Author Topic: bad taste in mouth  (Read 6055 times)

perrybreitenstein

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bad taste in mouth
« on: September 08, 2011, 01:08:33 pm »
 This is my first  posting. My wife an AN surgery Aug 30. 1.8 cm tumor removed also a cyst which the surgeon called "impressive".  All is well or as to be excepted post surgery. One question...anyone have ideas as to what she can eat and drink  that might taste well as she puts it like poison. Foods and beverages including bottled bottled.  taste horrible?

Jim Scott

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Re: bad taste in mouth
« Reply #1 on: September 08, 2011, 01:26:58 pm »
Hi, Perry ~

Welcome to the ANA website discussion forums.  I'm pleased to learn that your wife came through her AN surgery in good shape. 

As you know, ANs can affect the trigeminal (5th) nerve which can affect the tongue, where our taste receptors are located.  Many AN patients experience 'taste issues' post-surgery.  Fortunately, they usually subside over time.  I'm 5 years post-op and retain a small 'spot' on the side of my tongue that never fully regained it's normal sensation, although it hasn't affected my sense of taste.  Some AN patients struggling with this problem (taste) try zinc tablets, which may or may not work but probably do no harm, taken in moderation, of course.  I'm sure others will follow with more suggestions.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

perrybreitenstein

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Re: bad taste in mouth
« Reply #2 on: September 08, 2011, 02:27:16 pm »
Thank you Jim

mk

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Re: bad taste in mouth
« Reply #3 on: September 08, 2011, 06:07:06 pm »
I had horrible taste too after my surgery. Especially liquids (including water) tasted very odd. I couldn't drink coffee (it tasted like ash). It did last for quite a few weeks, but then resolved completely. In addition to the 5th nerve, the facial nerve is also responsible for taste sensation on the front two thirds of the tongue - so even a slight damage to that nerve can cause problems with taste. Don't worry, it will probably resolve soon.  For now, just try to avoid the foods/liquids that are the "worse offenders"

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

sterry

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Re: bad taste in mouth
« Reply #4 on: September 08, 2011, 07:16:42 pm »
I am almost 2 years post trans lab for 3.7 cm AN, and I do have a tongue issue that leaves me with a salty taste in my mouth all day :(  I enjoy foods with lost of flavor,because it gives some relief for a while. Tomato stuff really irritate. It feels almost normal after sleeping all night,but starts up after even some water.  I am hopeful that some day it will a be gone!:)  I hope yours get better soon.  Try sweet foods and lots of flavor. I did loose almost 30 pounds in the first year and it has stayed off:)
Susie in Wyoming
Left AN 3.7 cm. 10-23-09 
HEI Dr. Friedman, Dr. Schwartz
Translab
Doing well

deboline

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Re: bad taste in mouth
« Reply #5 on: September 09, 2011, 07:59:41 am »
I am seven years post surgery and I still have what I describe as a "metallic" taste in the back of my mouth. It has improved over time, but still there. I started out eating very plain foods after my surgery - mashed potatoes, milk, pancakes with nothing on them etc.  I also could not tolerate soda - tasted like just the seltzer water.  After things improved some I found a strong gum that I use - Eclipse, spearmint - but even so have to change to gum about every 30 minutes because it takes on the metallic taste. 
At the beginning I did a lot of research to see if I could get rid of this taste.  I even had a "tympani nerve" snip, which basically cut the nerve that controls the taste buds in the rear of my mouth on the left side. Well, that did nothing so I followed up with an expert who has done studies on this issue - what I was told is that I have a "phantom taste" - basically a form of nerve damage from the surgery - my brain is sending the signal but there is not necessarily anything causing the taste.  Over time this has been one of my most frustrating issues - especially at night or when I try to lay down - I have the taste going down the back of my throat and the nauseated feeling.
Currently I use a mix of water (20 oz) 1 tsp of salt, 1 tsp of baking soda and I try to rinse and gargle at least 3 times a day. This helps for a while. Also, I noticed in the morning before I would eat or stimulate my saliva glands with smell (like cooking bacon) I would have less of a problem. 
If you are just having bad taste when you eat, that hopefully will clear up over time. If you are having constant bad taste you may want to continue to research for something that will help make more tolerable.  Best of luck!

leapyrtwins

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Re: bad taste in mouth
« Reply #6 on: September 10, 2011, 06:59:33 am »
Metallic mouth is extremely common post op; lots of us here had it.

It tends to go away in time, so my best advice to your wife is to just wait it out. 

Better days are coming.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Rivergirl

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Re: bad taste in mouth
« Reply #7 on: September 10, 2011, 08:48:53 pm »
I am 4 months post op and I went from no taste but metal in my mouth to much better now.  I could taste cold and salt before an all else was metal.  I was so nervous it was permanent but I barely notice any it anymore, just happens on a few foods.  Hopefully it will get better with time.
Diagnosed 6/2008
Right AN 2cmx8x9
Sub-Occipital at Mass General with Martusa and McKenna on 5/31/11
Right SSD, very little taste
I think I will make it!

Helga

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Re: bad taste in mouth
« Reply #8 on: September 12, 2011, 07:24:24 am »
I am now 2 years post-op and just a few weeks ago realized that the salty/off taste had gone away already some time ago, funny how you get used to everything. Luckily it was located just on the left (AN/surgery) side of my tongue, so the right side was fine. The worst for me was bread, tasted very bitter, and I couldn't enjoy my favorite poppyseed Danish. So for me it was maybe a year to year 1/2. I still have decreased sensation on the left side of my tongue, feels a little like you burn it on hot chocolate or pizza, doesn't really bother me. So good luck, better tastes are on the horizon (unfortunately, I didn't lose any weight!).
Helga