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Author Topic: Awful Taste  (Read 4128 times)

JohnnyDiaz

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Awful Taste
« on: December 22, 2008, 10:03:45 pm »
I am a newbie and had my surgery 2 months ago. About 2 days ago I started having this awful taste in my mouth sort of like licking rust (mostly just the tip of my tongue). I did have the metallic taste but not bad right after surgery.

I spoke to my dentist and he said that it probably is not some old dental work.  Has anyone else had this issue?
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Diagnosed 6/08 - 2.5 cm Left AN
9.5hr surgery 10/7/08 w/Dr. Chandler and Dr. Green Baptist Hospital - Jax, Fl
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yardtick

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Re: Awful Taste
« Reply #1 on: December 23, 2008, 09:54:13 am »
The awful taste or metallic taste is a very common after surgery.  It takes awhile for it to literally disappear.  I sucked a lot of mints for many, many months and than all of a sudden that metallic taste was gone. 

I was so devastated after surgery because I could not drink wine, yuck the taste was just so terrible.  My husband is Italian and he makes several award winning wines and I couldn't enjoy any of it.  Patience, patience and more patience, now I drink wine after more than two years post op.

I still suck a lot of mints today.  I find when my mouth gets dry and I have just a hint of that metalliciness.  Is that a word?  Well it is now!!  I carry mints in all of my coat pockets and purses.

Anne Marie
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cherrypiper

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Re: Awful Taste
« Reply #2 on: December 23, 2008, 01:27:40 pm »
post op taste yes.........from all the stuff they give us i would assume.........

Months later? only every once in awhile for me.......now the steroids they gave me for healing sure did that  metal taste.....

and i just had to re take some for a thyroid potentila problem and bingo back it came........

maybe talk with Dr. about it instead of dentist??
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Jim Scott

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Re: Awful Taste
« Reply #3 on: December 23, 2008, 05:28:41 pm »
Johnny:

Although the dreaded 'metallic' taste is fairly common in post-operative AN patients, having it emerge two months after the surgery is not so common.  Not being a physician, I would have to guess that this phenomena is triggered by the nerve's healing process.  I would certainly make a call to my doctor for some clarification although I doubt there is any remedy except the usual one: time.  It should pass, eventually.   

Jim
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mk

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Re: Awful Taste
« Reply #4 on: December 23, 2008, 06:23:06 pm »
The metallic taste is due to the trigeminal nerve acting up. This is common pre- and post-treatment, no matter what method (surgery or radiation). However it is strange that your symptoms have worsened 2 months post op - wouldn't hurt to mention it to your doctors.

Marianna
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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.

JohnnyDiaz

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Re: Awful Taste
« Reply #5 on: December 23, 2008, 08:04:16 pm »
Called the Doc today and spoke to the RN and she said that it was common to have this post op. I have an appt early January and will bring it up to during my doctor visit. It really is a bummer since it makes my diet pepsi taste awful. Thanks to all of you who post....
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Diagnosed 6/08 - 2.5 cm Left AN
9.5hr surgery 10/7/08 w/Dr. Chandler and Dr. Green Baptist Hospital - Jax, Fl
Post Op Complications - Additional Surgeries 10/12 & 10/13
SSD on Left
7 months later I feel great!!!

Pooter

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Re: Awful Taste
« Reply #6 on: December 23, 2008, 09:31:00 pm »
As an aside, are you on any medications?  I know that when I was on "diamox" (that ultimately landed me in the hospital, but that's a different topic altogether), it made everything taste bad.  Coke tasted flat.  Everything was just a bit off while on it.  Just a thought of the cause.

Regards,

Brian
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NE Farmwife

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Re: Awful Taste
« Reply #7 on: December 23, 2008, 10:59:07 pm »
I don't seem to have much taste these past two months (occurred about a month before my diagnosis).  I am scheduled to have Cyberknife at Stanford in January and I am wondering if the lack of taste will get better after CK.  Dr. Chang had mentioned on the phone consultation that whatever symptoms you have now, you will probably have to learn to live with.  Has anyone had that experience with lack of taste before treatment?  I would hate to spend the rest of my life wishing that I could taste something.  One would think that the other side of my mouth would still taste, but it doesn't seem to.  Any advice would be appreciated.
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JohnnyDiaz

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Re: Awful Taste
« Reply #8 on: December 24, 2008, 08:19:52 am »
Pooter ...No Medications for the last 3 or 4 weeks. Prior to that I was just on Motrin since I wanted to get off of the percocet as fast as possible.

NE Farmwife... I did not have any taste symptoms prior to surgery. Mine were just loss of hearing (left side) and weird eye shakes (what I call them) where the whole room would shift to the right then the left super fast (I have not heard of anyone else with that). Sometimes a little tingle above the left side of my lips.

