Yucky Taste in Mouth

[keepingthefaith]

Hi All,

At or around the time I think I started growing the AN, I noticed a strange taste in my mouth.  I cannot define it as metallic or dry.  For any of you who have ever had a hangover or a smoker's mouth the morning after, that is sorta what it tastes like 24/7.

I have no problem with taste of foods and have had I think, every possible test run to find the cause, i.e., upper and lower GI; endoscopy; colonoscopy and swab cultures of mouth.  Lastly, I had a thorough dental check-up to be sure it wasn't due to 50 year old fillings leaking.
The dentist didn't rule this out, but the only way to resolve it was to drill out all old fillings and replace with new substance.....too costly!

Anybody have similiar symptoms or suggestions to get rid of?  I will try almost anything at this point.

Keepingthefaith

[Jim Scott]

Keepingthefaith ~

About 9 months prior to my AN diagnosis I began 'losing' my sense of taste. In effect, everything I ate, even my favorite foods, tasted like 'cardboard'.  My body's reaction was a severely diminished appetite that caused me to lose over 30 pounds over the next 9 months.  Fortunately, I had 30 pounds to spare - but not much more.  Within a few days (following my AN surgery) my taste returned and has never changed, since. 

I'm not a physician and cannot offer credible medical advice but I believe an acoustic neuroma can involve the 7th cranial nerve that affects taste.  Unfortunately, AN removal can sometimes generate an issue with taste.  I can only hope that in your case, removal will positively affect your sense of taste because I don't know of any other remedy, although other folks may.

Jim 

[mk]

Strange taste, or a feeling of "burnt" tongue is an indication that the trigeminal nerve (or 5th cranial nerve) is affected by the AN. This was my first presenting symptom and I didn't have a clue what it was (neither did my doctor), until the sensation progressed to the entire right side of my face, triggering a referral for an MRI.  The trigeminal is a "sensory" nerve, with three branches. From what I understand the "odd taste" is due to altered sensation to the tongue. There is a separate  cranial nerve that controls taste, but this is way further, so it cannot be affected by the AN.
The only thing that confuses me is that your AN is small, and as Jim pointed out as well the trigeminal nerve typically is affected with larger ANs. I guess it is always a question of location.
The sensation may, or may not go away after surgery, depending on the extent of damage to the nerve and how it is decompressed.

Unfortunately as far as I know there isn't much you can do to get rid of this symptom - I found that salty and sugary foods taste the worse, so I avoid them. I can tell right away if a food has too much sugar or salt, from the metallic taste that it causes.

Marianna

[keepingthefaith]

Dear Jim and MK,

Thanks so much for your thoughtful responses.  Your comments only add to my thought that this taste problem must be related to the AN.

Jim, coincidentally, my appetite has diminished somewhat, however, unfortunately it has not resulted in a 30 lb. weight loss, which I could definitely benefit from.

MK, strangely, neither salt nor sugar (splenda) affects this taste.  That said, I do crave the crunchy/crewy foods!!

Really appreciate both of your thoughts and I am now shopping around for the best Dr. and treatment.....I need to just move on and try and preserve what hearing I have left.

Keepingthefaith   

[Donna R]

Yes, I also have that, very dry mouth, especially through the night, and when I eat something, it just doesn't taste right. During the day, I usually chew a piece of gum for the bad taste in my mouth. My tongue feels as if I burned it.   I am hoping this all subsides after surgery.

[leapyrtwins]

Yes, I also have that, very dry mouth, especially through the night, and when I eat something, it just doesn't taste right. During the day, I usually chew a piece of gum for the bad taste in my mouth. My tongue feels as if I burned it.   I am hoping this all subsides after surgery.

Actually dry mouth and metallic mouth (bad taste) are both common side-effects post op.  They both generally go away in time though.

In the meantime, you might want to try some zinc.  Some people say it helps.  I'm not sure it does - but it definitely can't hurt.  I took it myself post op.

Jan

[Kathy M]

I can sooo relate to the bad taste thing.  Before my Jan'09 surgery,  my taste buds worked great!  Now they don't and I always have that metalliic taste in my mouth.  Fortunately, the only thing that I can't consume any more because of the taste difference is carbonated drinks, which weren't good for me anyway.

