ANA Discussion Forum
General Category => AN Issues => Topic started by: beancounter on November 02, 2007, 11:37:19 am
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My MRI saga began with a trip to an ENT due to suddenly losing my ability to taste. I have yet to read anywhere that loss of taste was a reported symptom of AN, and am wondering if any of my friends in ANville experienced a loss of, or a blunted sense of taste as an initial symptom. Thanks, God bless and have a great weekend.
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Beanster-
Try Wikipedia. That's the only place I found anything about change in taste prior to surgery. The medical sites I went to preop didn't mention anything about taste except in terms of possible post op side effects.
Donna
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beancounter228:
For what its worth: I experienced a significant loss of 'taste' pre-surgery, so it was absolutely a symptom for me. So much so that I lost over 30 pounds due to my diminished appetite. Fortunately, I was a good 20 pounds overweight at the time so the loss was not a serious problem. My loss of taste (everything tasted like cardboard) began about 8 months prior to my diagnosis.
Apparently, if the taste fibers of the 7th nerve are affected by the AN, taste can be impacted and loss of appetite is not uncommon. Some AN patients develop a metallic or salty taste, which is problematic. Some only experience this alteration of taste when eating certain foods. It often subsides, but not always.
My loss of taste was practically reversed following surgery. My sense of taste is just about normal, today, 17 months later. Fortunately, although I re-gained some of the lost weight, I've managed to remain at a healthy weight level (22.8 BMI) and plan to stay there.
Jim
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Jim is absolutely right and has completely debunked my theory of the metal head vs fat head craniotomy fill theory. I have researched this too and it has much to do with the pressure on that nerve or swelling of post treatment (radiated or craniotomy).
I think we should start an “AN myths� thread…
Also the amount of hours in surgery you should count that many weeks in recovery is an “old wives tale� ... my surgeon informs me. (I guess at 44 I am part of the old wives – ::) smirk LOL)
The taste thing does improve however I can still not stand the taste of coffee (yet)… with the consumption I used to have gee maybe Starbucks will go bankrupt LOL
I cannot believe I have had 10 weeks with almost no caffeine since surgery…
Gee maybe that is what the post-op headache was all about LOL
Cheers,
4
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I have taste disturbance. I am currently watching and waiting. I have had taste disturbance for months. Things taste like metal sometimes (depending on what I eat.) You are not alone.
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I didn't lose my ability to taste before surgery, but I did lose it post op. My first 3 days in the hospital I couldn't eat anything - due to extreme nausea that no drugs could cure; the docs tried everything. On day 4, I was finally able to eat but the bland diet they insisted on serving me didn't appeal to me at all. My solution was to simply not eat, which got me a visit from the hospital nutritionist/dietician. She told me I could have anything I wanted, but everything I asked for had no taste. Even food from the "outside" had no taste. On day 2, my kids brought me a Hershey bar - one of my few vices - and it sat on my tray table for the entire time I was in the hospital (6 days).
Once I got home, my taste buds were out of whack for about a month; nothing tasted good; nothing tasted "right" to me. Little by little things started to get better, although I had a fairly regular issue with "metallic mouth". Today, approximately 5 months after surgery, I still get a metallic taste in my mouth although I haven't been able to link it to any specific type of food; it just shows up without warning on occasion. One thing is consistent, though. If I eat anything with salt on it, all I taste is the salt. I'm hoping that one of these days, I'll get past that problem. It would be great to be able to eat popcorn and french fries again.
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I am 7 years post-op and have no taste or sensation of half of my tongue.
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Patti, (another “4� ;D)
I am incredibly curious did you have the translab (TL) or the Retrosigmoid (RS) surgery approach. With all the nerve damage I am still awaiting to resolve (granted I am only at 10 ½ weeks) and I still have paralysis in half of my tongue. Coffee and other foods with tannins still taste awful :P . I am wondering if I made the best choice… the old TL vs. the RS debate on a 4cm tumor… will always be questioned by me… being that I deliberated over this all summer long.
4
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leapy, My tumor was 2 cm and the taste problems were persistent for one year. I still get a numb spot flare up on my tongue once in a while, but I coax it away with chocolate and other pleasant familiar tastes.
Immediately post op I had constant tongue pain and numbness. The taste bud variations were a constant annoyance.
I use biotene mouth moisterizing drops and this helps a lot.
