ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: Soundy on August 22, 2007, 11:05:24 am
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I am not usually a big eater... but since surgery I have been gaining weight... after keeping a
diary of what I was eating for a few days I saw a pattern... I will start out eating what is on my
plate and get part way through and go look for something else.. I cooked a roast one day last
week... ate about half of what was on my plate got up and rummage thru fridge and got salad
stuff and ate a salad ...followed by a little pudding then a little icesream...
thinking about what I was feeling while eating , I realized that I was searching for something that
tasted right... everything is tainted by the metallic/salty taste in my mouth...I wrote myself some
notes and put them around the kitchen...
Nothing tastes right .Eat what you have on your plate. Love Mom
I know that is a bit dorky but it keeps me from pillaging the kitchen for something else... Anyone
with thoughts or ideas on this? I know it isn't a serious problem but if I keep gaining weight it could be ...
was already trying to lose some due to RA in hip and knees..I can feel the pounds ...
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Soundy,
I love your note. :-) I have no feeling on one side of my tongue, so I feel like I need to eat twice as much to get the right amount of taste. lol I was in Weight Watchers before my surgery and we had a note we put on the fridge. It said, "Am I really hungry?" It helps if we think of eating as only a way to fuel our bodies. Unfortunately I think I need a lot of fuel when I see desserts sitting around at my meetings. Good thing I don't go to meetings everyday. I find keeping busy helps me to cut down on my eating. I'm also getting more exercise. Putting on weight after surgery was much easier than trying to take it off.
Good luck to you.
Jean
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In my case no less than 80% of all food simply tasted "off"
Basically human beings are programmed not to eat food that maybe bad
life was pretty miserable as you might guess
The solution was to invest in just about any far eastern sauce I could find
- yes a Roast with sweet chilli was a bit weird
But I could eat it - and the sauce tended to mask the "off" taste
It does work with two provisos
1 Sweet and sour ice cream just wont fly, and
2 dont cook for your friends - not if you want to keep them
Best Regards
Tony
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sweet and sour ice cream does sound a bit off
I have been trying to write down stuff that taste at least OK...
I have learned that extra garlic helps ... keeps people away too... I
don't season whole pots of stuff just add it to my portions
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For some reason I've found (thru my LOVE of chocolate) that the new Snickers with Almonds (mmmmmm) has the most taste of chocolate, outside of dark chocolate, which I have gone from hating (pre surg) to liking (post surg).
I must say, I MISS THE TASTE OF HAMBURGERS & STEAKS - I think this has been the hardest for me (along with wine). You're right Tony, food needs to be seasoned in order to taste anything. Soundy: I'm a garlic officianado, never too much. (BTW: love your artistic son's rendition - looks like another Picasso on the rise!). take care all, Nancy
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I grilled some steaks last night and they smelled great but tasted ugh...
I did spice up some veggies with szechuan sauce and it helped ...the
spiciness of it over rode the metallic taste in my mouth... I have started writing
down what tastes least bad and what tastes the worst... looking for
a pattern... probably overthiking this but can't continuing eating too much in effort
to find something that tastes good ... a friend suggested getting those rice cakes
to fill up on so even if I tried to eat something else my stomach would be full and
couldn't keep grazing
the picture was drawn by my youngest daughter... she drew it before the AN was found
claimed it was me when I didn't feel good... I love the drawing now , but the day
they found the tumor it was eerie... looks kinda squashed where I shrank it for my avatar
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OOPS - Sorry Soundy, not Picasso then, a Freda Kahlo on the rise. Maybe your daughter also has a 6th sense ....
You've got me crying over the 'grilled steaks' - boy would I love to taste steak again !!!
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I think I would be better of if my sense of smell had gone too... I passed
a bakery and it had my moth watering ... bought some warm yeast rolls and
might as well have been eating salted cardboard...
Like the steak the smell was delicious but actually putting in mouth a big
disappointment
You know what bothers me but isn't such a big deal as food???
tooth paste... have went through trying several to find something that doesn't make
me gag...
