Nystagmus

[WHWT]

Someone on the forum suggested that I might have nystagmus, so I researched it on the web.  It sure sounds like what I've been experiencing.  I'm 18 months past surgery.  Has anyone else had it this far past surgery?  Does it ever improve by itself?

[jerseygirl]

Hello,

I had nystagmus after surgery 18 years ago. It was considered mild but for me it felt really bad. It started going away after about 2 years. When I was examined by neurologists a few years later, it was not there, so its disappearance was documented. I am not sure really what helped. The brain tends to recover and compensate, I think, but it takes a long time. Those 6-8 weeks of recovery time that doctors tell us apply only to those patients with smaller tumors and absolutely no residual issues. For the rest of us, the reality is quite different.

                                   Eve

[nancyann]

Hi there -

I THINK my nystagmus was due to balance issues;
once the balance improved the nystagmus decreased.
I know when I went for balance therapy, during the testing they were also noting nystagmus.

Are you having any balance problems? I met a woman who was 2 years post op, & she started having balance issues again.

Best wishes,   Nancy

[WHWT]

I've had balance issues since before the surgery.  That's what brought me to the doctor in the first place.  My hearing was perfect in both ears, but I could not walk a straight line.
My eye doctor said my eyes are fine and that he could put prisms in my glasses.  I'd rather not do that.  I still have double vision in a particular range on the surgery side (left).  And, oddly, when I move my eyes far to one side or the other, the ringing in my ears intensifies!!!
ANs are such fun!

[Battyp]

Have you done any vestibular training?  Like Capt Deb says with the balance..if you don't use it you lose it.  I know for me I have to keep at it or I notice a decline.  I'm 16 mos out and don't have the eye problems unless I'm real tired and in a noisy place then my eyes and head feel buggy.

[WHWT]

No vestibular training, but I walk the dog on the hilly field near my house.  The ground is uneven and I really think the walking has helped me.   What does REAL vestibular training involve?

[nancyann]

Hi GL:  I've been going for Balance Therapy. 
Since I'm not a very compliant pt., I was told in my case the most important exercise is:
Stand with one foot to the side & slightly ahead of the other (close together),
close your eyes & turn your head to the left, then right several times, then up & down.(do it slowly).
Switch feet so the opposite one is slightly in front & repeat.
First time I did this I about fell over, so have something nearby to grab.
Nancy

[Battyp]

a variety of exercise that challenge your balance nerve.
I walked on the treadmill while turning my head left to right. I would ping pong off the bars and occasionally have to grab them for balance.  Jumping on a trampoline with my eyes closed.  I started off holding on to the handle then one fingered it then no hands.  I would tend to rotate while I jumped but I didn't fall towards the end.  Challenging yourself on a hilly walk would help you too.  When I walk I have trouble looking from left to right or holding my head up without getting the swimming fishbowl head feeling.  I can feel myself start to lean forward when I start to get tired.  I even picked up cones from the floor and handed them over my head while following it with my eyes.  Tough in the beginning but got better with time.

[WHWT]

Thanks for all the replies.  I guess the dog walking is a suitable form of therapy.  And the dog, my constant companion during the immediate recovery period, likes it, too.

[redgrl]

What is nystagmus?

[WHWT]

Basically, nystagmus is involuntary eye movement.  The definition gets more and more complex from there. 
What I just found out (when I googled nystagmus so I could give an intelligent response) is that in police work,testing for horizontal gaze nystagmus is one type of field sobriety test.  So between walking off-balance and the nystagmus, I always look DUI, no alcohol necessary!

[redgrl]

Thanks GL! I have alot of eye probs with left i so i was just curious.

[WHWT]

You're only three months past your second surgery!  I think that's still the active recovery period for most  of us.  You hardly recovered from the first when you had the second.
I don't want to discourage anyone, but some after-effects didn't strike until months later.  I think we have to be prepared for anything at anytime.

