# Vision problems **URL:** \ **Category:** General\ **Created:** [March 19, 2014, 7:21pm UTC](https://forum.chiarisupport.org/t/vision-problems/4820 "2014-03-19T19:21:19Z")\ **Posts on this page:** 20\ **Page:** 1
**Author:** ![joker12090](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.chiarisupport.org/joker12090/32/2550_2.png) [@joker12090](https://forum.chiarisupport.org/u/joker12090)\ **Post date:** [March 19, 2014, 7:21pm UTC](https://forum.chiarisupport.org/t/vision-problems/4820/1 "2014-03-19T19:21:19Z")
Hello again everyone, it has been a while since I have posted. I have been extremely stressed and depressed, and just haven't had the initiative to post lately. As some of you know I suffer from CM1 and more recently Syringomyelia. I am wondering if anyone who has these conditions have had vision problems? Its my left eye (again) but now instead of pain I have a double vision thing going on. With my right eye closed I can see fine. Same with my opposite eye. When I look and try to focus though I have double vision, but strangely enough only when I look to the left. I went to an eye doctor about a month or so ago, and he said my eyes were fine. That was after I was experiencing the pain in my left eye. All of my Syringomyelia problems affect my left side also. I have no feeling from my head to my hips on my left, and recently my left knee has been acting up out of no where. Has anyone had these problems? What should I do? I feel like if I go back to the eye doctor they will just tell me I am fine again like most of the other doctors I have seen for my CM up until I got diagnosed with Syringo too. Thanks for any help or advice everyone! ---
**Author:** ![Anglyn](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.chiarisupport.org/anglyn/32/676_2.png) [@Anglyn](https://forum.chiarisupport.org/u/Anglyn)\ **Post date:** [March 19, 2014, 11:43pm UTC](https://forum.chiarisupport.org/t/vision-problems/4820/2 "2014-03-19T23:43:25Z")
Try to get a refer to a neuro ophthalmologist. They should have more insight into your issues than a regular eye doctor. ---
**Author:** ![AnaS](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.chiarisupport.org/anas/32/2398_2.png) [@AnaS](https://forum.chiarisupport.org/u/AnaS)\ **Post date:** [March 19, 2014, 11:56pm UTC](https://forum.chiarisupport.org/t/vision-problems/4820/3 "2014-03-19T23:56:50Z")
I agree with Anglyn, get an eye specialist to evaluate you. A regular ophthalmologist won’t be able to detect or run exams a neuro ophthalmologist would. ---
**Author:** ![Dawn\_R](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.chiarisupport.org/dawn_r/32/507_2.png) [@Dawn\_R](https://forum.chiarisupport.org/u/Dawn_R)\ **Post date:** [March 19, 2014, 11:57pm UTC](https://forum.chiarisupport.org/t/vision-problems/4820/4 "2014-03-19T23:57:56Z")
Hello! I am sorry that you have been down. Something that we all can relate to, I am sure. I also have nystagmus and vertigo (both before and after decompression) Mine is also when looking left. Not sure why that is. Like Anglyn said...see a specialist. There is nothing to be done for mine. I no longer wear contacts because my eyes twist and move so much that the lenses are never settled. Best of luck. ---
**Author:** ![kittykat1](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.chiarisupport.org/kittykat1/32/2518_2.png) [@kittykat1](https://forum.chiarisupport.org/u/kittykat1)\ **Post date:** [March 20, 2014, 1:19am UTC](https://forum.chiarisupport.org/t/vision-problems/4820/5 "2014-03-20T01:19:01Z")
I have never heard of a neuro ophthalmologist maybe that's who I need to see about my nystagmus and headaches, since the neurosurgeon I saw didn't really help. Was even in the hospital and got no help. Still having issues. ---
**Author:** ![Soccer\_Mom](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.chiarisupport.org/soccer_mom/32/1621_2.png) [@Soccer\_Mom](https://forum.chiarisupport.org/u/Soccer_Mom)\ **Post date:** [March 20, 2014, 1:26am UTC](https://forum.chiarisupport.org/t/vision-problems/4820/6 "2014-03-20T01:26:16Z")
My mother in law’s eye doctor said I need to have the pressure behind my eyes checked. He says he has seen many Chiari patients with this issue. ---