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Soundy, I know where you are coming from. I have a very short list of what tastes "right". Radishes and cucumbers are now a staple. Vanilla yogurt. We ordered Chinese out last night, and the broccoli LOOKED like broccoli and SMELLED like broccoli, but sure didn't TASTE like broccoli!! OH well, it is like having whole new foods to explore :D But I sure miss my old favorites...
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Food did not taste the same for about 8 months. Sweets seemed to taste the best so of course I ate sweets for the first several months. I could not tolerate wine or any alcohol. However, this past spring (about 10 months out from my surgery) my brother bought me a Blue Moon beer while we were out for a family dinner celebration. That tasted really nice but any other alcohol for the most part does not taste like it use too. Now that I am about 16 months out my mouth has a dry taste every now and then but most foods taste like they use too. I find I don't need to use as much spices as I use too even though I love them! It seems like a slow process but one to look foward too!
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TP
Your right I have put on 10 pounds because of the same problem. I need to do the same .
eve
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How about coffee?Right after my surgery the smell of coffee made so sick.I was always a coffee&tea drinker,but it turned on me.I could not stand to smell it while in the hospital or when I got home from surgery.I even made my husband move the coffee pot to the garage!I'ts has been over a year now ,I can even drink it now.My taste has changed but over all I am happy to keep food in m y mouth when chewing.TLCl
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Tomorrow I will be at my 11-week post-op benchmark...
I still can't stand the taste of coffee. BLAH! (I was a major caramel latte consumer at Starbucks pre-surgery.) I have developed a distaste for any food on the “tannin� list
http://en.wikipedia.org/wiki/Tannin
I have substituted my coffee addiction for Carnation Instant Breakfast drink – so much healthier. (gee maybe that is why I had such a head ache- caffeine withdrawal)
http://www.carnationinstantbreakfast.com/Products/Default.aspx
Just call me your “infomercial� ;D
Cheers,
4
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Hello everyone!
I thought I was the only one with this weird taste with food. I thought it was due to the medication after surgery. All the food that I was craving didn't taste right and now I order or cook the food with extra seasoning. Does anyone know if this will be temporary? Thanks.
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I think I've read that others have gotten their taste back; as for me, I still can't taste most foods - but then again, I still have total right sided facial paralysis.
I hope your taste comes back as it has for others. Take care, Nancy
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Confused taste information is temporary for most AN patients, post treatment.
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Although the real metallic taste has gone away I'm finding that nothing tastes the same as before surgery. I do still have some numbness on the right side of my tongue.
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I have NO numbness; in fact, when I accidentally bite my tongue or cheek or lips because of the paralysis, boy do I feel it. Guess the sensory part of my nerve works, just not the motor part.... weird, huh?
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Sounds perfectly normal to me! It seems like my tongue is numb on the one side, but I woke myself out of a sound sleep the other night when I bit it! Guess it's not as numb as I think it is! Too bad - that really hurt. :-\
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12 weeks tomorrow I can now and “yes - I have some taste improvements�. :) I even had a spot of tea and it was actually palatable. Raw apples taste weird however tonight I managed baked apple pie mmm... chocolate (ok I am back in there ::) ) but coffee blahh :P... grapes – :P :P double bluchhh...
Must be the tannins or something… no wine tasting tours for me this upcoming Thanksgiving weekend
So you are right there are improvements happening there ... and I did not pay much attention until Nancy mentioned this...
Cheers,
4
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Hi 4 - Last week I couldn't get enough apples!! 2 weeks before I didn't have any taste for them (go figure). The funny thing about my taste is I can taste (somewhat) vegetables & fruit, but NOT meat!!! I miss my steak, burgers & frankfurters!!!! Is the universe trying to tell me something? For lunch today I've made broccalli rabe (bitter broccalli, something I hated as a kid!).
Always good thoughts, Nancy
ps: Lori: Isn't that something!!!!
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Hi 4 - Last week I couldn't get enough apples!! 2 weeks before I didn't have any taste for them (go figure). The funny thing about my taste is I can taste (somewhat) vegetables & fruit, but NOT meat!!! I miss my steak, burgers & frankfurters!!!! Is the universe trying to tell me something? For lunch today I've made broccalli rabe (bitter broccalli, something I hated as a kid!).
