Has any one experienced trouble reading?

[saccadiceye]

First of all, thanks to everyone for the very insightful posts.

Unfortunately, I have continued to experience dizziness, vertigo, and a movement disorder of the eye that makes it difficult or sometimes impossible to read. I have noticed only a small improvement in my eye tracking issue (saccadic eye movement) and related nystagmus. Basically words seem to jump when I try to read text. Also, when I see cyclists and cars on the road they sort of skip through my field of vision. Nevertheless, I am continuing with my eye gaze exercises, which I started approx. 5 months ago. I am also seeing a vestibular physiotherapist.

I was wondering if anyone on this board has experience with dizziness originating from the cerebellum or central nervous system? More specifically, I was wondering if anyone has experience with similar reading issues?

I am now almost 9 months into my recovery and am still not ready to work. Some medical professionals say I will have to live with these visual issues for the rest of my life. On the other hand, my neuro-surgeon says that he still expects me to "feel like my old self" sometime in the near future. He also says the healing will occur over time and on its own. Oddly enough, he also doesn't think vestibular rehab is necessary either. However, to me, with each passing month resolving this issue seems like an increasingly unlikely outcome. Although, I am only in my early twenties, so maybe I'm just impatient.

PS: I have seen a neurotologist and a neuro-ophthalmologist. However, they were not able to provide me with concrete answers.

Thanks,

[Echo]

Hello Saccadiceye,

I have balance issues and they are tied in with eye issues.  I wobble occasionally and wander from one side of the sidewalk to the other and back again, most notably at night in the dark.  I do not get dizzy or have vertigo.  I have been doing vestibular rehab for the past 4 months and my therapist is focusing on eye gaze exercises.  I struggle with things like grocery shopping. If I am walking down an aisle and scanning products on shelves, the labels eventually start to jump sideways or I just can't focus if I'm moving and moving my eyes at the same time.  I have to stop and very slowly scan until I find what I need and it can be quite frustrating, especially if I'm tired.  I don't seem to have issues looking up and down, just sideways.  If I spend a substantial amount of time at work typing info and need to turn my head a lot to look at my desk and back to the monitor, eventually the copy on the monitor will jump - not just a word, but the entire image on the monitor.  If I am typing emails and looking continually at the monitor I'm okay, so it's definitely connected to my head turning.   

I sincerely hope things improve for both of us.  I know personally I am making progress. Exercises I started with 4 months ago that used to make me feel wonky are now easy and not at all challenging. New exercises this week have me back to feeling wonky and somewhat nauseous, so I have work to do to get past those feelings.  I think Vestibular therapy is one of those things that will take time and the amount of time required will be very different for everyone.

By the way my neurosurgeon and my neuro-opthalmologist both recommended Vestibular Rehab.

Take care,
Cathie.

[saccadiceye]

Thanks for the reply.

I'm glad you are making progress. I did fairly simple exercises for approx. 5 months and noticed very little improvement (they were still straining). Now, as of Monday, I'm doing more advanced stuff and already I see some improvement.

Interestingly enough I've noticed that my balance system has improved considerably in those 5 months. I can do the balance on one leg w/ eyes closed for 60s drill, and the bosu ball w/ eyes closed for 60s drill.

Previously, I think I devoted 60% of my time to balance work, as opposed to visual work. Now I'm supposed  to devote about 95% of my time to visual work.
 
Hopefully, this will pay off in the next few months.

[622Hath]

YES on both challenges reading and vision "skipping".
 
After reading on the computer or books/kindle my vision is slightly double or blurry for a short while.  I have found vestibular rehab to be extremely helpful even though my neurosurgeon (I am a watch and wait) did not recommend it either.  Christy Hudson in Exeter New Hampshire has been terrific; in fact she saved me months on the AN diagnosis because she suspected what it was right away because she has treated other AN patients.  Not only are the eye and balance exercises helpful but I also do yoga and play tennis which are both helpful in having to balance and track targets.  Walking outdoors really helps although I am not sure why.

I have also heard there is a very rare group of ophthalmologists who are not surgeons but work with people who's eye movements and brains don't match up (which is what creates all these problems).  They sometimes recommend special reading glasses with prisms to help as well as additional eye therapy including a Brach String (3 beads on a special string).  I would be eager to hear from others if they have tried any of this and found success.

We have a  challenging condition because it falls under so many different specialties....

