Rotary Nystigmus (eyes roate around)

[claire1]

Hi everyone
 Hope you all are haveing a better day today.

My question is; Does anyone have or had rotary nystigmus?  That's when you eye (or eyes) rotate around in circles.

My neurosurgeon,neurologist and otorhinolarnygolist said it was from the Acoustic neuroma vestibular schwannoma. I'm not sure what causes it since not everyone has it?

I am interested in any and all of you information and/or coments.

I'll be having GK next month in May2008 and hope that in time it clears up and decreases at least.

It's one of those things that the dr's don't speculate or give consise information on.

Have a Great Day
Claire

[sgerrard]

Hi Claire,

I do not have rotary nystagmus, but I do have mild positional nystagmus, which is beating of the eyes when I lie on my right side. These eye movements are caused by the neuroma affecting the balance nerve. The balance nerve is also called the vestibular nerve, and in fact most acoustic neuromas start on the vestibular nerve. That is why the radiologists always refer to them as vestibular schwannomas.

Unfortunately, the doctors really don't know why some people get it and some don't, or whether your GK treatment will help that symptom. You will have to wait and see. Does the rotation movement cause you very much difficulty? Does it happen all the time, or just now and then?

Anyway, it is good to hear that you have arranged for treatment of your AN. The most important thing is to prevent more problems from developing. If you get a chance, you can put the date on the AN calendar (see the bottom of  this post), so we can all wish you well when your treatment date arrives.

Take care,

Steve

[leapyrtwins]

Claire -

I just noticed from reading Steve's post that you have made a treatment decision.

Congratulations!  We'll be wishing you well in May - and before then of course 

Jan

[claire1]

Steve
 Thank You for the web page for the calender. I put my date on it.

I have the feeling all the time of my eyes rotating in circles.  It makes driving,walking,turning my head and similar things difficult but it's something that ther vestibular rehab is helping me overcome.  I'm not sure what I'll be left with after treatment or whether it will be the same (thats my guess) but as long as I can navigate and learn how to stand verticle more I'll be happy.

There's no miricle in life only a new way to survive,  And that's ok.
Have a great day
Claire A

[sgerrard]

Claire,

My feeling from my one visit to a vestibular lab was that they really do know what they are doing, and that vestibular rehab does work. I'm betting that in time you will get used to your "new normal", and be able to function quite well.

I must say, I like the calendar now that everyone is posting things to it. It does give a quick overview of what's coming up next in our little world. I hope we don't get too business like about it, though, or next we'll be having efficiency experts come in to tell us how to save more time. 

I detect a little bit more cheer in your outlook, which is nice to see, it sounds like you are getting more at ease with the situation. I hope you continue to do well.

Steve

[claire1]

Steve

I can only hope the efficency experts can tell me how to organize my life better..LOLOLOL  I tend to be a clean freak as it is but one more step towards C.O.D. doesn't sound too bad either  lol

I think the calender is such a cool idea.  I helps us all keep track of each other so we can bridge the gap.(so to speak)Make sure we are all OK and to see whats going on in other parts of the areas.

My daughter found me another poodle for companionship.  My poodle passed away last October 2007. He was 20 years old and my very best confidant.  I wasn't sure I could ever love another like Scooter but this little guy, Sammy, is a spitten image of Scooter with his own attitude.  A sweetie pie.  That's probably why my outlook has changed PLUS I can't stay in the negative all the time.  I needed to climb out of the abis and think future. (Whatever that is going to be) 
My life is what it is.

I plan on making it the best it can be given the cards I was dealt. Much worse things could have happened.

Have a great day
Claire A  *)