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Boppie -
glad your taste issues only lasted 1 year - hopefully I just have 7 months to go :)
I'm using Biotene products for my dry mouth and they are helping a lot. Maybe they're also helping my taste buds and I just didn't realize it.
Jan
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Thanks Boppie
I had never heard of it until you just mentioned Biotene
Here is the first link I goggled AN forumers
http://www.drugstore.com/qxp15434_333181_sespider/biotene/oral_balance_dry_mouth_relief_moisturizing_gel.htm
I tell you folks -the pharmaceutical market is THE place to invest stocks. I better head to Home Depot and pick up yet another medicine cabinet for my bathroom – oy ya ya…
Off to buy more goop – only this time not for the eye or nostrils but the mouth. Does this goop purchasing business ever end? I bet all those neurotologists have stocks in the pharmaceutical companies (tease LOL)
Cheers,
4
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This is not an unusual symptom. I'm 14 months post op trans lab and I still get the metallic taste. When I'm stress, very tired, or just feeling like poop, it's there. Kinda of depressing. I'm Hungarian and my husband is Italian and let me tell you it is all about the food. I took that quote from my 20 yr old son;D
Actually I never know when it's going to sneak up on me. Sometimes I do not know how I survive, because when everything has that taste I hardly eat, but I make up for it when my taste buds return to a some what normal state. I find I have a tendency to really spice it up with fresh garlic, parsley and pepperincino. Thank goodness my husband and sons enjoy seasoning as much as I do.
I drink a lot of water. I seems to dilute the metallic taste. I also suck a lot of mints. Maybe that's to mask the fresh garlic :P All kidding aside, this is a quote from my beloved mother-in-law with her broken English. If I no enjoy my eat I finish. Ma, I agree!!! She's 74 and her family was the town baker back in Italy, so she can cook. You have to be patient and experiment. Eat what you enjoy when you can. Drink your water.
Okay, that my advice on this subject. Did any of the Drs inform anyone about this? Mine didn't. Opp's another oversight I guess.
Anne Marie
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Since GK in July, I've had a subtle switch in taste from preferring sweet things to preferring salty things. Don't know if it's a result of the tumor, the tumor swelling, or the GK. I feel very lucky to not have had any more extensive taste problems -- I come from a long line of Pennsylvania Deutsch ICE CREAM LOVERS, so this taste-preference-switch is sort of odd for me!
Dana
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I've got the metal thing too. Mine waxes and wanes. Last week it was HORRID. This week I barely notice it and all I notice really is the dry mouth. Biotene is good.
Good Luck!
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bean - What I've discovered is that the docs have no idea all the strange symptoms we An'ers can have. I had IBS symptoms that all went away after surgery. My tumor was pressing on my vagus nerve, thus stomach issues. The doctor thought it had no correlation. I disagree.........
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I lost the sense of taste on half of my tongue about 5 months before I was diagnosed. My doctor said he wasn't sure if it would come back or not after surgery, but I figured I'd already lived with it like that for 5 months - not too big a deal. After the surgery, everything tasted like metal - especially anything with tomato or tomato sauce. Arrggghhh.. my beloved pizza tasted like wet cardboard with metal shavings on top!
The metal taste is mostly gone now, but I do have a problem tasting salt. I find myself reaching for the salt shaker, when I'd never done that before the surgery. I just have to season everything to within an inch of it's life - salt, pepper, hot sauce - whatever. And on another strange note, after surgery, I suddenly wanted to eat grapefruit. Odd because I always hated grapefruit. My family still can't get used to me eating it because I couldn't even stand the smell of it before. Now if I could have had them turn off my chocolate sensors while digging around in my brain we'd be in pretty good shape over here!!
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Before my sugery I ate a lot of spices but after my sugery I didn't care for extra seasoning at first. However, my sense of smell returned. I woke up from a 9 hour surgery with a hole in the back of my head, SSD, double vision, facial paralysis and horrible pain on the right side of my body (from laying on it all day) and all I could say to all the nurses and DR's standing around me was I can smell all of you guys. I could smell perfume, BO, bad breath, hair spray and deodorant. It was like my nose got a wake up call and decided to start working again. I must have lost my sense of smell years ago and didn't realize it.
Once I started eating I had to suck on candy for months and didn't care for meat at all. After a couple of months I started using Biotene and that helped greatly. After about a year my taste is back to normal, using regular toothpaste and enjoy all foods again, just need to have a drink nearby because I still have paralysis and my mouth gets very dry.