Can you help me with this??

[Jwh]

Hi,

Ok, I know there has been a quite a few posts on taste issues after surgery.  Is mine different from others?  I know I've read a lot of the metallic taste which I did have after the first surgery but not this time.  Lately, I've noticed when I move my tongue across my teeth, I get a bitter taste?  Can this be related to the surgery or is this something different?  I've tilted my head down to check for CSF leak - nothing thank god!  Thought maybe taste could be from that.. 

Am I crazy??

Jen

[leapyrtwins]

Jen -

I'm one of those who mentioned metallic mouth, but I should have elaborated a little.

Originally post op, before I had metallic mouth, I had taste bud "issues".  Everything I ate tasted horrible and "out of whack".  I recall trying popcorn and all I could taste was intense salt.  YUCK!!!    The worst part was chocolate tasted terrible 

Somewhere along the line I also developed metallic mouth - where everything actually had a metal or metallic taste to it.

A colleague recommend I take zinc and said it would solve the taste bud and the metallic mouth issues. 

Both of these lovely issues left me in time (I still don't know if I can attribute that to the zinc or not) and I am none the worse for wear.  In fact, it was quite nice when everything tasted strange because I stopped eating a lot of stuff and lost some considerable weight.  Alas, once my taste buds returned to normal that went away 

So, hang in there; you are definitely not crazy!  This is normal and it should get better.  Patience, patience, patience.

Jan

[Pembo]

No metallic mouth, but I did notice a difference. Things are a bit more bland, I always seem to add more salt than my dh.

[kenneth_k]

Hi Jen.

You are not crazy at all. This taste disorder apparantly is more common than it would appear reading most articles on the web.
I am personally close to desperate these days, because the taste is just terrible

My doctor told me, that most likely, this is only temporary (I certainly hope it's peaking now). But he had no advice for dealing with it at all.

I also heard about zinc as treatment to dysgeusia (try Wikipedia), but I'm not sure it is all that helpfull if it's the facial nerve acting up.

As Jan says - patience.

Kenneth

[Jwh]

Thanks for your responses! 

Can it be from the facial nerve acting up??  Didn't know that could happen after surgery??  This could make sense as a few months before my surgery and now I've been experiencing a bruising sensation (feeling) in my check, nose and eyebrow when I touch it.  Trigeminal nerve maybe?  Right now no stabbing pains although I had that  during the summer with facial spasms and eye pain.  Can an AN cause that and post surgery.  Next time I go to the surgeon, I'll ask him about it.

Thanks for all of your wisdom and knowledge!!

Jen

[Jim Scott]

Hi, Jen:

Unfortunately, the 7th cranial nerve (that affects taste) is sometimes compromised by the AN and/or the surgery used to remove the tumor.  To the best of my knowledge, and I'm not a doctor, the resulting alteration of the sense of taste usually subsides in time but in rare cases, it can be permanent. 

I suffered severe loss of taste prior to my diagnosis and surgery, resulting in a 30+ pound weight loss, which was about all I could afford to lose and remain healthy.  Within a few days of my surgery, my normal sense of taste returned.  I'm happy to report that I've managed to keep my weight down to where it should be because I got out of the habit of having large food portions at dinner and snacking between meals.  I still have a very slight 'taste issue' with a tiny part of my tongue that was affected by the AN.  Ironically, this has the effect of actually sharpening my sense of taste and makes food taste better.  Go figure.      

I believe that your planned consult with your surgeon may answer your question with more credibility than a mere AN patient can offer.  However, I doubt there is any real treatment to alleviate this problem, other than the time it takes the nerve to heal. 

Jim

[mk]

Metallic taste and sensation similar to a burned tongue are usually due to damage to the trigeminal, or fifth nerve. These symptoms are common both pretreatment, if the AN is large enough to press on the trigeminal nerve, and post-treatment, due to damage to the nerve.
I found that avoiding salty and very sugary foods helps.
There is a nerve that controlls taste (I don't remember which, maybe 11th or 12th), but due to its location it is unlikely that it can be affected by an AN.

Marianna

[jtd71465]

Jen-

You should send an e-mail to Dr Roland, I'm sure he will respond in about 20 minutes.

Joe-

[JohnnyDiaz]

I had recently posted that after my metallic taste in mouth (after surgery), I began to have this awful rust taste.. I know you are probably thinking how do you know what rust tastes like? I got a little nervous and spoke to my Dr. He said that it was probably a nerve that was affecting my taste and told me not to worry. After about 3 weeks it went away, but like you - I  now feel like the tip of my tongue has a bitter taste. I can deal with it as long as it does not make my diet pepsi's taste different.

[arkansasfarmgirl]

I can't eat Raisin Bran Crunch or Cocoa Crispies anymore because they taste too salty.  I'm a cereal-holic and those were 2 of my faves so that sucks.     Other than that, I haven't had any problems with my taste, except I do have a metallic taste when I press on the left side.

[lacey7]

I haven't had a pizza in over 7 months....and I loved pizza!!  I think I made the pizzeria go out of business!!  ha.
I told the doctor he took my "pizza sucker" out...and he said "is that bad or good"?  LOL.
Lacey

[Dog Lover]

In fact, it was quite nice when everything tasted strange because I stopped eating a lot of stuff and lost some considerable weight.  Alas, once my taste buds returned to normal that went away 

LOL. That was SO ME! Everything tasted HORRIBLE for me for a while and I lost a nice amount of weight. Unfortunately sugar was the first taste that came back and tasted like it should. So much for keeping the weight off.

I did ask my one of my surgeons about it. She said that it was common and that the nerve that affects the taste was manipulated during the surgery and it would get better. It did, but it took a few months.

Cathy

[cherrypiper]

well it depends on what devix=ces they had in your mouth or thoat areas during surgery. my metal taste was definitely stroid  related. the shots of steroids they gave me veven had me smelling metals.

but they are necessary for medical healing reasons for the skull.

also if you had any problems like i did with blodd clotting, some of those meds made even adequate tastes in the hospital food and drinks unusable,,,,,,,,, it wasnt the stuff they were giving me food wise it was the meds. about 2 weeks later removed from steroids and a few others taste started working its way back to normal.''

so i guess it took 3 months or so for me.