visual disturbance with AN

[wendysig]

I have been experiencing a visual disturbance, I assume in connection with my AN.  I have mentioned this to more than one doctor but they have had no comment.  When I am am sitting still or standing still  I have no problem. My head position in relation to my body position has no effect on this.  I have had a balance  test which was borderline.  I don't think this is vertigo because I don't feel or see motion where there is none.  The only time I have these visual disturbances (for lack of a better description) is when I am walking and sometimes when I am driving.  I can't walkk in a straight line for very long, but I'm not sure of whether this is a contributing factor.  I kind of swerve  back and forth (left and right).  When there are either no other people or not many people close to me, whatever I am looking at doesn't look right (I have tried, but this is the best I can explain it.  It just doesn't look the same as it does when I'm sitting or standing still)).  Yesderday I was at the mall and it was pretty crowded.  When I looked at the people walking toward me it was disorienting.  I felt better when I looked at the floor.  Has anyone else had this experience?  I would appreciate any input.

Wendy

[Boppie]

Wendy, MY AN was 2cm when we discovered it.  For several years (at least 10) I had motion sickness disturbances, eye floaters, dizzy spells, wobbly walking, walking with my toes pointing out for balance, and dry eye.  I had eye tests, retina tests, annual checkups, etc.  Not one doctor disagnosed anything like a tumor in my head.  After two hearing audiograms and the MRI, I could speculate about all the poor balance manisfestations for myself.  My doctors and friends just nod their heads up and down when I describe this.  Only my husband noticed the Charlie Chaplain like stride and wobbly walking.

[Jim Scott]

Wendy:

I experienced similar disorienting episodes just prior to the discovery of my large AN.  Walking down stairs caused me to lose my balance and hold onto the handrail for dear life because my vision swam as I descended the stairs.  I would bump into walls just trying to turn a corner.  Driving became scary so I stopped and let my wife take over.  Shortly thereafter, my doctor requested an MRI scan which 'found' my AN.  Surgery came 3 weeks later. 

Jim

[Gloriann]

I had visual disturbances before my acoustic neuroma was doscovered. I could see straight ahead just fine, but whan I would glance to the left side is when things seemed blurry, like when I was shopping at the grocery store or walking past people at the mall.
How large is your tumor?

[wendysig]

My thanks to all of  you for your replies.  Knowing I am not the only one to have these symptoms tells me I am not crazy, which is the feeling I was starting to get from  all but one doctor (even though he too had no answer).  My AN was diagnosed by accident when my ENT was looking for something else.  He sent me for an MRI and there it was.  Luckily small 1.3cm, but there just the same.  When this all started, I thought I had wax in my ear.  Thank goodness my internist was on the ball and sent me to an ENT right away.  The one odctor who has listened to me and answered every question I hads a neuroltologist the ENT sent me to..  Unfortunately, he does not particiate in stereotactic procedures, although he did recommend Gamma Knife as the only one he trusts.  My internist and ENT think I should have  stereotactic radiosurgery as opposed to microsurgery because of the size of my tumor. I have seen one other surgeon (I thought this guy was also a radiation oncologist, but I was misinformed).  He rrecommended microsurgery.  I assume this is because he is a surgeon and it is was he knows and trusts.  I am seeing a radiation oncologist on Thursday.  I assume in advance, he will recommend a stereotactic procedure because it is what he knows and trusts.  I have done a lot of research since April 9, which is when I got my diagnosis.  Both procedures have their merits.  I am having a hard time deciding what to do.  I don't really want either procedure but know I must choose one or the other.  It is just a matter of who and what I trust more.  What do you think?

Wendy

[Jim Scott]

Wendy:

If radiation is indicated, I would go that route for your relatively small AN.  It's non-invasive and an experienced radiation oncologist should be able to offer you as much assurance as possible, even if no procedure can be absolutely guaranteed of total success by anyone. Radiation has a good record of success (stopping AN growth) and many here have undergone the procedure.  Just an opinion from a non-doctor but had I had the opportunity to have radiation, I would have.  I didn't have that option (AN too big when discovered).  You do.

Jim

[Debbi]

Wendy-
And, just make sure that whoever you decide to go with has sufficient experience specifically with ANs.  I think this is very important, regardless of treatment option.

Keep us posted.

Debbi - 2 days and counting...

[tony]

OK - no panic here - it is MOST likely a balance thing etc
which many here would understand.
However, at one in a million odds, it might be more
and just to be 100%, safe its worth to check
At some point your Doc, or an eye specialist, needs to make a close inspection
of the back of your eyes (retina)
This involves a close look with the small torch
(10mins, and is completely painless)
I say again a simple, routine, check
but always worth it in an AN situation
Best Regards
Tony

[wendysig]

Thanks to all of you  for our input.  Tony, I never thought of it as an eye problem, but anything is possible.  The oidds against me having an AN were high and here I am.

Thanks again.

Wendy