Author Topic: Terribly dry mouth and right eye  (Read 1953 times)


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Terribly dry mouth and right eye
« on: June 10, 2019, 08:48:54 am »
I am on Watch and Wait status and have been for two years.  I have had MRI's each year.  The tumor was discovered, of course, at the first MRI scheduled by my wonderful cardiologist after I told him I had been walking into door frames and had not been drinking.  The AN was about 7mm and showed little to no growth in the second MRI.  I have lost some hearing on the AN side and, due to age, some hearing, although MUCH less on my "good" side.  I am trying out hearing aids now.  Not really sure about keeping them--there are some pros and cons to the little buggers.

I have attended the seminars presented by ANA, last year and this, (Nashville and Cincinnati), and am so glad I did.  Both events were extremely informative and reassuring.  I have left both events feeling much more positive and encouraged by all the avenues open to AN patients.
My reason for posting--for the last few months I have found that my right eye, AN side, is so dry, especially while sleeping, that I literally have to manually raise my eyelid or else it feels like sandpaper drawn across my eye.  Also, just in the last few days, my mouth has been so dry I constantly have to drink something---water, green tea.  Drinking those is merely a very temporary relief.  I am thinking of buying Biotene, but wonder if it will be of true benefit. 

With an AN, the fun never stops.  Whenever I have anything going on, I always come to this site to determine whether what I am experiencing is a side effect of the tumor.  Unfortunately, more times that not--it is.  I would greatly appreciate any and all input concerning the dry eye and mouth problem.

My best wishes to all on your journey through the AN challenge.     


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Re: Terribly dry mouth and right eye
« Reply #1 on: June 10, 2019, 12:00:52 pm »
I have similar symptoms - I started with strange tastes, and dry mouth & eye before I was diagnosed.  I have very dry eye on the AN side and visited with a eye doc about this.  She advised, the same facial nerve is involved in saliva and tear production - it is possible your AN is pressing on the nerve.

I have visited with an eye doc for recommendation on best eye drops to use (I use heavier ones at night) and I have found both the Biotene lozenges in day & XyliMelts at night to be helpful.  My dentist also made a tray and I put a treatment on some nights to protect my teeth when my mouth is super dry.  I wanted to protect my eyes and teeth while waiting for surgery (later this week!)

I think it would be a good idea to have an eye doc look at your eye and help you make sure it doesn't get scratched or infected & bring up your symptoms next time you have a consultation for your AN (or maybe give your specialist a call if your next appt is a long ways out).  Good luck!
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: Terribly dry mouth and right eye
« Reply #2 on: June 10, 2019, 10:54:43 pm »
Are you using any eye drops?        There are heavy type gel ones for day use and heavier in a tube type for night.   You do not need to see a dr to use these and are at all drug stores and Target and Walmart.        Some brands may be trial and error if work better for you.          I like the Refresh Liqugel in the day and Genteal one in tube for night.     Preservatives in some of them do not bother me but do some people.   Eye care is very important.
   The dry mouth is not a problem for me but drug stores have more than one brand.                          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


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Re: Terribly dry mouth and right eye
« Reply #3 on: June 11, 2019, 06:31:39 am »
Walking into door frames is part of my life!!!!
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015


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Re: Terribly dry mouth and right eye
« Reply #4 on: July 01, 2019, 07:22:52 pm »
I developed dry eye a year after my Gamma Knife and at the 5 year point developed a dry mouth.
Eye care is really important - keep your eye's lubricated so you do not damage your cornea.
I use Tear Gel through the day and Systane ointment at night.   I also find the Biotene really helpful and rinse with it 2 or 3 times a day.

Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital


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Re: Terribly dry mouth and right eye
« Reply #5 on: October 16, 2019, 10:52:43 am »
I wake up to Terrible dry eye and mouth.  I was also getting a stinging sensation on end of tongue and lips.  I use eye drops before sleep and when I wake up.  I also find Scope works well on the dry mouth.
W&W for 25 years.  SSD left side.  MRI every 3 years.


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Re: Terribly dry mouth and right eye
« Reply #6 on: October 28, 2019, 07:00:15 pm »
I was diagnosed five months ago with a small AN, and just about a month ago, I started to have issues with the tear duct on the affected side. It is often itchy, which is new and bothersome, and I now use artificial tears. I'm using Blink--one specially formulated for contact lens wearers, and then the "regular" Blink for other times. The optometrist recommends Systane, but I'm slightly annoyed by the pricing at the moment, so am resisting, lol.

I will probably relent come next purchase.  ::)

I'm having newer issues with dry mouth, too, and am looking into the Biotene toothpaste.
NF2 suspected--genetics assessment 08/2019
05/25/19 W&W until 11/26/19
05/20/19-AN found R ear via MRI--7mmx4mm

-fullness in R ear, minor balance issue, tinnitus, FATIGUE-