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ElderDruid
07-08-2003, 06:05 PM
I am 32 years old and had a tonsillectomy 2 weeks ago. My sense of taste is pretty poor (foods taste bland), and I'm wondering if this is common? How long before my taste (hopefully) returns to normal? Thanks!

tvierra
07-11-2003, 01:26 PM
I'm glad to hear someone else is going through that. I had the procedure done two years ago. My taste buds are finally starting to come back. Hang in there.

ElderDruid
07-11-2003, 01:44 PM
Thanks for the "encouragement", but I seriously hope this is a joke.

orion
07-13-2003, 09:54 PM
Your taste is strongly influenced by your nose. Deep inside your nose is a small spot that governs your smell. If that spot is damaged in anyway, like the blood supply is cut or some debri from your operation got up your nose then you can't taste very well. Normally that will return often after 6 months or so. You had lots of damage to tissue when you had your operation so probably the blood supply was damaged to the smell area. Chances are it will return but it may take months.

In my case, it took 3 months before I could taste anything, and 6 before I would say it was normal.



[This message has been edited by orion (edited 07-14-2003).]

ElderDruid
07-14-2003, 06:03 AM
Thanks Orion. However, my sense of smell seems unaffected. It's my taste buds that seem to be damaged in some way. I'm thinking that maybe the Vioxx I took had something to do with it? Or the antibiotics? Or the morphine?

nevadamistermom
04-27-2005, 10:29 PM
I had a tonsillectomy 9 months ago and my sense of taste has still not come back. Specifically, I have lost most of my sweet sensation...the others seems to work fine. I also have difficulty swallowing...almost like nerve damage...not soreness. And a constant bitter taste in the back of my throat. It was somewhat encouraging to see that it took up to 2 years for others to get full functioning back. Helps me not to lose hope.

dbaum
04-28-2005, 10:37 AM
Hey Nevada--You may find some information and additional help over at the the Adult Tonsillectomy & Adenoidectomy Surgery - Part 5. Take a look at this thread, it's very active and there are several of us at various stages of post-op. Personally I am at day 16 and my taste is fine but others have reported problems similar to yours.

nevadamistermom
04-28-2005, 09:41 PM
I'm curious to know how long it took tvierra to get better, what your surgeon had to say about this, and whether you also had swallowing difficulties. My surgeon has been acting as though this is all very abnormal, but the more I read, the more it seems like many adults experience this. I also have trouble swallowing in addition to loss of my sweet sensations...the others (bitter, sour, salty) seem to work OK...but not sweet. And, I have a sort of constant bitter taste in the back of my throat. It has been 10 months. I'm looking for some encouragement that this is not permanent because it is pretty crummy losing the joy of food and eating in your life. I've lost about 20 lbs, but I don't recommend this as an appetite control method. Kind of like scorched earth to control weeds.

Ariane05
07-31-2005, 05:31 PM
Hi all,

It is good to know that others are going through this. I was starting to feel like I was going crazy. I had my tonsils out in April and I have been having problems tasting anything ever since. My ENT examined my nose and throat and said the problem was my nose was severely swollen from allergies and it was affecting my taste. He put me on Nasonex and I've been on it for almost 2 months now and I still can't taste anything. For awhile I thought it was helping, I seemed to be able to taste some things to a small degree once in a while, but for the last couple of weeks I can't taste anything at all. It is seriously starting to depress me and I don't know what to do. I do hope it will come back eventually, but for now this really sucks.

Charlatan
08-01-2005, 04:33 AM
Funny how everyone's now speaking up about this post-tonsillectomy problem, as no one seemed to post about it before I had mine out, in April. Seems to be quite a common problem... long lasting problem.

Hey Ariane, I can identify with you, since we had our operations at the same time. I thought you had fully recovered, though. :(

Nevada.. I can also identify with you, because I have that bitter taste at the back of my throat, too. I also cannot really taste sweet things and also get a metallic taste often.

It's a long shot, but if anyone's reading this and had this taste problem after a tonsillectomy and were like it for a LONG period of time and it DID finally return to normal, please let us know, to keep our hopes up!
It's been 4 months now for me.

