Taste and Eating habits

[nancyann]

Boppie had the best suggestion for dry mouth:  Biotene mouthwash + it replaces the much needed enzymes in our mouths to prevent bacteria buildup (Lord I sound like a Biotene commercial!).  I just picked up 2 bottles at the grocery store - I left my bottle at my mom's.   I also use the Oasis spray during the day (I haven't been able to find the Biotene drops - maybe they don't sell them in Florida?).
I've gotten the Listerine breath strips stuck in my mouth & on my lips from the dryness - UGH!

[vcschaub]

Hi Nancyann-

Biotene makes a gel, not drops. I had a hard time finding it until I saw that the gel is called "Oral Balance Dry Mouth Moisturizing Gel" and is made by Biotene. The Biotene name appears small on the tube. I buy it at CVS and use it at night. Hope you find it. I live in Vero Beach, just 2 plus hours north of Miami.

[nancyann]

Thanks V - Next time I'm at CVS I'll look it up - yes, I was looking for drops, not a gel !   Nancy

[4cm in Pacific Northwest]

COFFEE!

I had my first coffee yesterday and actually said “mmmmâ€? instead of “blach!â€? Mind you it was doctored up in  the form of a Starbuck's caramel latte – but oh it was good.

3 months+ post op and some of my taste buds are now blooming again. Now grapes and anything made of grapes... still – “double blach?�

Do we ever regain ALL of our normal taste buds we had pre-surgery?

4

[nancyann]

Hey 4 - It's getting better - I bought those Jello puddings - & I could taste the chocolate - YEAH for me!!!!!!    & I notice the metallic taste has almost gone away !  YEAH FOR ME AGAIN !!!!!    Haven't tried a nice juicy steak yet, what with the mouth issues right now, but you just wait - when my mouth is healed I'm cooking up a PORTERHOUSE !!!!!  (Hope I can taste it !)
Always good thoughts,    Nancy

[Soundy]

I have some biotene Oral Balance Dry Mouth Moisturizer liquid...it helps but tends to make me
nauseated... I don't know if it is the feel of it or taste (it doesn't taste bad just different ) or
something in it ...I suspect something in it that doesn't set well with me because the nausea
comes about 10 -15 minutes after use

I have become a sniffer of food and just eat because I have too... last night I had a stopped up head...
I am thinking from weather...last week we didn't get out of low forties and had ice on windshields
in the morning ... then Friday it was warmer and yesterday at one point was 78* on my porch...
I have had sinus problems when seasons change before surgery... with the stuffy head taste
became worse... it seems like anything that causes pressure in my head increases symptoms I have ...
be it taste disturbance or head ache

did get a gift of homemade salsa from a friend and could taste it ...

[LADavid]

Taste was the first and biggest issue after sugery.(I didn't know what else I was going to have to deal with).  I thought it was the hospital food -- then I came home and tried eating nachos - nada on the nachos.  It took over a month, but I'm finally getting my taste back -- sweets are the tastiest -- especially ice cream.  Chips don't taste so much like cardboard anymore.  I was almost promised pre-op that I would lose my taste.  Question for everyone -- for those who have regained your facial movement -- was your regaining of taste linked to that?
David

[4cm in Pacific Northwest]

Welcome David,

The facial nerve is part of the same nerve as taste (saliva) i.e. Cranial nerve VII

This explains the cranial nerves
http://en.wikipedia.org/wiki/Cranial_nerve

My taste returned before the facial nerve movement. (Everything but sweets tasted dreadful right after surgery… but has improved tenfold over the last 5 + months)

I still do not like the taste of grapes and apples. 50% of my facial nerve muscles are now working (I had 0 % movement just after surgery) … and 90 % of my normal tastes have returned. I love coffee – but for 3 months I thought it tasted repulsive. Now I so enjy my morning latte. 

It is hard to be a ‘patient’ patient – I know. I too was in performing arts and this facial palsy is challenging. Many of the facial exercises, one did in drama class, will be helpful once the movement starts up.

Hang in there. It DOES get better with time and healing.


Cheers,

4

[Boppie]

My facial problem was extremely brief, two months at most.  I only had late onset weakness of the eye, lip, and eyebrow arch.  Oddly the taste and tongue were my bigger issues. During the first year post op I posted often about weird tastes and dry mouth.  I could usually get a true taste sensation from chocolate during that time.  After the numb tongue went away I still had the taste problem.  By one year I recall that I was back to normal with taste issues.   No two ANs are the same, as we say.

[LADavid]

Hi 4
Thank you for the input.  Right now I'm obviously looking for any sign of encouragement.  And if taste and facial nerves are linked, I have some assurance.  My patience problems come from expectations.  While still in the hospital, I was assured by the surgeons that I would back to normal in two months.  After a month or so when I saw no improvement, I became concerned.  I paid a visit to the clinics internist who informed me now that it could take a year.  That was quite a blow.  I was alone with no one to turn to for advice or direction.  That was before I discovered all of you.  I don't feel alone anymore.  Thank you for your support.
David

[4cm in Pacific Northwest]

David,


My follow up physician told me that Bell’s Palsy recovery can take from 3 months to 3 years (“years??!!â€? – I gasped  ) . At 3 months and 5 days (not that I was counting or anything  ) I had some movement… a mm on my upper lip.

It is recommended not to message or to do facial retraining exercises until signs of movement start up… as it can cause unnatural nerve growth such as synkinesis.

http://www.enotes.com/neurological-disorders-encyclopedia/facial-synkinesis

Also avoid chewing gum to avoid developing asymmetry in the facial muscles.

I highly recommend this inexpensive little booklet.

The Facial Nerve and Acoustic Neuroma: Possible Damage and Rehabilitation (AN4)
Tips and information for patients who have facial weakness or paralysis after treatment for acoustic neuroma. Includes an explanation of the facial grading system and some exercises that can be performed at home to improve facial tone. Updated: February 2007

Price: $2.00

https://secure.baxinternet.com/~anausa/for_sale.html


Here is a good website to go over.
http://www.bellspalsy.ws/

Know that you do not have to go through this alone and there are others here for you.

There are various locations that hold support group meetings too. In hindsight I should have become a member of the ANA before the surgery… as they inform me of where and when the next meeting is in my area.

Keep moving forward!

Cheers,


4

[Soundy]

7 months and 3 days later I am still having taste issues... the dryness is gone  but still have the
metallic taste in my mouth but have figured out what to avoid eating

I am having some twitching in the outside corner of my right eyelid that the doctor is just
watching ... going in tomorrow to have facial nerves rechecked ... have another hearing test on
working ear Feb 19th and kinda worried me that he wanted to look at face now instead of waiting
til then...

as for time line ... if the man says one more time for me not to worry too much til a year is
up I may deck him

[LADavid]

Hi 4
Thank you for the leads.  I will certainly check into them.  And thanks for the advice on the exercises.  I didn't know that and I've been doing some as it is.  I think I read it somewhere in the stack of things I received from the hospital that I should be exercising.  I think I'm just going to let things be for awhile.
David

[er]

It has been awhile since last post but I also  am still having the eating problem. Except cholesterol is up and trigliserites. Just because of trying to find something that taste good and its any thing with allot of salt, fried, or sugar. 3 years since post op and bad sore taste. Brushing my teeth every time I eat or to cut the bad taste. I did get the dry mouth tooth paste & mouth wash it does work some what.
eve

[er]

Nancy,
I though you just went on got is called a 4x4 last year for you facial nerves . how is that going?
eve