Always good thoughts, Nancy
ps: Lori: Isn't that something!!!!
I went through the same thing with red grapes. For a few weeks I couldn't get enough of them and now I'm not wanting them at all.
Linda
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Linda - isn't it the funniest thing? I wonder if our bodies NEED the nutrients & make us crave certain foods. I never CRAVE chocolate, it's like Pavlov's dog - I remember the taste & want it again, especially in times of stress.....
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I'm pretty sure my body NEEDS the chocolate! I think it helps ensure the safety and happiness of those around me! ;D
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I'm almost 4 months post op, and my taste is terrible. Mainly a bitter taste that I can't seem to mask. Food tastes ok while I'm chewing, but then right after is the awful taste. I, too, keeping eating to cover it up. I told my doctor and all he said was"interesting". I started to wonder if there isn't another health problem, not from my AN. But the coincidence of it starting after I had surgery seems too much of a stretch. I've tried the dry mouth toothpaste and the zinc tablets and the listerene strips. Some days it really gets to me.
justpens
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justpens,
Nah the taste is all tied into the facial nerve...
I thought it might be how they filled the craniotomy hole (metal heads vs fat heads) but I was proven wrong after reading up on it more. It is tied into the cranial never that control the face and tongue.
Today I had the 3 month follow up MRI with contrast ... talk about metallic taste :P after the contrast injection.
MMMMM the chocolate coated M & M peanuts left over from Halloween seems to be the perfect medicine MMMM post MRI metallic mouth....MMMMM
Quoting you
“ I told my doctor and all he said was "interesting ".�
Well of course he has no idea – being that he has probably never had a craniotomy or a GK zap himself. LOL :D ;D
I was told at my first MRI that I would “not feel a thing� … yet I always do. I swear I can feel it when they are zooming in on that spot between the brainstem and the cerebellum. I also get this weird eye twitching in my AN side (now palsy side) . They know something but just tell us patients, “interesting� …
Did you try the Biotene stuff that someone recommended on another thread? (I think it was boppie)
http://anausa.org/forum/index.php?topic=5131.0
Cheers,
4
P.S. MMMM you should try these M & M MMMMMM’s (no way I could have eaten these 2 months ago- oh these are good! MMMMMMMM :D ;) :)
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Still having taste issues but tongue is no longer numb.... and have a couple spells where the
saliva glands have gone wild and almost drowned me in spit instead of mouth being so dry that
it hurts...so I am hoping more improvement comes along...
as to cravings ..... red grapes... odd since they are one of those things that I can
usually take or leave ... but lately I have to have them.... and granny smith apples...
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Hi Soundy,
I have had the crazy saliva glands too.... and the first time it happened I was in front of my class teaching................ ::) boy was that an experience.... it lasted about 5 - 10 minutes..... It has happened a few times now and I just keep thinking the same thing as you.......... must mean that the nerves are healing up.... but I sure don't want to flood my classroom ;D .
I also had one thing that I craved for about 7 weeks after surgery .....root beer floats.........it was the ONLY thing that tasted the same. I am not going to tell you how many of those I had ( ok I will ...... enough that I probably should have gone to root beer annonomous ). I am over the major crave now so only have one every once in a while.... probably because even though some foods don't taste the same...at least I'm not dealing with the metal taste in my mouth as often.
Margaret
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I think I wanted grapes and the apples because they tasted right...
Driving down the road my daughter gave me a square of a Hershey's bar... it
tasted really bad... some things seem to bring out the metallic taste more...I
am glad I am an odd ball that doesn't particularly like chocolate...
right now dry mouth is a big problem...yesterday , to show my youngest just
how dry it was ,I pinched the corner off a square of toilet paper and put it on my
tongue and it just slid off... you wouldn't think being dry would hurt but it does
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Wow, I haven't had the dry mouth at all...didn't even know that that was something that could come from this 'wonderful AN recovery' experinece. Hope it gets back to normal for you soon.... I think I'd rather have 'gusher saliva' and deal with that.
