different neurosurgeons, and both recommended surgery for me. Hoping your vision issues can be corrected without surgery.

OH wow suziesnyder Thank you for sharing your story with me, it really is helpful to hear that I’m not completely nuts and that we all go through these strange things that don’t seem to make any sense. I am so sorry that you had to go through all of that! I’m so glad that your surgery helped some things though, and I hope that your mri will help find out the cause of your vision issues too. It really is frustrating having vision issues for sure. it really is limiting! I will be thinking of you and sending out prayers as you wait for them to find the cause! :slight_smile:

I had blurriness and double vision before surgery. I tried vision therapy before being diagnosed and just getting worse with my vision. She discontinued therapy and said I needed further medical attention so surgery to help my brain it eventually was after diagnosis.

After surgery, I spent a long time working on improving my vision with daily exercises under the guidance of an optometrist but more importantly a tremendously skilled vision therapist. I am very pleased with my progress though still find that my vision lags at the end of the day when I am fatigued.

I would like to mention two things. One is that my reading, experience, and talking with the vision folk indicates that a prism in eyeglasses does not address the underlying visual processing problems in the brain itself. An eye glass prism is just a prop for the eye and requires increasing levels of prism as the eye and brain accommodate to the prism over time. Exercises to improve the brain’s visual processing are required to actually improve the problem.

Secondly, I wish you well in navigating work requirements combined with a disability. Seeking counsel may be a consideration to best proceed with dealing with your workplace. It is always discouraging to lose a job.

Good luck in your Chiari journey

I was intrigued to read this post because last month I experience diplopia (double vision) and nystagmus for 3 weeks. I started by going to the optometrist, who referred me to my physician as well as a neuro opthamologist. My physician ordered new MRI since my last one was done in 2016 (I had decompression surgery in early 2014 for a 17mm herniation) . Neuro ophthamologist examined me and by this time my right eye was not tracking correctly and looked physically higher and inward compared to my left eye (looked like a lazy eye). She said it was a mid brain problem and not a muscular problem. She ordered a plethora of labs also to check for conditions that could cause double vision symptoms from Lyme disease to auto immune diseases. The MRI and all the labwork came back negative which was a huge relief. Ultimately the Neuro said it must be due to a virus and started me on a six day steroid pack. I started improving in the first couple days and eventually gained my binocular vision back. I just had my annual eye exam this Monday and everything was normal - no nystagmus. Part of me thinks this could have been from Chiari rather than a virus but I guess I will not know for sure unless it recurrs - which I pray it never does.

I forgot to mention, I feel your pain when it comes to worrying about the future of your work when vision is impaired. Many thoughts went through my mind during those three weeks of vision problems. How am I going to drive to work? Work effectively? Do I need to consider disability? I hope your vision issues resolve - and with a 17mm maybe surgery could improve some of your symptoms. I definitely am better off since my decompression surgery.

Just a quick note about the two measurements:
You have a right tonsil and left tonsil. Many people have the same measurement for both, but I had 12mm on the right and 8 mm on the left, which I’m sure is the reason why you were given two measurements as well.

Hi Jenn. My symptoms sound about the same- loss of vision, blurry vision. I get double vision, shadows, auras, it’s all a headache (literally). I saw my eye doctor who then referred me to a neuro optometrist. What ended up happening was my spinal fluid was backed up which caused my optic nerves to swell. This caused retinal damage, hence the vision problems. They were able to find a pseudotumor cerebri and chiari malformation. My neuro optometrist suggested the prism glasses to help correct the double vision, but she said it won’t permanently correct anything. Apparently once the damage is done, it’s done, and the doctors just want to keep it from getting worse. The good news is if your issue was like mine once you get a lumbar puncture and start working on keeping your spinal fluid from elevating again your symptoms should get a little better. Everyone is different, so I hope maybe this helps ease some of your nervousness.