Can anybody else not taste chocolate? I find that the most depressing part.

nevadamistermom
08-01-2005, 10:25 AM
My ENT told me that part of the surgery is a device that immobilizes the tongue...sort of an extreme tongue depresser device. This can create trauma to the nerves...sort of like the tongue falling asleep. He told me that nerves typically heal at the rate of 1mm per day, and that translates to about 2 months for typical return of normal taste functioning. He can't explain why mine has not returned after 12 months...nor the problems I have swallowing (difficulting pushing down mushy foods...not painful, just gets sort of stuck). I am really hoping someone who took longer than 12 months to get their taste back will write in...to give me some hope. I too have lost my sweet receptors and chocolate tastes horrible...along with most anything that should have sweet associated with it...like ice cream. I still have a lingering bitter taste. There have been suggestions from my ENT that maybe it is "in my head" but that is definitely not the case. What is really weird is that the first 1-3 bites of sweet stuff tastes totally normal. Then it is almost like the nerve gets "fatigued" and the taste becomes blunted. So I know it is not in my head. Things taste normal initially...then quickly go south. It is maddening to have the medical establishment be so clueless about this issue...and to not advise people in advance that it is a relatively common after-effect of tonsillectomy in adults. I have talked to about 10 adults and all of them reported this after their surgery...although their's did not linger as long as mine.

Ariane05
08-01-2005, 10:46 AM
Hi Charlatan! Did your palatte problem get any better? When I had a good day and could partially taste some thngs, chocolate was one thing that never tasted right. I really miss it.

nevadamistermom, I had that same exact thing you describe when I had some taste. The first two or three bites of food would taste fine and then I could taste nothing. I've also experienced a bitter metallic taste in the back of my mouth on and off.

The thing I don't understand is why the ENT's act like it is a very unusual problem when it apparently isn't. I've had year-round allergies for over half my life and it has never affected my taste before so I have a hard time believing it suddenly came to that right after the tonsillectomy. I wish they would come out and admit it does happen to some people and usally comes back in x amount of time. But mine treated me like it was all in my head a bit as well.

Charlatan
08-01-2005, 01:31 PM
Hi!
In fairness, I was kind of warned about this happening at my pre-op assessment. The Dr warned there may be a lack of taste for a short while after the surgery, but that it soon rights itself. But he DID say in some cases, taste is permanently damaged.. and when I looked scared then, he laughed and said that's very rare and that I'll be fine. But seems everyone here's describing the same symptoms.. dry throat/lack of taste/bitter metallic taste/unable to taste sweet things... so we can't all be imagining it.
I'm just now eating Jelly Bellies and whilst I can taste the flavours, there's no sweetness at all.
The sweet part of the tongue is on the tip, so I guess the clamp must really be harsh there, during the operation, then.

Ariane!
Yes, my palate improved a lot. Did yours? :)
The left side is still dragged a lot lower down, due to scar tissue there, but luckily my uvula shrank up to what must be normal size, so it no longer trails on my tongue. lol
Hope you're doing well. All the best to you.

peteyby
08-01-2005, 06:09 PM
You can add me to the list as well! Same problems as everyone else. I am 31, had my surgery on June 30th. I taste my food for the first bite or two and then its gone. Sweets are a no-no and chocolate is inedible. It seems like my taste wants to skew everything to the bitter side. And yes, when I am not eating I get that metallic taste in the back of my mouth, plus my tongue gets really dry sometimes. It is nice to know that others have experienced the same thing, although it sucks for all of us!!!

I was just wondering what method your doctor used to the surgery. I know for me it was the old fashioned knife w/ electrocaurterization (hope the spelling is at least close).

I too encourage others who now have their taste back to share some more recovery times - it helps as our Dr's don't like to share that info. As for me, my Dr. told me that it was normal but he said that 1 week after surgery. I have a visit with him in a few weeks at the 2 month mark and I get some more info. if this continues - I'll be sure to share with all.

Thanks again all for sharing - it allows us to have some sanity when others are trying to tell us we are experiencing something in our head.