Margaret
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Boppie had the best suggestion for dry mouth: Biotene mouthwash + it replaces the much needed enzymes in our mouths to prevent bacteria buildup (Lord I sound like a Biotene commercial!). I just picked up 2 bottles at the grocery store - I left my bottle at my mom's. I also use the Oasis spray during the day (I haven't been able to find the Biotene drops - maybe they don't sell them in Florida?).
I've gotten the Listerine breath strips stuck in my mouth & on my lips from the dryness - UGH!
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Hi Nancyann-
Biotene makes a gel, not drops. I had a hard time finding it until I saw that the gel is called "Oral Balance Dry Mouth Moisturizing Gel" and is made by Biotene. The Biotene name appears small on the tube. I buy it at CVS and use it at night. Hope you find it. I live in Vero Beach, just 2 plus hours north of Miami.
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Thanks V - Next time I'm at CVS I'll look it up - yes, I was looking for drops, not a gel ! Nancy
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COFFEE!
I had my first coffee yesterday and actually said “mmmm� instead of “blach!� Mind you it was doctored up in the form of a Starbuck's caramel latte – but oh it was good.
3 months+ post op and some of my taste buds are now blooming again. Now grapes and anything made of grapes... still – “double blach?�
Do we ever regain ALL of our normal taste buds we had pre-surgery?
4
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Hey 4 - It's getting better - I bought those Jello puddings - & I could taste the chocolate - YEAH for me!!!!!! & I notice the metallic taste has almost gone away ! YEAH FOR ME AGAIN !!!!! Haven't tried a nice juicy steak yet, what with the mouth issues right now, but you just wait - when my mouth is healed I'm cooking up a PORTERHOUSE !!!!! (Hope I can taste it !)
Always good thoughts, Nancy
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I have some biotene Oral Balance Dry Mouth Moisturizer liquid...it helps but tends to make me
nauseated... I don't know if it is the feel of it or taste (it doesn't taste bad just different ) or
something in it ...I suspect something in it that doesn't set well with me because the nausea
comes about 10 -15 minutes after use
I have become a sniffer of food and just eat because I have too... last night I had a stopped up head...
I am thinking from weather...last week we didn't get out of low forties and had ice on windshields
in the morning ... then Friday it was warmer and yesterday at one point was 78* on my porch...
I have had sinus problems when seasons change before surgery... with the stuffy head taste
became worse... it seems like anything that causes pressure in my head increases symptoms I have ...
be it taste disturbance or head ache
did get a gift of homemade salsa from a friend and could taste it ...
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Taste was the first and biggest issue after sugery.(I didn't know what else I was going to have to deal with). I thought it was the hospital food -- then I came home and tried eating nachos - nada on the nachos. It took over a month, but I'm finally getting my taste back -- sweets are the tastiest -- especially ice cream. Chips don't taste so much like cardboard anymore. I was almost promised pre-op that I would lose my taste. Question for everyone -- for those who have regained your facial movement -- was your regaining of taste linked to that?
David
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Welcome David,
The facial nerve is part of the same nerve as taste (saliva) i.e. Cranial nerve VII
This explains the cranial nerves
http://en.wikipedia.org/wiki/Cranial_nerve
My taste returned before the facial nerve movement. (Everything but sweets tasted dreadful right after surgery… but has improved tenfold over the last 5 + months)
I still do not like the taste of grapes and apples. 50% of my facial nerve muscles are now working (I had 0 % movement just after surgery) … and 90 % of my normal tastes have returned. I love coffee – but for 3 months I thought it tasted repulsive. Now I so enjy my morning latte. :)
It is hard to be a ‘patient’ patient – I know. I too was in performing arts and this facial palsy is challenging. Many of the facial exercises, one did in drama class, will be helpful once the movement starts up.
Hang in there. It DOES get better with time and healing.
Cheers,
4
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My facial problem was extremely brief, two months at most. I only had late onset weakness of the eye, lip, and eyebrow arch. Oddly the taste and tongue were my bigger issues. During the first year post op I posted often about weird tastes and dry mouth. I could usually get a true taste sensation from chocolate during that time. After the numb tongue went away I still had the taste problem. By one year I recall that I was back to normal with taste issues. No two ANs are the same, as we say.