From what I have learned everyone is different in their symptoms and mine after my procedure all have gone except for my SSD on my left ear. Thanks everyone for sharing...
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Diagnosed 6/08 - 2.5 cm Left AN
9.5hr surgery 10/7/08 w/Dr. Chandler and Dr. Green Baptist Hospital - Jax, Fl
Post Op Complications - Additional Surgeries 10/12 & 10/13
SSD on Left
7 months later I feel great!!!

mk

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Re: Awful Taste
« Reply #9 on: December 24, 2008, 09:06:58 am »
Quote from: NE Farmwife on December 23, 2008, 10:59:07 pm
I don't seem to have much taste these past two months (occurred about a month before my diagnosis).  I am scheduled to have Cyberknife at Stanford in January and I am wondering if the lack of taste will get better after CK.  Dr. Chang had mentioned on the phone consultation that whatever symptoms you have now, you will probably have to learn to live with.  Has anyone had that experience with lack of taste before treatment?  I would hate to spend the rest of my life wishing that I could taste something.  One would think that the other side of my mouth would still taste, but it doesn't seem to.  Any advice would be appreciated.

Altered taste (sort of metallic) was my presenting symptom. It felt like my tongue had been burned. Sweet and salty tasted particularly bad. This is a result of the AN impinging on the trigeminal nerve at its root entry to the brain stem. Since with radiation the AN is not removed, Dr. Chang is correct that these kinds of symptoms will likely remain.
I am now 8 months post GK. During the  last month I have been noticing some improvement in taste. I tried my  daughter's chocolate pudding the other day, which previously tasted awful, and the bad taste isn't there anymore. I am not sure if it's a real improvement, or that I am more adjusted to it now, but maybe there is hope  ;D.

Marianna
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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.

Kit W

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Re: Awful Taste
« Reply #10 on: December 24, 2008, 10:28:45 am »
JohnnyDiaz,

I don't remember having the 'metallic' taste but I do remember before I had a seizure at home and woke up in hospital to be told I had an AN about 5+cm in size. I had this awful taste in my mouth which over time got worse and worse to the point that anything I ate tasted bland and had the most awful taste. It turns out that I had Cerebral Fluid leaking into my mouth caused by the size of my AN and the pressure it was creating inside my skull. The right side of my face inside and out plus the right side of my tongue were also numb.

The first operation I had was to put a drain into skull to relieve the pressure then three days later I had an operation to remove 99% of my AN. I had all the feeling in the right side of my face return straight away and some in the right side of my tongue. Eventually all the feeling returned to the right side of my tongue completely and my sense of taste has returned to normal.

I think that there may be an 'advantage' to having surgery as far as 'things' returning to as near normal as possible because the 'AN' has been removed and the impression I get from read some of the posts on this site is that having CK may mean you still have the same symptoms after treatment as you had before.

I still have partial double vision which which is improving very slowly and I am permanently deaf in my right ear now because Dr Tariq Javed, who did my operations had cut the auditory/balance nerve which he said he may have to do during the operation. I was mostly deaf in my right ear by then so I said I wasn't concerned about him cutting the nerve.

I hope all goes well for you.

Kit W
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MAlegant

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Re: Awful Taste
« Reply #11 on: December 26, 2008, 08:47:25 am »
Hey JohnnyDiaz,
Sounds perfectly normal and (like Marianna said) a trigeminal thing.  I had this symptom about a month ago and it lasted for a couple of weeks, so it was over 4 months post-op!  It should go away (mine did). 
Marci
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3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

rosalie

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Re: Awful Taste
« Reply #12 on: December 26, 2008, 09:25:02 am »
JohnnyDiaz,
I had surgery about 6 months ago and had the awful metallic taste for several months.  After a while you get used to the strange taste.  It seems like one day I was eating something and I noticed that it tasted really good, like it should.  I still can't drink anything that is carbonated without it tasting weird though. Hopefully yours won't last too long.
Rosalie
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leapyrtwins

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Re: Awful Taste
« Reply #13 on: December 26, 2008, 09:43:36 am »
As others have said, metallic mouth and out-of-whack taste buds are very common post op.

Someone recommended zinc to me and I started taking it.  Eventually the metallic taste went away and my taste buds went back to normal.  I don't know if that can be attributed to the zinc, or if it was just a matter of time healing all things.  Either way the zinc won't hurt and it just might help.

Jan
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Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
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Lainie181818

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Re: Awful Taste
« Reply #14 on: December 27, 2008, 12:11:37 pm »
I had the metallic taste for over 1 year. I lost about 20lb, the only thing I could taste was CHOCOLATE. I guess there are worse things than that. I should probaby write a book called "The chocolate diet". When my taste returned, everythihng tasted fantastic, like it was the first time I had ever eaten. Unfortunately the 20lb moved back in and brought a couple of friends with it. So I guess it is back to the Cadbury bars.
Lainie
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