**Author:** ![AnaS](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.chiarisupport.org/anas/32/2398_2.png) [@AnaS](https://forum.chiarisupport.org/u/AnaS)\ **Post date:** [March 20, 2014, 1:31am UTC](https://forum.chiarisupport.org/t/vision-problems/4820/7 "2014-03-20T01:31:31Z")
Yes, the neuro-opthamologist specializes in visual problems that are related to the nervous system. As mentioned above a neurologist can refer you to this specialist. ---
**Author:** ![kittykat1](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.chiarisupport.org/kittykat1/32/2518_2.png) [@kittykat1](https://forum.chiarisupport.org/u/kittykat1)\ **Post date:** [March 20, 2014, 1:36am UTC](https://forum.chiarisupport.org/t/vision-problems/4820/8 "2014-03-20T01:36:11Z")
Interesting Soccer Mom my eye doctor did not seem a bit worried about it but i still am. AnaS I don't see, or haven't seen a neurologist about these issues I am having. I don't know of one either. ---
**Author:** ![sueperpa](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.chiarisupport.org/sueperpa/32/2515_2.png) [@sueperpa](https://forum.chiarisupport.org/u/sueperpa)\ **Post date:** [March 20, 2014, 2:28am UTC](https://forum.chiarisupport.org/t/vision-problems/4820/9 "2014-03-20T02:28:33Z")
I had double vision prior to my chiari surgery, it is due to nerve compression. Once I had my surgery those symptoms resolved. ---
**Author:** ![AnaS](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.chiarisupport.org/anas/32/2398_2.png) [@AnaS](https://forum.chiarisupport.org/u/AnaS)\ **Post date:** [March 20, 2014, 3:01am UTC](https://forum.chiarisupport.org/t/vision-problems/4820/10 "2014-03-20T03:01:51Z")
Kittykat, coincidentally I went to my first visit to the neurologist since my decompression last year. My neurosurgeon gave me the clear, but did advise me to do follow ups with a neurologist every 6 months. Maybe you can call your neurosurgeon and ask for a referral to see a neurologist near you. Once you see him, let him know about your vision issues and ask to see a neuro ophthalmologist. I hope I have made some sense and that I was of any help to you. I’m new to this whole Chiari thing and as much as I dislike it I do appreciate coming to a site where I can relate to others. ---
**Author:** ![kittykat1](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.chiarisupport.org/kittykat1/32/2518_2.png) [@kittykat1](https://forum.chiarisupport.org/u/kittykat1)\ **Post date:** [March 20, 2014, 3:09am UTC](https://forum.chiarisupport.org/t/vision-problems/4820/11 "2014-03-20T03:09:16Z")
Thank you AnaS, I am new to all of this as well. I never even heard of Chiari until I joined a face book group, related to Spina Bifida. AnaS said: > Kittykat, coincidentally I went to my first visit to the neurologist since my decompression last year. My neurosurgeon gave me the clear, but did advise me to do follow ups with a neurologist every 6 months. Maybe you can call your neurosurgeon and ask for a referral to see a neurologist near you. Once you see him, let him know about your vision issues and ask to see a neuro ophthalmologist. I hope I have made some sense and that I was of any help to you. I'm new to this whole Chiari thing and as much as I dislike it I do appreciate coming to a site where I can relate to others. ---
**Author:** ![Jozy](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.chiarisupport.org/jozy/32/2087_2.png) [@Jozy](https://forum.chiarisupport.org/u/Jozy)\ **Post date:** [March 20, 2014, 3:31am UTC](https://forum.chiarisupport.org/t/vision-problems/4820/12 "2014-03-20T03:31:07Z")
Are you considering decompression surgery especially with your symptoms? My eyes have been funky too. I ended up getting the bi-focal contacts. Wow, they work great. They adjust for far & near. My eye dr was familiar with Chiari. All looked good with the exception of some blurred vision. All the best to you. ---
**Author:** ![mariarich37](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.chiarisupport.org/mariarich37/32/329_2.png) [@mariarich37](https://forum.chiarisupport.org/u/mariarich37)\ **Post date:** [March 20, 2014, 3:31am UTC](https://forum.chiarisupport.org/t/vision-problems/4820/13 "2014-03-20T03:31:22Z")
Hey, I too deal with bad eye problems, but I also have a large cyst on the back of my brain. I am currently having double vision where I have to close one eye a lot to see straight. My eyes hurt, get blurry and dry. I have a Chiari Malformation, along with a very large cyst on the back of the brain known as a Chiari Malformation. All my problems keep surmounting, and especially the problems with my eyes, especially with my right eye. Now, to add to the problems of double vision, neither one of my eyes dialates when they're supposed to. The pupils stay pretty small, only dialating very minimally. Anyways, has anyone else ever experienced any of these issues and what did you have to do or have done to correct them? I am expecting to hear that I'Il need another cyst fenestration....that the fluid just has really built again. Any info anyone can share would just be so welcomed. Thanks. Maria ---