[Omaschwannoma]

Recently diagnosed with nystagmus with eyes tracking to the right that is consistant with the surgery.  I had AN surgery on my left side with retrosigmoid approach in January, 2005.  After 6 weeks of extensive vestibular therapy (including the unit where the floor moves and the walls fall away from you--eerp) with PT and at-home therapy every hour with the help of my husband I began to improve by leaps and bounds.  At 6 months I felt I hit a plateu with no more improvements in my balance.  At the one-year mark I discussed this with my surgeon along with an array of symptoms we all experience, headache with flashes of light, dry eyes, memory loss, eye twitching, my field of vision not able to hold still, etc. he said all of these sound neurologically related and I should see a neurologist in town.  I did this only to find out after tests for lyme disease and an EEG (all negative) that I should have a psych evaluation as my headaches were due to stress!?  I did not pursue his recommendation as he also, without a doubt, said my tumor had returned and I should drive the 5 hours to see my surgeon and tell him.  He told me this is the problem with having surgery out of town and proceeded to walk out of the room.  I pursued him to his office as I thought his approach was definately wrong and asked if this were his final diagnosis.  With that he ordered another MRI.  This one came out negative as what they see highlighted is the fat used to plug space where tumor was.  I was still positive my symptoms were not stress related and continued my search for answers through an ENT near me.  This doctor ordered tests for what they suspected was Menier's Disease due to new symptoms in contralateral ear (pressure changes, popping, constant tinnitus, heartbeat, tone changes) had test for hearing and all is well, ECoG test showed nothing but, ABR was positive.  On to another specialists and tested me for nystagmus.  This showed positive.  The specialist said the tinnitus in the good ear is caused by NSAID use.  I use ibuprofen to combat the headaches.  He said I should see a neurologist to help with my headaches?!  No thanks, been there done that and am a believer of "quality" of life and continue taking ibuprofen to ease my pain.    This specialist did not address the other issues with my good ear and frankly I'm tired of doctors.  Will wait to see if future MRI shows anything. 

[WHWT]

So sorry to hear you're going through so much.  It's so frustrating when you can't get a straight--or correct--answer.  The comment that the doctor made about stress being the cause of your problems really hit home.  Several--make that MANY-- years before my AN diagnosis, my then-doctor told me that the fullness in my head, the dizziness, the loopy feeling, palpitations, etc., were psychological and stress-related.  He said I should talk to someone about my problems.  Yes, doctor, a psychiatrist will cure that brain tumor.  I really think he thought I was a bored housewife, looking for attention.  As it turned out, my next doctor ran cardio tests and determined the palpitations were caused by mitral valve prolapse, which the first doctor suffers from, yet didn't recognize the symptoms!!!   And the only reason I know that is because the second doctor told me!!!  Once I had a diagnosis for the palpitations and dizziness, or so I thought, I stopped looking for an answer.  Doctor thought all was related to MVP, which I accepted.  Both of those doctors are out of the picture completely now.  Neither of them thought to run an MRI, despite all the symptoms that originated in my head, not my imagination.  When the off-balance feeling went into high gear two years ago, my next doctor, a young female, initially thought I had an inner ear infection.  But she told me to return to her in a month if symptoms didn't improve.  Next stop:  MRI, which revealed AN.

As for the nystagmus, I notice my left (surgery side) eye seems to be getting worse.  I can't focus on things at a distance.  Sometimes I can't even tell which kid is mine on the basketball court when they're running around.  Watching TV from across the room is annoying.  The double vision to the left side is still a problem.  And it exhausts me.
I was relieved to hear you mention the "moving field of vision".  My family doesn't know what I'm talking about when I describe that.
I have not had a formal diagnosis of nystagmus, and I don't know if I should pursue it.  What are they doing for your nystagmus?
I notice that things get worse when I'm tired or when I've been at the computer for a long time.
I hope you get some relief.