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Hi 4
Thank you for the input. Right now I'm obviously looking for any sign of encouragement. And if taste and facial nerves are linked, I have some assurance. My patience problems come from expectations. While still in the hospital, I was assured by the surgeons that I would back to normal in two months. After a month or so when I saw no improvement, I became concerned. I paid a visit to the clinics internist who informed me now that it could take a year. That was quite a blow. I was alone with no one to turn to for advice or direction. That was before I discovered all of you. I don't feel alone anymore. Thank you for your support.
David
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David,
My follow up physician told me that Bell’s Palsy recovery can take from 3 months to 3 years (“years??!!� – I gasped :o :( :-\) . At 3 months and 5 days (not that I was counting or anything ;)) I had some movement… a mm on my upper lip.
It is recommended not to message or to do facial retraining exercises until signs of movement start up… as it can cause unnatural nerve growth such as synkinesis.
http://www.enotes.com/neurological-disorders-encyclopedia/facial-synkinesis
Also avoid chewing gum to avoid developing asymmetry in the facial muscles.
I highly recommend this inexpensive little booklet.
The Facial Nerve and Acoustic Neuroma: Possible Damage and Rehabilitation (AN4)
Tips and information for patients who have facial weakness or paralysis after treatment for acoustic neuroma. Includes an explanation of the facial grading system and some exercises that can be performed at home to improve facial tone. Updated: February 2007
Price: $2.00
https://secure.baxinternet.com/~anausa/for_sale.html
Here is a good website to go over.
http://www.bellspalsy.ws/
Know that you do not have to go through this alone and there are others here for you. :)
There are various locations that hold support group meetings too. In hindsight I should have become a member of the ANA before the surgery… as they inform me of where and when the next meeting is in my area.
Keep moving forward!
Cheers,
4
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7 months and 3 days later I am still having taste issues... the dryness is gone but still have the
metallic taste in my mouth but have figured out what to avoid eating
I am having some twitching in the outside corner of my right eyelid that the doctor is just
watching ... going in tomorrow to have facial nerves rechecked ... have another hearing test on
working ear Feb 19th and kinda worried me that he wanted to look at face now instead of waiting
til then...
as for time line ... if the man says one more time for me not to worry too much til a year is
up I may deck him
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Hi 4
Thank you for the leads. I will certainly check into them. And thanks for the advice on the exercises. I didn't know that and I've been doing some as it is. I think I read it somewhere in the stack of things I received from the hospital that I should be exercising. I think I'm just going to let things be for awhile.
David
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It has been awhile since last post but I also am still having the eating problem. Except cholesterol is up and trigliserites. Just because of trying to find something that taste good and its any thing with allot of salt, fried, or sugar. 3 years since post op and bad sore taste. Brushing my teeth every time I eat or to cut the bad taste. I did get the dry mouth tooth paste & mouth wash it does work some what.
eve
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Nancy,
I though you just went on got is called a 4x4 last year for you facial nerves . how is that going?
eve
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Soundy,
I have not tried the tissue test.
After 3 years out I wake up with my tongue
stuck to the pallet of my mouth.
eve
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I always have mints on hand and that helps me deal with the bad taste in my mouth. I'm almost two years post-op and periodically my taste goes. When I was on prednisone a month ago my taste was completely off. Everything tasted salty and I love salt!
Hang in there it does get better.
Anne Marie
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I didn’t want to start a new topic. I just wanted to make a statement.
It has been 3 years 2 months since surgery , and I have noticed the past week or two that I am not having to move my food from the left side to the right side of my mouth because the left side was not working right so I could chew. :o I have also noticed the past week that I do not have the bad taste in my mouth like I use to ( metallic taste ) just very slight. It brought to mine today I have not suffered from dry mouth either and I don’t know when that started. I am not having to use eye drops just once in about 2 weeks or so.
Yes !!!!! So healing is on its way. Thank you Lord!!! ;D
eve
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WHOOHOO ! ! ! Great news Eve ! It's wonderful to hear of continued improvements.... Nancy
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Yes indeed- GREAT news Eve!
Daisy Head Mazy