Looking back over the years, before surgery, my tongue ALWAYs felt like it was burnt.  I thought that it was because I drank my coffee scalding hot and never thought a thing about it.  I also loved hot cinnamon and thought between the hot coffee and cinammon, I had burned my tongue beyond repair and didn't think anything else bout it!  Now I realize that I could drink the really hot coffee because of the lack of sensation on my tongue.  Who knew?

This is the strangest journey I've taken in a long time!!!  And good luck on those 30 pounds!!!  I kinda wish that chocolate wouldn't taste as good as before surgery, but it is still my favorite food group!!!! 

Kathy

[yardtick]

I hate to say this...but at times I STILL have a yucky taste in my mouth!  It's been 2.5 yrs since surgery.  I also have a very dry mouth.  I suck on mints like there's no tomorrow.  I guess because my neuroma is facial and I suffer from headaches, might be the reason.  Who knows?  I do like to eat and I find that since my surgery I like my food to be very spicy.  Lots of fresh garlic, hot peppers, onions.....flavour, flavour and more flavour. 

I'm thinking my gypsie blood might have something to with it and being married to an Italian.  I can't blame my neuroma for EVERYTHING can I? 

Anne Marie

[OTO]

I'm 22-months post-op and still have funny tastes... it has evolved from a metallic taste to a burnt tongue feeling... to several weeks ago... a salty spot that just won't go away.    Some days after my morning coffee, my whole mouth tastes like dirt.  I end up chewing gum and sipping water all day... 

[yardtick]

Oto,

I can relate.  I love my coffee, but gosh some days afterwards I feel like an elephant has pooped in my mouth.  I'm always brushing my teeth.

Now when I'm cooking I have to get a second taste tester.  I just can't seem to tell if I've added enough salt.  Thank goodness I've got 5 able and ready taste testers around here!

Anne Marie

[nancyann]

Keepingthefaith:  I didn't have any problems pre-op,  but post-op has changed all that.  I had a metallic taste for at least 6 months,  then it started going away.
My salivary glands don't work on my right side,  so my mouth is constantly dry. 
I can taste vegetables & fruits,  but meat, chicken, some fish, have diminished taste.
Along with milk chocolate (I eat the dark healthy chocolate now), ice cream.
So,  my diet changes have been for the good !
As for the dry mouth,  I  drink alot of H2O & use a green tea/echinacea cough drop a couple of times a day
& Listerine breath strips.   Biotene mouthwash helps to replace enzymes I'm lacking from the decreased saliva.
& I have my teeth cleaned 4 times/year.

Always good thoughts,   Nancy

[anissa]

This is a very interesting thread!  I've had a burnt-type taste on my tongue for quite a while and get incredibly thirsty but I attributed that to nursing and needing the extra fluids.  Now that Addi is weaned I still have it but never attributed it to the AN.  Hmmmm.

[Kathy M]

HI Anissa!

I can relate to the aha moments!! Looking back, I had all kinds of symptoms over the years that were directly attributable to the AN, but I just made excuses for them (and so did my doctors, sad to say!).

I'll be thinking of you Wednesday!  I'm sure you'll do great!!!

Kathy

[suz]

Whether it is related to our AN's or not, I am releived to find someone else with a similar symptom. I went through that last year and pretty much just gave up and accepted it as related to my AN. I find that the funny taste comes and goes, just like my other symptoms so it makes sense that it is related. I find the taste changes as well - from metallic to sour/sweet to bitter. Personally, I am so sick of pursuing vague symptoms like this because it could become a part-time job!  I am like the proverbial "princess and the pea"; I am very sensitive to changes in my body and this has been a blessing. But sometimes I wonder how many of the little odd changes I notice are related to my AN. Since I am also a cancer survivor and a W&W AN patient, I some expereince with a weird symptom actually turning out to be something serious. Thus it is a challenge to not act on EVERY little symptom. But it seems that AN's have alot! The silver lining that I see in having an AN is that I am truly appreciating what I have NOW more than before.