ANA Discussion Forum
Post-Treatment => Eye Issues => Topic started by: ksiwek on August 19, 2011, 09:37:51 am
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Hi all,
I just wanted to start a thread to see if anyone else has post-op rotary nystagmus? I am 14 months post-op and am still dealing with it. It has improved over the past few months, but it still remains. I have, overall, had a great surgical outcome so I feel bad complaining. The rotary nystagmus makes driving and walking in unfamiliar areas very tiring and uncomfortable at times. I am back at vestibular therapy and regularly do eye exercises. I even went to see a neuro-opth who wasn't at all helpful as he hasn't treated many AN patients. He had no suggestions for me...
I know that my neurotologist says prolonged rotary nystagmus is unusual and to continue on with PT. I am just feeling a little down about it lately as it really affects my ability to do my job (which requires 2-6 hours of driving daily) and then have the energy to take care of a 1 year old.
I know I had a large tumor and there are so many things about the brain that nobody can yet explain. I am just curious as to why this may be happening. The only thing that the neuro-opth had to say is that my balance system is compromised (well, of course it is!).
Even if there isn't an answer, I just want to know that I am doing what I can! So I am exercising, doing acupuncture, taking vitamins and praying ;D
If you would have told me last year at this time that I would be running a half marathon in 2 weeks I would have never believed it! Things have gotten so much better, but it is hard being patient!
Thanks for listening!
Kris
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Hi Kris .....
Sorry you are still dealing with the nystagmus.
I, as well, have periodic episodes of nystagmus ..... but I have had that since about a year before my first diagnosis of an AN (3+ years ago). I just figured it has to do with the balance/vestibular system. I know I should probably resume my gaze stabilization exercises like you are and I'm sure it would help.
In my case, I know it is worse when I drink too much caffeine. I can get by with my one cup in the morning, but if I have more coffee or iced tea later in the day, I notice more nystagmus. Being very tired makes it worse, as well. I suspect that might be the culprit for you ..... working full-time and taking care of an active one-year-old when home.
Hopefully you will see gradual improvement with this.
Many thoughts and prayers.
Clarice
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My retrosigmoid surgery to remove a 3 cm AN was on May 12, 2011 and I still have nystagmus. I had double vision but it cleared up on its own about 4 weeks ago. But I still have nystagmus. I noticed it while doing some eye exercises that I was given in my vestibular therapy. I would move my eyes from left to right and then right to left without moving my head. I noticed that at the end of the movement when my eye was to the right, that it felt like my eye was still moving. Well, it is. My physical therapist and my neuro-opthalmologist both confirmed it. Since my double vision cleared up, my neuro-opthalmologist said there was nothing to do for the nystagmus, but continue the exercises I am doing, try to ignore it and work around it, and it should clear up on its own. I was not given a timeline on when my nystagmus would become "unusual" if I still had it. I've told my neurosurgeon, my corneal ophthalmologist, and my neuro-opthalmologist about the nystagmus and they weren't surprised nor overly concerned. None of them said, oh you'll have it for a few weeks but if you still have it a year after surgery, that's not good. Like I said, none of them said that or mentioned a timeline.
It is annoying though. I haven't been back to work yet because of balance and walking issues, but I imagine that the nystagmus will bother me as I am an editor by occupation. My job requires sitting in front of a computer all day, reading. I've noticed I can't focus on anything while in a moving car, or when I'm in a busy environment. I end up getting really exhausted. I think it's a combination of the nystagmus and my balance problems. I haven't tried driving yet, because my reflexes are not good enough yet to attempt it. So we'll see whether the nystagmus affects that when the time comes.
I think it's a good idea to continue your exercises. It's good to hear you don't have balance issues and that you'll be running a marathon!
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Kris, I am 3 years post op and I still have nystagmus. once a doctor told me that it can be there forever. she had patients who had it even without having other problems. It is very embarrassing for me for example when i pluck my eyebrows and that is why always the right one is not the same as the left uninjured part, but that is it. i am learning to drive now and it bothers me too but like a lot of other things i need to put up with it.
hrissy