[deborahgordon]

thank you for your post.  I have been having the same issues with my eyes and the doctors did not feel it was from the AN.  I am glad to see I am not crazy lol.  I will be having surgery on Dec 3rd so I will let you know if the balance and eye issues improve.

[saccadiceye]

I probably first experienced the eye issue in the Fall of 2011, so about a year and a half before the surgery. However, it was so mild that it didn't really interfere w/ any day-to-day functions. I wasn't actually aware it was an eye issue at the time, I just thought I lacked the motivation to read, etc.

[millie]

Hi guys-
Just wanted to say after surgery, my vision was off and it took me a while to be able to focus on the t.v.  I certainly couldn't concentrate to read.  People would say enjoy your recovery, now is the time to catch up on all those books-and I could only really depend on one eye, as the other didn't close and needed drops. Not being able to read was ironic for me as I was an English teacher and I always loved escaping to the written word.  I started out trying to focus on paragraphs in the newspaper, one eye shut. After several weeks, it got better.  After three months, I did not need eye drops and reading was much better. I think I remember doing some exercises; focus on something as I gazed around the room, stop, focus on it for a while, then move on, stop and focus, rest there a while, then move on.
My eyesight pretty much came back to normal but in the last months, I think I probably have some eye change and just need some new glasses due to normal reasons of aging…hey, I'm 66. We are all doomed to cataracts, I have been told, or something like that.  However, I walked seven miles the other day no problem-and I saw everything perfectly, never even thought about vision, -so I think you are a work in progress.
Hang in there.
Mil

[Echo]

I like the comment you made Millie, "you are a work in progress, hang in there". 

I keep telling myself that same thing, especially when having rough or wonky days.  In an earlier post I put in this thread I mentioned the "jumping" issue I have when grocery shopping and scanning shelves for products.  I'd now like to add outdoor Christmas Lights to my list of "jumpers"!      As more neighbors light up their homes, my nightly walks with the dogs are becoming quite interesting.  Trees bounce, snowmen move and houses twitch!!!  My walk the other night went from "wow this is really weird" to "this is freaking annoying".  Hopefully by next Christmas this weirdness will be a distant memory and my vestibular rehab will be paying off.  Meanwhile, I'm going to keep taking those nightly walks and enjoy the Christmas season one way or another.

Cathie

[deborahgordon]

I had some eye issues prior to the surgery but now am having too many to list.  Mine are stemming from the complete resectioning of the facial nerve and the paralysis I am left with.  The meds to keep the eye moist were delayed somehow and I only have a small amount of shadow recognition in the left eye.  They have sewn it shut for now and In 2 weeks will be putting in the eye weight.  As of now we are dealing with my head starting to swell and other things that are hampering my getting out of the hospital.  The eye doc is not sure what I will regain and at this point is recommending no driving for a min of 6 months and to go to short care term for appx 30 days to adjust to balance/sight issues to make it safer for me to return to living alone.  Facing my new reality with a 5 minute 3x weekly pitty party, then moving forward and learning all I can to live the best and be the best I can be for those I love and someone my grandchildren can pull strength from and know I will never stop trying my hardest to improve

[saccadiceye]

I had some eye issues prior to the surgery but now am having too many to list.  Mine are stemming from the complete resectioning of the facial nerve and the paralysis I am left with.  The meds to keep the eye moist were delayed somehow and I only have a small amount of shadow recognition in the left eye.  They have sewn it shut for now and In 2 weeks will be putting in the eye weight.  As of now we are dealing with my head starting to swell and other things that are hampering my getting out of the hospital.  The eye doc is not sure what I will regain and at this point is recommending no driving for a min of 6 months and to go to short care term for appx 30 days to adjust to balance/sight issues to make it safer for me to return to living alone.  Facing my new reality with a 5 minute 3x weekly pitty party, then moving forward and learning all I can to live the best and be the best I can be for those I love and someone my grandchildren can pull strength from and know I will never stop trying my hardest to improve

Thank you for your post. My issues are insignificant in comparison to what you face.

However, I am confident your quality of life will improve, however long it takes.

[millie]

Deborah, I think I read correctly your surgery was December 3rd…I too had real eye trouble after surgery-took several weeks to be able to focus with the eye on the surgery side, and watched a lot of t.v. with one eye closed.  My eye did not blink either.  But it got much better almost back to normal, and for me it is fourteen months after surgery.  I have a little facial paresis too and my eye closes squintily when I smile, but it is not too bad. I am hoping to see more improvement with time.  Best wishes for a strong steady recovery…Mil

[deborahgordon]

thank you millie