Ariane05
08-02-2005, 09:00 AM
Is anyone else's sense of smell affected as well? Mine seems a bit off. Things still smell like they are supposed to, but my ability to pick up the scent seems strange. Certain things I can't smell in the room unless I'm right on top of them. But other things have an overpowering smell from far away. I don't know what to make of all this.

Charlatan, I wonder if we'll get used to it and think it has returned to normal too. My palate did go back up, but it is lopsided. It actually looks like it went back up higher than it was before the surgery, but I may have been so used to it being so low that I'm just imaginging that. It's hard to tell now! So glad to hear you don't feel as if you are choking on your uvula anymore!

Charlatan
08-02-2005, 11:42 AM
:wave:
Hmm... my sense of smell seems ok, not noticed any difference, but I do sometimes smell a metallic smell.. which may be linked to the metallic taste. I don't know. It's all weird. :confused:

glass666
08-03-2005, 09:01 PM
Someone please report news of normal tase coming back. I had mine out over 2 weeks ago. Things tase bad and my throat taste metallic. The talk over here is scarin me to death. I can deal with some weeks or even month. Dont tell me its permanant please!

peteyby
08-04-2005, 05:13 PM
Glass - hang in there, hopefully someone will grace us with some first hand experience and show us that there is light at the end of the tunnel. I had my surgery on June 30th and everyday brings the same disgusting and tasteless results. We are all being told to wait and that it will come back eventually, so that is what we have to go with.

I myself would prefer if the Dr's would really look into the problem and tell us exactly what is going on. I was reading that there are taste labs that can review this situation and pinpoint exactly what is happening and what has been affected, so i will push my doctor on this point, so I can get a more definitive and logical answer rather than - don't worry - just wait a couple of more months for your taste to come back.

Ariane05
08-04-2005, 09:03 PM
I really miss enjoying food. It's hard to describe to people around me that haven't gone having a tonsillectomy as an adult. They act like it doesn't sound like anything to be upset about. The best way I can describe it to them is it's like when you have a bad head cold and everything tastes awful or you can't taste anything at all, but it's somehow worse because it just goes on and on and on... I too get up each day hoping it will be somewhat better and I just keep having to go through the motions of eating food that tastes like nothing. I miss all my favorite foods, drinks, and ohhhh what I wouldn't give to be able to taste the food from one summer cookout. Oh well, just had to vent. I'm hungry all the time but I never feel like eating anymore. I do hope someone posts that it will get better.

mamatopleoff
08-08-2005, 02:47 PM
When searching for information about this post-op malady, I was happy to come across this website...not happy that so many adults are experiencing these same post-op symptoms, but relieved for myself. The Dr. keeps telling me my story is unusual and rare. He offers no explanation for my symptoms and refuses to admit that loss of taste and taste distortions are a real post-op side effect for adults who have a tonsillectomy. I am 45, and it has been 2 months since my surgery. I have exactly the symptoms you all describe. I constantly have a metal/acidic taste under my tongue and in the back of my mouth. I have lost all taste of sweet things except at the tip of my tongue. Even the other tastes seem to disappear and all becomes bland as I continue to eat after the first few bites. My swallowing is also sluggish. It feels like even soft things get stuck as they travel down my throat, and I need a drink to help wash down every bite. No one really understands how depressing it is not to be able to taste and take pleasure in eating. I read some case studies on line that point to the possibility of nerve damage as the cause for these symptoms. It is so frightening to think that this could be a permanent condition. I have decided to seek the opinion of another ENT about the symptoms I am experiencing. Stay tuned...

