Author Topic: New and questions about eye issues  (Read 2009 times)

VickiinNY

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New and questions about eye issues
« on: May 07, 2019, 12:30:12 pm »
Hello everyone, this site has been so helpful as I've been reading obsessively for the past few days! I want to tell my story so far and I have questions that I hope someone can help with.

I have been suffering with vertigo on and off for many years. I used to wait for it to go away but I heard that if you find the right therapist it can be much more successfully dealt with. So I did that, found a wonderful physical therapist, she tested me, found I had a crystal displaced in my right ear (a classic case of BPPV, benign paroxysmal positional vertigo), knew just how to fix it, and quickly cured the spinning environment that I had been living in for a month at that time. Afterwards I was to continue with therapy to improve my balance. But my balance didn't improve.

My ENT did not seem to like my report that I still felt dizziness, but it was a different kind of dizziness than before. Also I have ringing in my left ear, which I said didn't bother me too much (though it bothers me now that I know I have AN). I had a hearing test and it showed hearing loss in the left ear which I still do not notice. An MRI was ordered and the result, I was told, is that I have AN, 5mm x 3mm x 3mm on the left side. I don't yet know any more details because my doctor has been on vacation since the MRI and I will be able to see her next week and hopefully get more info.

My assessment of the situation now is that I had BPPV in the right ear while also having an AN in the left. But the whole thing is kind of confusing and I wonder if anyone knows if there is a connection between having these 2 things. I don't think that I was misdiagnosed with BPPV since it was cured. The old feeling of vertigo was feeling and also seeing the room spin if I moved or turned my head in certain directions. What I feel these days is more like light-headedness and when I walk I sometimes just slightly stagger off to the side which is embarrassing and comes as a big surprise to me when it happens. I have developed a fear of falling whenever I'm not sitting down. This is not good for me being able to get any exercise but I think I have to try.

My other mysterious problem is with my eyes. They burn and water all day, every day. I thought it was allergies but was told it is not. I went to an ophthalmologist and he said he sees nothing wrong with them. I read that dry eyes can cause watering but that doesn't make sense to me since mine are wet all the time. So when would they have this dryness that is supposed to make them water? I wonder if anyone has experienced this kind of eye issue. It doesn't seem to be a symptom of AN that people have mentioned here, but hey it is in my head so it's close to my ears.

So those are my 2 questions. Does anyone know if there might be a connection between the displaced ear crystals in BPPV and having an AN? And has anyone had similar eye issues to mine? I will be continuing to ask my doctors about my problems but wonder if anyone's experiences here might be enlightening too.

Thanks for listening,
Vicki   

jami

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Re: New and questions about eye issues
« Reply #1 on: May 09, 2019, 08:07:05 pm »
HI

Thanks for sharing your story - and sorry to hear about the dual issues.

I cant speak to the BPPV + AN combo, but my leading symptoms for the AN were eye issues + facial numbness. My eyes started getting red and swollen all the time (and I dont have allergies). For a while, I looked like i had pink eye. Never really sorted it out, but I did notice that when I traveled (I travel a lot for work), if i used anything in the hotel vs from home, the  eyes were out of control.

Post surgery, the eyes did better but will never be the same. I am super careful what I put near them and the AN side waters like crazy when i sweat.

Nothing enlightening, but thought I would still share.
Jami
-----
5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment
10/23/19 0.7 x 0.3 x 0.8 cm

ANSydney

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Re: New and questions about eye issues
« Reply #2 on: May 09, 2019, 09:26:24 pm »
Does anyone know if there might be a connection between the displaced ear crystals in BPPV and having an AN?

I don't think there is any relationship. Having an AN does not make you immune to other problems :-)

If your eye problems are related to your AN, the problem would only be in one eye and on the AN side.

VickiinNY

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Re: New and questions about eye issues
« Reply #3 on: May 12, 2019, 11:38:52 am »
Thank you both so much for your replies. It's hard to comprehend all the info about having an acoustic neuroma in the beginning. And I'm also trying to deal with my other issues. I will have an appointment with the doctor finally on Tuesday so maybe that can help to clarify some things for me. I go back and forth between feeling very upset and sorry for myself and just feeling like a normal me.

Wishing everyone who reads this the best outcomes,

Vicki

chrisabbott

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Re: New and questions about eye issues
« Reply #4 on: May 14, 2019, 04:56:41 am »
Both of my eyes used to bother me before I knew I had the bugger.  Over time, I noticed my eyes were dry in the night and started using eye drops.  By the time I found out what I had, I was already making an appointment to see my eye doctor because my eyes were so dry in the night.  Then I realized both dry eyes and dry mouth.  My AN side is worse, but my "good" side is also affected - maybe my blinking has changed or maybe the right side is just taking the strain.  I don't know, but I have some symptoms/sensations on the right sometimes.  It is only the AN side that I don't actually feel when I put in eye drops - but that was long time after I had first got the irritated watering eyes.

Go see your eye doctor, and explain your other health issues - if it is dry eyes, get ready to invest in a nice array of eye drops.

Strange tastes, facial numbness symptoms led to MRI 3/2019: 2.4 x 3.2 x 2.6 cm VS on left side
Left hearing went 4/2019
Translab 06132019:  1.4 x 2.4 x 1.6 cm residual stuck to facial nerve & brain stem
MRI 12122019:  1.6 x 3.2 x 2.3 cm
Translab 01132020:  0.1 x 0.75 x 0.57 + 1.5 x 0.5 cm
GK next

Cheryl R

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Re: New and questions about eye issues
« Reply #5 on: May 18, 2019, 12:29:00 pm »
There is no connection between the AN and BPPV.        Just coincidence.       I have had both too with help doing the Epley maneuver for the BPPV.     Also know of few with the BPPV and no other issues.    Having both is annoying.        You wonder what is causing what.   
The eye can water from being dry.       Try using heavy gel eye drops in the day how ever many times as you need.     Use the heavier gel in the tube at night.     There are many brands and can be trial and error what works best for you.       I like the Refresh liqugel.    Preservatives do not bother me but do some.     Genteal at night.                   Some smaller tumors can cause more symptoms than larger depending on location.
                                              I hope it goes better for you.   Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care