HI Gabby thank you for sharing your story. this has been quite a strange experience for me…as I’m sure it is for all of us! I have been back to the eye doc and he says that there is nothing physically wrong with my eye that it has to be something neurological and he doesn’t think he can do anything to correct it. I had to go in for a Lumbar puncture 3 days ago and they said that the results will take awhile some will be done in a few weeks though. I expected to have a headache following the lumbar puncture but I haven’t as of yet, although my numbness is so crazy I probably wouldn’t feel it if I did. lol I have felt like someone just dunked my entire upper body into a tub of vapor rub for the last two days. crazy sensation. but today it is a little better. I had electric type shocks going from my hip to my foot on the left side and that is still there if I am standing for lengthy amounts of time. but overall I feel a little bit better today. Do you work any longer? I have always been a hard worker and this experience has thrown me for a terrible loop. at first with the vision I knew I couldn’t safely drive and I’m a mail carrier so I haven’t been able to work, amazing how I thought that once the vision was fixed I’d be just fine to go back. but now I’m really wondering if it will be possible at all, since it seems like pain and dizzy and everything else just bombards me as well and I can’t imagine doing the job I’ve done for 9 years, feeling like this. it’s such a strange thing to think you are ok but something is off for most of your life…to having your body just completely have a mind of it’s own all of a sudden. lol I’m sure we all feel like that! Im so sorry to hear about your vision issues too. and even with having surgery. :frowning:

Thank you for helping me to understand that. I was pretty confused and the neurologist didn’t really explain. mine was 9mm and 17mm. which he said was not great but not terrible lol. I dont think he realizes that the symptoms would make it terrible considering I don’t feel normal by any means and I am not even sure I could return and do they work I’ve done for 9 years even if the vision problems were corrected. this has been one crazy experience for sure. as I am sure it has been for all of us.

thank you for your reply. wow it sounds like we all deal with such crazy issues with vision. mine is still no where near a comfortable level where I believe I could do My job. I saw the eye doc again and he says nothing he can do as it is for sure neurological and he sees nothing wrong with the eye itself. I had the lumbar puncture done three days ago and now my nerves are going nuts! numbness vapor rub feeling everywhere and electric shock pain. it’s so weird. it just seems like everything kinda goes haywire at the same time. :confused: I’ll have to look up what prism glasses are. I wonder if that would help a little bit. I was told that the lumbar puncture results would be a ways out …they said some would be back sooner than others. so I guess it’s another wait and see situation lol

Just a note, I saw 5 optometrists while complaining of vision problems. They all said that there was nothing wrong with my eyes. I did see someone who got me to buy a useless pair of $500 glasses. There is a point where you get a little desperate and will listen to people even when they are not offering any true help. Take care and watch the pocket book!

Optometrists are not necessarily trained in how the eyes are working together nor how the vision centers in the brain are processing incoming data… just if you need glasses. They are kind of like hearing aid technicians. If processing vision is the problem they do not have the tools to assess nor to treat. Hope that you can find health care professionals to help, truly help.

I do find that my vision is marvelous and my eyes look good in pictures again. I am a little vain when it comes to capturing my wandering eyes on film. I did find it jarring to see my eyes all different from what they used to look like.

In regards to my profession, I am working very minimally for myself as I can set my own hours and scheduling. Cognitive, in terms of reasoning and application, I am fine. I just find that my brain gets incredibly tired after any sort of a cognitive workout.

With driving, I only drive in town when it is absolutely necessary. Otherwise, the fatigue cost is not worth the gain. I still have a valid driver’s license and am well able to pass any requirements. I just know that it is not for me anymore. That is me. I see on this site that there is a great variance with what people can do after their surgery.

Carry on with your investigation

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Those measurements seem significant to me, especially if it is cutting off your CSF flow. I completely understand the wondering about continuing to work. I question that on a weekly, sometimes daily basis myself, but money wise with medical bills and insurance, I try to keep pushing myself. I continually have vision problems as well. I think a huge part of Chiari is that our brains process all kinds of things differently than the typical person, causing various issues throughout the body. Hang in there and know you are not alone!