Lifesvr7, thanks for reporting to us about you seeing the retina specialist. I have seen a neuro ophthalmologist (about 1 week prior to being diagnosed with Chiari, so I didn't know to tell him about that), and he assured me my optic nerves are fine and healthy. He spent a lot of time with me, did many different tests, and as I was leaving he said "I want you to know you are not going blind. Your optic nerves are great. You may want to consider seeing a retina specialist though."...but once I got the Chiari diagnosis, everything else came to a halt and we only pursued that, the surgery, etc.
Lmnembhart, I understand about the foggy vision! That's about the only way I can describe it too. Slightly foggy, like you need to blink a few times, and if I look at the sky it's like a monochromatic kaleidoscope effect, or if I look off in the distance, many times it looks like it's drizzling but it's really not...weird, and somewhat unsettling. I keep feeling like my eyes are like those old projector bulbs, and it feels like they are about to just go out. :(
My NS doesn't seem to think Chiari and vision issues are related. That's frustrating...I wish he could meet all of us on this board!
I have found that I have gotten increasingly more frightened about my vision over the past couple years, because you don't know just how bad it's going to get. I do a lot of freelance writing and am on the computer a lot, and no one can tell me if it's making my problem worse. I just hear to limit my time on here, which I try to, but driving is horrendous. I have had two fender benders in the past, about 5-6 months, both in parking lots, because even with my glasses on, it is hard for me to judge distances now....as I'm maneuvering around the parking lot, it's hard to see how close a car is to me. That scares me. I have also found myself becoming more increasingly prone to just stay home. I don't like getting out and going places. I don't enjoy struggling to see, I don't want to fall down in public - I trip easily and have fallen multiple times, even around my home. I always have to close one eye (left mostly) to see straight. That's due to my double vision. I guess I should be thankful that I don't have, what I would call, "pain"in my eyes from all this, but I know my eye trouble does increase the pain level in my head. I'll get terrible head pain and am assuming it's from eye strain. I too am a single mom, and it has really hampered me being able to do things with my boys and "enjoy" doing anything. Some days I get down-right frightened over my eye situation. You don't know where you are headed with it....how bad it's going to get and how long it's going to take to get there.
I too have vision problems as do two of my boys. All of us have convergence insufficiency and intermittent exoptropia. Our eyes do not work together. We all get blurry vision, double vision, floaters and photophobia. One of my boys also has at times has nodular episcleritis. I have lost my corneal reflexes most likely due to the compression in the brain stem. I have not had decompression surgery yet but plan to this summer. Dr Driscoll has a great eye exam for EDS on her website at www.prettyill.com
I have acm 1. Had section of the filum terminale (tethered cord surgery) by Dr Royo Salvador in Barcelona Spain (google him) I had a bad right lateral nystagmus & it got way betterafter surgery. I also have a retroflexed odontoid with bassilar impression. I believe the odontoid is pushing right into the area of my occular motor in the brain stem hence my nystagmus… Fixes: Odontoidectomy to stop pressure on brainstem…check out the endonasal approach.) Section of Filum Terminale stops tight or tethered cord from pulling down on spine which also pulls down on brain ( because they are all conected.) And for the crazy movement of the eyes there is a surgery called a tenotomy for the eye muscles which I did not need.) All of the items above are just suggestions from my personal experiences and research.
P.S. the less I weigh the better my dizzyness. The additional weight of the body can compress the spine which can pull the brain down a little more to make symptoms worse. When I lost 10 lbs my symptoms got way more tolerable.
When my symptoms started up, I had issues with my eyes. I had nystagmus and sensitive to light. It has not gone away, but I had it for a few months. It was so strange. I did not have decompression surgery though. But it has gone away. I have periodic symptoms. With me I go through periods of being symptomatic then it goes away. Very strange.
I hope you have good luck with your surgery and feel better after it. I know this is so frustrating and feels never ending. Best of luck to you
I am wondering if there is anyone out there that has ever had laser eye surgery for eye issues, without having the decompression surgery, and if it helped or not. I've been told I am a candidate for laser eye surgery, but that was from an eye dr. who doesn't really know that much about chiari. I don't want my eyes to be harmed even more. So if anyone ever has had laser eye surgery for their issues, without decompression surgery, and had it help or made it worse....would love to get your feedback.
Hey guys, sorry I’ve been out of the loop for a bit… great to hear all your responses, from what I can tell it seems like we’re all at a loss for what to do about visual symptoms (as we are for all the others).
Emmaline - it was great hearing that you have improved since surgery, do you still see yourself on an upward trajectory?