**Author:** ![flerrie](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.chiarisupport.org/flerrie/32/2742_2.png) [@flerrie](https://forum.chiarisupport.org/u/flerrie)\ **Post date:** [March 20, 2014, 7:29am UTC](https://forum.chiarisupport.org/t/vision-problems/4820/14 "2014-03-20T07:29:43Z")
Hi all, I too have ACM1. My eyes are always an issue. My optometrist has huge patience with me to fine tune contact lenses. I wear a single sight toric lense in right eye, but varifocal in left. We use both eyes to see far, but left eye is main reading eye with some support from right. I also battle with shadows and blurred reading so it is very important to fine tune it as much as possible with lenses. Have been on treatment for dry eye. Eyes do get tired and sore at times.The trick is to be patient and find an optometrist that understands and is willing to support you. Over a number of weeks try new test lenses weekly, fine tuning them trying new ones as you go untill you find the combination that gives you the least shadows and maximum clear vision. We do this yearly with my eyes so I have the best vision possible. Make sure you use suitable eye health vitamins and omega 3 daily to help with the eye dryness. I saw a neuro ophthalmologist recently and this was his prescription. Also cortisone drops to promote fast healing for a few weeks. We all have to work at keeping our sense of humor and fight against depression. I was hospitalized for 18 days due to depression. Now with the slightest negative thought I make a choice and effort to ward it off. It helps. Ultimately I trust God to carry me through and strengthen me. Hang in, look up and keep smiling. ---
**Author:** ![Cait\_Vaughan](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.chiarisupport.org/cait_vaughan/32/971_2.png) [@Cait\_Vaughan](https://forum.chiarisupport.org/u/Cait_Vaughan)\ **Post date:** [March 20, 2014, 8:46am UTC](https://forum.chiarisupport.org/t/vision-problems/4820/15 "2014-03-20T08:46:15Z")
Hi Anglyn, Our daughter has similar symptoms as you describe. But no amount of complaining or discussing this amounted to anything. That is partially due to the fact that Aoife had absolutely no symptoms of Chiari or any other neurological symptoms until she had an electro static shock which , it appears, seems to have triggered a whole chain of events. One of which was two days after the shock she felt as if her right eye was being gouged out with a knife. The pain was so bad that she felt she had to push her eye in with the palm of her hand to keep it in the socket. All other symptoms on her right side. When we did go to an eye specialist(two years later) , she immediately diagnosed a number of areas in her right eye which showed a marked difference to her left eye and she now has to wear glasses. She has spasm which affect her groin, arm and legs, all on the right side. Her hearing on the right side, though not impaired has ringing and other unknown noises that impact it. Weakness all down her right side. Ask her to grip my hand using her right hand and the difference between it and her left hand is very obvious. That is all of the bad side of things.....We have been seen by three neurosurgeons,(two of whom, would lead you to believe that all symptoms were in her head, so to speak!!! Had a decompression and syrinx fix, but the symptoms continued. Three years later and we have finally and hopefully been seen by a Neuropsychologist who ,we hope, will make difference. He is starting all over again from scratch and examining all of her symptoms. She will have a multi disciplinary team which will include the Neurosurgeon, Neuropsychologist, Neurophysiology, a pain management specialist and a number of other people to deal with her very complex issues. We are only at the very beginning of this part of the journey and I hope to God that our faith in this team will prove right as we have been down this road before. I guess, that the complexity here is that the electrostatic shock that she received was not considered a factor , or, that nerve damage may have occurred from this, but at least it feels like this is going to be followed through in the coming months. I know that you will feel like crying, giving up on the medical profession , that nobody understands, but believe me, anybody who is on this brilliant , helpful, truthful and with an amazing array of people inputting their feelings, discoveries, medical examinations and incorrect diagnosis, will tell you that you keep going back to you doctor until you get satisfaction. Also, that we all believe and truly understand where you are coming from. ---