nevadamistermom
08-08-2005, 04:53 PM
Charlatan,

I'm guessing from the grammar used in your posts that you are in the UK. I wonder if you could give me some contact information for your doctor. He is the only one that seems to be aware of this as a potential long-lasting complication. My doctor insists that taste returns after a few months and the surgery couldn't possibly have affected my swallowing...or blunted my taste for so long. He doesn't seem to understand how a nerve so far away could be affected. I'm out of my league, but it would be helpful to find a physician somewhere that knows something about this and has access to the medical literature that might explain it. My doctor seems genuinely clueless and has never had this happen in 1000+ tonsillectomies. But this thread lets me know that others are experiencing the same thing. I am just slightly over 12 months and still experiencing the same symptoms. My doctor hasn't shown much initiative in getting "networked" with his peers who might be able to lend some insight. I'm getting tired of waiting for him to get motivated and want to try and get to the bottom of what is happening and whether it will eventually come back or not. :confused:

peteyby
08-10-2005, 04:07 PM
Isn't it just funny how there are so many people that are having this side effect and all of our doctors react like it is the first time they are hearing about it :confused:

Charlatan
08-11-2005, 07:28 AM
Charlatan,

I'm guessing from the grammar used in your posts that you are in the UK. I wonder if you could give me some contact information for your doctor. He is the only one that seems to be aware of this as a potential long-lasting complication. My doctor insists that taste returns after a few months and the surgery couldn't possibly have affected my swallowing...or blunted my taste for so long. He doesn't seem to understand how a nerve so far away could be affected. I'm out of my league, but it would be helpful to find a physician somewhere that knows something about this and has access to the medical literature that might explain it. My doctor seems genuinely clueless and has never had this happen in 1000+ tonsillectomies. But this thread lets me know that others are experiencing the same thing. I am just slightly over 12 months and still experiencing the same symptoms. My doctor hasn't shown much initiative in getting "networked" with his peers who might be able to lend some insight. I'm getting tired of waiting for him to get motivated and want to try and get to the bottom of what is happening and whether it will eventually come back or not. :confused:

Hi Nevada..

Crikey.. yanno, if I could help you, I would. Even I don't know who the doctor was, that warned me of the loss of taste afterwards.
See, I'm in England and had my surgery done on the NHS (socialised medicine) and so we don't get to choose what doctor we see, as we're not paying for private healthcare.
The ENT I was listed under was a white Englishman. He was the one who finally said "OK, I'll take your tonsils out."
When I went for my pre-op, I saw some Asian Pakistani or Indian doctor. It was HIM who warned me of the taste loss side effect (but added it's very very rare for it to be a permanent issue and that I'd be fine).
Then when I went in for the actual surgery, it was ANOTHER doctor altogether who did the procedure! lol! This was another Asian bloke.
After my anaesthesia wore off, I wanted to get hold of the surgeon, to see how it all went, but got told the surgeon doesn't have anything else to do with ya, once he's sliced and diced you! Nice, huh? :eek:

I don't know if it's possible, but I would suggest you seek out a different ENT Dr where you are.. I know they maybe won't like this, but perhaps you could print out this thread, so he sees how so many people complain of the same post-op problem with taste, so he won't think it's psychological. With your swallowing difficulties as well, I think that's your best bet right now. Sorry I can't be of much help. Hope you manage to find some answers.. keep us posted.

:)

mamatopleoff
08-11-2005, 03:35 PM
Peteyby-
Thanks for posting the info you found so everyone could benefit. I had read something similar. Although I don't understand all the medical and physiological lingo, I understand the part about nerve damage. Again, my fear is that this will be a permanent condition. I have found nothing yet about prognosis or treatment once taste is lost. I am still looking for information and a new specialist. I will keep ya'll informed.

peteyby
08-11-2005, 08:08 PM
Hi Mama - no problem - I figure that the more we can help each other out the better it is.

I am trying to research as much as I can before I have my 2 month follow-up with my ENT on the 22nd. I am hoping that we can have a lengthy discussion about what may be happening and what are the odds of recovery. But, yes you are correct - everything that I have read does not talk about prognosis or treatment - they just focus on identification of the problem - so needless to say that does not provide much comfort to us.

I'll be sure to post what happens on the 22nd:)

Ariane05
08-11-2005, 08:18 PM
Hi peteby, thanks a lot for posting that information. My physiology terminolgy isn't that great so I didn't understand it completely, but it was interesting to see that some doctors are at least taking notice of this problem. I too am very curious about prognosis or treatment. I have lost a lot of weight that I didn't need to lose since my surgery and eating just is not enjoyable at all. It does definitely impact our quality of life as they noted. I really hope this is not permanent.

