Question about ability to taste

[Donna R]

Hi...I just had a question..I have had such a problem with taste, the AN side of my tongue feels kind of "numb" but if I bite my tongue, I can certainly feel it!  Things just don't taste right to me, some foods are okay, but some things either I can't taste, or they taste terrible!  Also, I feel so "parched" all of the time, I am constantly drinking water!  Has anyone experienced this, and does taste come back after surgery?  Thanks!

--Donna R

[epodjn]

I'm 5 months out and I have the same thing and it hasn't changed. Some things taste ok but some are gross. You would think I would lose weight but it doesn't seem to help, haha. I am also having a problem with a bitter taste in my mouth. I think it might be an infected tooth but since that side is numb I don't feel any pain. I'm going to the dentist in a few minutes so I'll let you know what he says. I'm not sure how this dentist thing will work since i can't open my mouth very well.

[kmancini]

It has been 13 months since surgery and I have the same thing.  I have a salty taste most of the time then other times it is just plain yucky tasting.  My mouth is always dry. I keep gaining weight because I crave sugar to counter act the salt.  When does it go away?

Karen

[MAlegant]

Hi,
Yes, I also have taste issues as well as numb tongue, etc.  It seems to have really improved but still has a long way to go.  I am trying to be patient.....
Marci

[DLM4me]

I'm five weeks out and it's exactly the same for me.  My mouth is always parched, most foods taste funny or don't taste like anything at all, and some foods gross me out even thinking about eating them.  (And I'm vegetarian, so it's not like we're talking about dead animal flesh.)  I remember in the hospital, pepper--of all things!--tasted so odd that after a couple tries I stopped using it altogether.  (Still haven't tried it again.)  And I absolutely hate the numbness in my mouth, tongue, face, etc.  I'm hoping this hurries up and goes away!

[28Lisa]

Its been 20 months for me and I stilll have the numbness on my AN side of my tongue and face, foods like peanuts and chocolate are totally "nasty" now.....lol  Coke is good though, Im still hoping things will change but like they sat its a slow process

[kenneth_k]

Hi everyone.

Taste disorders after surgery (and even before) is not all that uncommon. I'm 8 months out and still have a metallic taste. I am getting used to it, but I couldn't tell the difference between a 2$ red wine or a 200$ red wine.

Nevertheless, I read somewhere that the issue will resolve itself in a majority of cases (more than 90%).

I guess we just have to be patient..... Again

Going to Greece on Friday to have the taste buds calibrated in garlic and Greek specialities. May some Ouzo will reset the system.

Regards, Kenneth

[Donna R]

Thank you for all of your replies...it's a very annoying thing, isn't it?..and what gets me is that my surgery isn't for another month!  I hope it eventually gets better for all of us!!!

--Donna R

[Donna R]

...and Kenneth, have a great time in Greece!

--Donna R

[epodjn]

I'm back from the dentist. No cavities, no infection, no nothing. He did bite wing x-rays and then a panoramic x-ray, trying to find what might be causing the horrible taste. His final conclussion was it was caused by the nerves not working right. For any of you experiencing the bad taste his hint was this. If you have an infection you usually have a bad smell along with the bad taste. If it's just the taste it's mostly just your nerve problems and not an infection. At least it's good to know there is not real problem. It was also a real moral booster to have him say he thinks it's a good sign that something is starting to work, even though it's not quite right. He was so positive and upbeat it was worth the visit. Don't you just love happy, positive people!! I just wish my nerosurgeon was one of them. But I'm going to a new doc on the 22 of June. I will not tolerate negative doctors anymore.

[mk]

The "burnt" tongue filling and odd metallic like test are because of the trigeminal nerve beeing affected by the AN. This is the nerve controlling feeling and obviously, if the feeling in the tongue is altered, all these strange sensations can occur.

In time I have learned to avoid the foods that taste worse. For me it is the very salty and very sugary foods, which are unhealthy anyway, so avoiding them can only be a good thing 

My understanding is that this may or may not go away with surgery, depending on the decompression and healing of the nerve.

Marianna

[Jim Scott]

Donna ~

I guess my case is an anomaly.  I pretty much lost my sense of taste in the six months prior to my diagnosis and subsequent surgery.  Everything tasted like cardboard to me, whether it was sweet, salty, spicy, whatever.  My appetite drastically diminished to the point where I was hardly eating and because of that I lost over 30 (unneeded) pounds.  Later, I jokingly referred to it as "The AN Diet".  My wife, who is struggling to lose weight, was not amused.

Within a few days of my AN partial resection my sense of taste returned.  Fortunately, everything tasted pretty much the same as it always had and I could enjoy my favorite foods again, but now, in moderation.  In fact, I believe my sense of taste is sharper than it ever was, but that may just be a perception on my part and I don't see any way to prove it.  3 months after my surgery, I underwent 26 (planned) FSR treatments.  They had no effect on my sense of taste, for better or worse.  I do have a small 'numb' spot on the left (AN) side of my tongue but other than that, I'm fine.  I assumed the affected nerves were able to rebound once the AN was reduced in size.  I guess this just shows how unpredictable acousic neuromas really are and why no one can guarantee anyone's treatment outcome, be it surgery or radiation.  I trust your sense of taste will return to normal, post-op. 

Jim

[DLM4me]

epodjn, what was it like at the dentist?  I'm way overdue for a routine visit, but with my face paralyzed [on the right] and the residual pain, which combine to make it VERY difficult to open my mouth, I just don't see how it's even possible.

Like Jim my appetite has dramatically decreased.  I don't know if it's because food just doesn't appeal to me any more due to the taste disturbances, or what, but I just don't feel like eating.  I'm forcing myself to choke down 600 or 800 calories a day, but it's a real struggle.

[klangel]

oh yes donna, it took me over a year and a half to taste things right. everything kind of tasted like metallic dirt. i think it was from the anesthesia. my surgery was 18 and a half hours. how long were you under? it did get back to normal though but that whole side of my head is still semi numb. hopefully this helps. hope you get back to tasting right tomorrow!     kerri

[JudyT]

Hi all........I suffer from these same issues. Facial pain,lack of taste,numbness, tingling, sunburned sensation. I saw doctor yesterday and she said I have trigeminal neuralgia and some neuropathy. Not much I can do. I am 4 years out from CK.
Judy