**Author:** ![Jozy](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.chiarisupport.org/jozy/32/2087_2.png) [@Jozy](https://forum.chiarisupport.org/u/Jozy)\ **Post date:** [March 20, 2014, 1:06pm UTC](https://forum.chiarisupport.org/t/vision-problems/4820/16 "2014-03-20T13:06:51Z")
Flerrie - that was inspiring! God bless you! ---
**Author:** ![Shananne](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.chiarisupport.org/shananne/32/332_2.png) [@Shananne](https://forum.chiarisupport.org/u/Shananne)\ **Post date:** [March 20, 2014, 2:24pm UTC](https://forum.chiarisupport.org/t/vision-problems/4820/17 "2014-03-20T14:24:58Z")
Are you having issues with your vision? Here are 2 informative sites to read and take with you to a Neuro Ophthalmologist visit. [http://www.ihrfoundation.org/intracranial/hypertension/more\_info/30/](http://www.ihrfoundation.org/intracranial/hypertension/more_info/30/) [http://ednf.org/sites/default/files/MRGOphthalmologyS.pdf](http://ednf.org/sites/default/files/MRGOphthalmologyS.pdf) Also feel free to join us on FaceBook NY ASAP Support Group...You don't need to be from NY to join :) [https://www.facebook.com/groups/114149191946450/](https://www.facebook.com/groups/114149191946450/) ---
**Author:** ![Billie\_Jo](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.chiarisupport.org/billie_jo/32/72_2.png) [@Billie\_Jo](https://forum.chiarisupport.org/u/Billie_Jo)\ **Post date:** [March 20, 2014, 5:03pm UTC](https://forum.chiarisupport.org/t/vision-problems/4820/18 "2014-03-20T17:03:50Z")
Hi, my initial sx was blurred vision in right eye. Eye doctor sent me to neuro back in 94 and thats how i was dx. have always had slightly worse vision in right eye; now I am having serious problems with vision esp in right eye. Plan to go to the eye doc again but its disheartening when lenses cannot correct it. I had an episode of optic neuritis back in 94; it is associated with MS. Billie Jo Lang ---
**Author:** ![joker12090](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.chiarisupport.org/joker12090/32/2550_2.png) [@joker12090](https://forum.chiarisupport.org/u/joker12090)\ **Post date:** [March 20, 2014, 6:10pm UTC](https://forum.chiarisupport.org/t/vision-problems/4820/19 "2014-03-20T18:10:21Z")
Thanks for all the replies everyone. I called a Neuro Ophthalmologist that is about an hour away and found out he has multiple offices, and one will accept me, so I will be making an appointment and hoping my insurance will pay for it. I am still waiting on the decompression surgery. The doctor is fighting hard for it, but we have to wait for the appeal for my next MRI's to check for tethered cord. I have another doctor I need to see in April before I can have surgery also, and it has all been very stressing. The NS wanted me to have the surgery a couple weeks after seeing him. That was Jan. 30. I feel myself slowly getting worse, and I feel like the longer this takes the worse I get, the more doctors I need to see, the longer it takes... Ect. I appreciate all of you for posting, and helping me figure out my next step! Thanks everyone!! ---
**Author:** ![Jozy](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.chiarisupport.org/jozy/32/2087_2.png) [@Jozy](https://forum.chiarisupport.org/u/Jozy)\ **Post date:** [March 20, 2014, 8:00pm UTC](https://forum.chiarisupport.org/t/vision-problems/4820/20 "2014-03-20T20:00:49Z")
Hang in there Joker!! Keep your joy no matter what! I too am waiting on my 2nd opinion for surgery. We’ll see what happens. Ive just been managing my black outs, tingling, no csf flow on right side, pressure & pain of course. Ugh. I try to keep a sense of humor and continue to trust God. Take care & stay in touch. [Next page](https://forum.chiarisupport.org/t/vision-problems/4820.md?page=2)