Maria - I sympathize with pretty much everything you said, as I feel similar, I’ve even been wondering if laser eye surgery would help engage the need for glasses and prevent some of these headaches. Have you decided to get it?
Just to update you guys, I’ve still been holding off on any more surgeries, and have been told by various doctors that I should attempt vision therapy. I’ll keep you guys in the loop and let you know how it goes…
My eyes just keep getting worse to where it's hard for me to see/drive at night, even with my glasses. I think I'm developing night blindness. Going to see a specialist very soon and if he suggests surgery....may just go ahead and do it. I just cannot stand this anymore. I'll let everyone know what I do and if it worked.
I hate all this numbness too, in my extremities. I am cold and numb all the time now. Anyone else have that? I'd like to know.
Hi Maria
I have chiari and I have numbness in my hands and feet- I wake up several times a night in aweful pain in my hands. I haven’t had surgery yet- next appt with NS is dec 3- I have other problems with my spine due to an auto accident 10 yrs ago- not sure if this pain in my extremities is from that or chiari - will keep posting as I go along. Great luck to u-
I was diagnosed in July with a 10mm herniation, I went to the ER due to diziness, headaches and vision issues. My right eye would not focus at times. I had my decompression surgery October 15th and all of my symptoms have all but gone away. RT eye focusing properly, diziness is gone and havnt had one migraine like headache. I have been so blessed finding the right surgeon and treatment. I too had severe light sensitivity before my surgery. Hope you can find a good neurosurgeon and get some help.
Hey Edwin, it's amazing to hear how quickly and completely you improved! Which doctor were you treated by, and if you don't mind me asking, what were the specifics of the operation? Did they open the Dura? Was there a Laminectomy?
Sorry for all the questions, I totally understand if these things are too personal to share.
I apologize for not logging in for months. My surgeon performed the craniectomy and removed a piece of bone from the top vertebrae. He do not perform the duraplasty and I now wish he had. I was completely pain free for approx 5 months. As of now I suffer from headaches weekly but not as frequent or severe. My eyesight has really started to decline rapidly over the last year.
Not sure if it is due to the condition or age or both. I went back to my surgeon the spring of 2015 and asked if there was anything else he could do and he advised that he would not go back in due to scar tissue.
I had eye troubles before Chiari surgery and tried vision therapy. Unfortunately, my Chiari syptoms were worsening and a few exercises was not going to help my vision with any success. If one is stable with symptoms vision therapy may be helpful for some.
AFTER surgery, I did another series of appointments with a wonderful, very knowledgeable vision therapist with very good results. I did wait to see if surgery would spontaneously help and save myself some time and money but that did not happen. Please note that the exercises help your brain to process images better and to encourage your eye muscles to work together.
For those with prisms in glasses, my understanding is that it is more of a visual crutch as it does not address the underlying brain processing difficulties. Folks just end up getting stronger prisms as your eyes and brain adjust to the “wedge” from the prisms.
Perhaps an optometrist (with accompanying vision therapist) that deals with vision problems from concussion and brain injuries would be helpful as the vision problems that they experience are similar (being of brain origin and all!)
Good luck in finding solutions as they are out there.
hi filum,
I am wondering if you are still on this as I have the same diagnosis as you
retroflex odontoid and basilar impression.i would love to talk to you did you do the odontoidectomy first or the filum sectioning???Can you tell me where you had the odontoidectomy endonasal approach done?
thank you so much
I haven’t had anything else done. Google Dr Greenfield at Weill Cornell in New York.
Read the reviews, he is good. Also I controlled my Nystagmus by not lifting more than 5 Lbs. When I used to lift things, including opening windows, pulling weeds from the garden, lifting pets or what ever… I noticed I’d be real dizzy the next day. For the past 7 years I don’t lift hardly anything and my dizziness pretty much disappeared, give it a shot… When I lift, my spine compresses downward and draws the odontoid right into the Medulla part of the brain stem that controls blood pressure, parts of our vision, breathing and other stuff. I hope this info helps.
I’m 25 and have Malformation 1 I also have a massive Syrinx which is causing me numbness throughout my body, but yes I too experience vision problems mine seem to come and go but when it is bad it’s like my eyes are out of focus. I also get slight vertical double vision. Let me ask you this if you are in a dark room looking at a digital display on a clock with me I see a ghost image above the real image it’s not always a completely separate image it’s like half the numbers are sticking out above it, but if I look at it out of the side of my eye instead of straight at it the double image doesn’t happen is this the same for you? I’m just curious as a week ago I had no problems and didn’t know what Chari was.