Tongue hurt? Taste problems?

[Boppie]

For some, tongue numbness and strange tastes are part of the AN experience.  I have some tips. I only know one brand name, so this is only my experience.

1)  Brush with Biotene Toothpaste.  This product has enzymes which promote saliva in the mouth.

2)  Dry mouth is helped by Biotene Moisture drops a few times a day.

Note: Fact:  no saliva, no taste.   

[leapyrtwins]

Boppie -

ever hear of taking zinc?  I've had a few people suggest it to me and I figured I'd give it a try.  Now, about 10 weeks postop, my taste issues seem to be getting better.  I'm not sure if I can reasonably attribute it to the zinc, or if it's just that I'm further along in my recovery.

Jan

[Catflower]

I'm happy to say that the terrible metalic taste in my mouth is gone.  I'll be 4 months post op on August 17th.  Everyone said it would get better with time.

[yardtick]

I had the metalic taste especially when I drank wine.  I kept thinking the wine was off.....silly me!!  All joking a side sometimes when I least expect it the metalic taste is back and I had surgery Sept 8, 2006. 
Anne Marie

[Boppie]

Glad to hear some of you are rid of the taste problems .  Mine are mostly gone but the numb spot and dry mouth creep back once in a while.  This makes me wonder what is going on.  I get my second annual MRI this Fall.  I think I'll try the zinc.  My post chemo C survivor friend recommended that too!

[Boppie]

Anne Marie, Wine is still good, though! 

[nancyann]

The metallic taste has lessened for me, but I geuss I'm the exception to the rule re: taste - still have greatly diminished taste.  Hamburgers use to be one of my my favorites - now I can't taste them at all.  Like Boppie said, must be the decreased saliva on the right side.  Well, on a good note, I got into a dress this morning I hadn't been able to wear for a few years !! (can't taste why bother eating candy, ice cream...)  Nancy

[leapyrtwins]

Nancy -

thanks for bringing up one of the bright sides of this issue.  I wish I could have stuck to the "tastes bad, just forget eating it" attitude 

I lost a good amount of weight in the first 6 weeks postop, but have since gained it back.  Unfortunately, I eat when I'm stressed - and lately there's been a lot of that to go around.

Congratulations on fitting into the dress!

Jan   

[nancyann]

Hey Jan - same thing happened to me: lost weight, gained it back, then lost it again - Hang in there, you'll be losing again soon!!!

[neal r. lyons]

Thks for the tips as i've recently experienced the dry mouth and taste changes.

I don't care, however, what my taste buds think, giving up a glass of wine with dinner is out of the question!

Neal

[ixta]

I always think if someone ate my toungue they'd go "GROSS! This tastes like crap!
I ask my wife too all the time when I kiss, her, "you taste the foil at all"?

[Battyp]

ixta you're too funny!

Does anyone know of a correlation with left side mouth numbness and fullness issues? I do not feel like I get satisfied or full when I eat. I know this is part of why I have gained so much weight. I can only taste on my right side. Unf. cake, ice cream, sweets taste ok the wine and sour are NASTY!

Boppie thanks for the tip I'll try it out I hate this dry mouth thing. I'm eiteher too dry or drooling on myself. 

[lauriej49]

I am wondering if anyone has any tips for long-term taste change.  I had my AN removed via translab 11 years ago.  In the hospital I thought they were trying to poison me for the first few days until they gave me some soup and I thought I was in heaven.  Sweet tastes on the AN side of my mouth all tasted - and still taste - like liquid Novocaine.  I have acclimated to the problem by only chewing on the right side, and by giving up all drinks except water and tomato juice.  It's impossible to keep drinks on one side of one's mouth!  The plus side is I no longer drink any soda, and never drank alcohol so don't miss it.  But if I'm really thirsty, even one sip of Coke makes me gag.

I tried Zinc for awhile to no avail.  Anyone else with this situation?

I do not have dry mouth or drooling, but the affected side eye doesn't tear in the same way as the good side.  On the other hand, when I exercise, I always know when I'm working hard because the affected side of my nose runs!  Weird.

Lauriej

[leapyrtwins]

Laurie -

When I first had taste issues post op I asked my neurotologist how long they might last.  He told me that they may never clear up.

Thankfully, my issues went away over time, but I guess not everyone's do.

I was going to suggest zinc to you, but I see you've already tried it.

Hopefully someone else here will have something better to suggest.

Good luck,

Jan

[Jim Scott]

The AN-related taste thing is weird.  Because my experience is somewhat different than most, I'll offer it here for the sake of expanding the discussion a bit and demonstrating that while AN patients have similar experiences, none are exactly the same.  Ah, diversity!

Prior to my diagnosis, I pretty much lost my sense of taste and with that, my appetite.  The result was an alarming weight loss of over 35 pounds in 8 months (from 170 to 135...I'm 5'7").  Fortunately, although weight was never an issue for me (I was blessed with a high metabolism rate) I had experienced some middle-aged weight gain and could afford to lose the 35 pounds (my 'pot belly' disappeared) but at that point, more weight loss would have been unhealthy and dangerous. Post diagnosis, my neurosurgeon urged me to try to eat and gain some weight before my surgery.  I didn't.  Its hard to eat when you have absolutely no appetite and all food tastes like cardboard.  I also felt 'full' after eating just a little bit, even of my heretofore favorite foods. 

Post-surgery, my sense of taste slowly returned.  I retained a small 'numb spot' on one side of my tongue but it didn't really affect my taste sensations.  Granted, not everything tastes exactly the same as it once did.  Sometimes I actually sense a 'sweetness' to foods that aren't sweet at all, but nothing tastes really bad.  Fortunately, I got used to eating small portions and have kept the weight off.  My primary care doctor said that occasionally, when the body experiences trauma, such as brain surgery, hormones are secreted that can affect metabolism.  O.K., doc.  In  my case, they apparently kicked my metabolism back into it's former high rate and although I don't 'diet' or do formal exercises, I am active.  Fortunately, I've been able to keep my weight at about where it was 20 years ago (140).  My wife grumbles about how 'lucky' I am as she dutifully counts her Weight Watchers points every day  We don't talk about weight too often, for obvious reasons.   

I count my (unintended) weight loss as one of the very few positive things to come out of my AN experience and I intend to keep the weight off. 

Jim