dry eyes and dry mouth

[kippy6]

A few months ago I started waking up w/dried tears around my eyes about 1-2 times a week. Looking back, occasionally when I look at the lights in my house at night, the room looks a little smoky toward the ceiling (light). I have asked my husband a couple of times if he thought the room looked a little smoky, and he told me no. Then, about 4 weeks ago, I started getting a salty taste in my mouth that rarely goes away. I have had an occasional problem w/choking on food that started recently. The other day I ate a dry frosted mini wheat, and it stuck to the back of my throat, and it took a lot of water to get it down. I'm not on any medications whatsoever. This has all started recently. And it seems like it is all getting progressively worse, which is why I've suddenly been able to put this all together. The past 3-4 days when I swallow, my uvula (that little thing that hangs down in the back of my throat) feels like it is sticking to my throat. I have been drinking water, and I don't feel that I'm dehydrated at all.

Also, when I open my mouth, I have a pain in the joint of my jaw in front of my right ear. I can also press on this spot w/my finger to produce the pain.

• The pain developed a couple months post-op, and I just figured it was from my surgery...but now I'm wondering if any of you have this pain on the side of your surgery?

• What kind of doctor evaluates the dryness of your eyes/mouth?
• Can this be related to the acoustic neuroma removal?

[Boppie]

Kippy,  I am almost 17 months post op and have used Biotene toothpaste for dry mouth and dry throat since the first week after surgery.  I have recurrent bouts of numb spots on my tongue and tongue sensitivity.  Some days dry bread sticks in my mouth and hurts my tongue.  I never had this pre op.  I think it is a little better than it was a few months ago.  My surgeon  told me this part of the face heals very slowly.  My dentist said I may never see complete resolution for my tongue and saliva.  He encouraged me to keep up with my twice a year dental checkups to keep an eye on my gums and use products that help increase saliva like the Biotene. 

I believe some people who have radio treatment have similar issues.  So, we just go on.  It is part of your new normal, but different from the old you.

I have often wondered if some of the problems in the mouth are related to secondary processes like oral thrush that an infant gets.  The tissues in the mouth need a lot of attention during the AN drama.

I notice eye problems when the sun is really bright.  My eyes will sting a little.  I don't look at bright lights any more.  So I guess there is slight sensitivity in my eyes, too!  I have dried tears in the morning too!  I am waiting for real tears to come out of my right eye.  This would be good.  When I eat lots of tears run down my cheek and sometimes from my right nostril.  All together I sound messy, don't I? 

I try to ignore the eye and mouth problems in the same way that I ignore tinnitus.  This is my life.  There is so much to enjoy.

[kippy6]

Hi Boppie - I'm going to have to check out the Biotene toothpaste. My mouth dryness has just recently started. I guess I could have a delayed effect from surgery. But I haven't heard much about dry mouth from the AN surgery. I mostly hear about the dry eyes. Do you know if a dry mouth is related to a certain cranial nerve?

Thanks!

[Boppie]

The cranial nerve is 7 or 8.  My tongue tip and side had transitory changes because the tumor had splayed out the facial nerve.  My facial nerve wasn't cut; it will heal slowly.  The dry mouth is related to the facial nerve numbness.  Dry mouth can appear and disappear.  It heals soooo slowly.  My eye, eye lid, nasal fold, tongue, lip curl, and cheek were temporarily affected.  My side temple, and eye brow arch hurt in the beginning.  Then I had eye dryness, eyelid droop, lip curl, lip twitches, and tongue/taste issues.  Everything has cleared up over the months, except some residual numbness in the tongue.  The timing and the sequence of appearance of symptoms, and healing seems to be different for many people. I was only diagnosed with facial weakness and with late onset of symptoms.  My doctor expects all of this to recover since my facial nerve, smile, grimmace, and eyelid were working immediately post op.  Symtoms didn't start appearing until day 10. I can't complain about any of my symptoms.  I am happy with the results I have.  I am so pleased with the way my nuerosurgeons took care of me.  At age 64 I was risking so much more loss than facial movement.

[nancyann]

Boppie:  Where do you buy the Biotene toothepaste? - I never heard of it !   Nancy

[kippy6]

Thanks so much. Sorry for asking so many questions. Since my dry mouth/dry eye symptoms started 8 months after surgery, I just wanted to make sure that my symptoms are truly related to the surgery. I wanted to make sure it wasn't something else like a problem with my salivary gland function. With the pain over/near my parotid salivary gland, I wasn't sure. Also, one of my best friends has Sjogren's, which main symptoms are dry eyes and dry mouth. My doctor sent me to a Rheumatologist recently b/c my bloodwork was positive for the ANA factor (lupus, etc... test). I believe that you have to be positive more than once for it to be conclusive though... I'm still learning.

I remember when I found out about my Acoustic Neuroma tumor. I didn't notice the symptoms at first b/c I attributed them each to something else, like being out of shape or getting older... I just want to make sure that I'm having a good balance of the ignoring and noticing symptoms. How does a person know when they have crossed the line into being a hypochondriac? I certainly want to guard against that. Thanks so much for your input.

[Boppie]

Nancyann, I get Biotene Dry Mouth Toothpaste in the same section as Sensodyne tooth paste at Walgreens.  There is also Biotene mouth wash but I haven't tried it.  Biotene says it is an Antibacterial Enzyme system.  It helps with saliva production.  I find it to be more soothing on my tongue than regular toothpaste brands.

[vcschaub]

I posted this under a different thread that asked about metallic taste in the mouth. I thought it might relate to this thread's discussion.

"I am 18 months post op middle fossa. About a month ago I developed an "on and off" metallic taste........ I have also been diagnosed with Sjogren's Syndrome which is an exocrine autoimmune disease in which the "excreting" parts of one's body are invaded by leukocytes/white cells. The most common symptom is dry mouth, but you have to have a test and have another symptom proven either through biopsy or serology. In my case, my lip was biopsed and the diagnosis was made. This was in addition to "flunking" the Schirmer test which is for dry eyes. For months I thought it was my AN post op dry eye that had come back but I could close my eye and now both of my eyes are dry. There apparently is no connection between the AN and Sjogren's syndrome........."

I have written to my surgeon, Dr. Brackmann, asking for his comment and he is out of town this week. When I hear back from him on post op continuing dry mouth and eye and the diagnosis of Sjogren's Syndrom and share it on this thread.

[lora]

They gave me the Biotene Mouthwash in the ICU when I was still in the hospital--works really well, esp. before bed.  Otherwise, I have always been a big drinker anyways (well who wouldn,t be with this "alien pod" living in my head?)

[lora]

You can also buy a product by Orajel called (duh) Dry Mouth Moisturizing Spray which is great to carry with you (as I did pre-op)  It is also sugar free great for us diabetics and doesn't taste too bad.  Got it at WalMart for around 5 bucks.  Lora

[kippy6]

I got a reply e-mail from my AN surgeon. I told him about the salty taste in my mouth as well as the dry mouth/throat and eyes.

He said that it can be related to autoimmune problems, and suggested that I go to see a rheumatologist and let him evaluate me. "In the interval, you can use eye drops and also carry a small bottle of water with you to moisten your mouth frequently.  This will often help.  Hopefully, this can then be sorted out." I guess I'll call my new Rheumatologist since my symptoms have changed since my last visit a couple of months ago.

Thanks to all--

[nancyann]

Boppie:  I bought the Biotene toothpaste & gargle.   Thank you the inside of my cheek doesn't feel as bad.   The mouthwash is great !!!!   Nancy