Charlatan
08-15-2005, 03:54 AM
I went to see my GP today about summat else, but I did ask him whether he's heard of post-tonsillectomy patients ever complain of taste loss and a bitter taste and unable to taste sweet things. He said no (as I expected!). I told him I can't really taste chocolate anymore and he just said, "Ooh! I can't imagine not being able to taste chocolate, how awful.." (blah blah). lol
Anyway, either I am growing used to all this now, or it's not quite as bad as it once was, i.e. the constant bitter taste and loss of taste. It certainly isn't preventing me stuffing my face with food. :p
Maybe it will gradually return to normal, or near-normal, for the majority of us who have this complaint. If it's nerve damage, I should think that takes a while to heal.
That is all.
:)

peteyby
08-22-2005, 05:06 PM
Hi all - went to visit the ENT today for my 2 month follow-up. I told him about the taste thing and he seems to think that it is associated with the clamping of the tongue during surgery, as the clamping of the tongue disturbs your gag reflex and puts strain on the base of the tongue which can result in the problems I am having. He didn't feel that it was a nerve that was damaged, as he said that they were too deep to be affected.

He said that since the population of adult tonsillectomy's has been increasing the medical community has been seeing this as more of a common complication- but there still lacks conclusive studies on it. He said that since my taste wasn't totally gone - it was more likely that my taste would go back to normal - but time varies based upon the patient.

The two other causes of this taste thing is 1) zinc deficiency 2) acid reflux. I haven't had issues with heart burn, so we skipped that and he is having me take zinc lozengers after every meal and at bed to see if that helps.

My follow-up with him is in 4 months - so I will keep on waiting, but I have also contacted my general doctor to find another ENT to give me a 2nd opinion.


I hope all of you are doing well and keep on posting if anyone has anymore info. to share.

mamatopleoff
08-22-2005, 06:16 PM
Hey Peteyby,
Thanks for the update. I had also read that the taste distortion we are all experiencing could be a zinc deficiency. It would probably not hurt any of us to try taking the zinc. I took the article you copied us on, and tried to trace it to the Dr. who authored it in North Carolina. I was unable to access a phone number or e-mail, however, I did discover the University Medical Center in Winston Salem has a specialized clinic in the study and research of taste and smell. I e-mailed the Director there, a Dr. Jamie Kaufman, and am hopeful I will receive a response even though it has been over a week now. In the meantime, I have an appointment in 3 weeks for a second opinion as well. That article got me to thinking, we have a University Medical School at Emory in Atlanta, and they have an otolaryngology dept. If any physicians have up to date information on this problem, it should be in a medical school setting where research and study are ongoing. Keep hanging in there everyone. We owe it to ourselves to keep looking for answers. Knowledge is power. The more we know and can learn, the less helpless and hopeless we'll feel.

kat62
08-27-2005, 10:40 AM
Hi everyone,

It has been 2 1/2 months for me since my tonsillectomy and I also have experienced the difference in taste or lack of. Some of the things I used to like, I don't like anymore. A lot of mine is about sweets, not crazy about them anymore. I used to love cake but not anymore, it tastes awful. Even sweet tea tastes odd. I don't know, maybe time will help this. :)

Goldenfawn
08-27-2005, 03:37 PM
Hi all:

I'm 31 and had my tonsils out two weeks ago. I thought maybe I still had taste issues because I got nose work done too but I guess that might not be the case. Seems like everything I've ever had done medically I was the .05% who got crazy side effects and my greatest fear now is that my taste will never go back to normal. Hopefully I am wrong and it's just taking a long time, judging from what everyone else had to say. Maybe it will take longer because of the nose work. I would really hate to think that it would be like this forever. Like some of you it doesn't seem worth it to eat since it all taste awful anyway.

Have any of you found that foods you used to hate suddenly taste good? I was hoping since I was so picky to begin with maybe I would suddenly like things like salad...lol Again like some of you I have trouble tasting sweet things and have that strange acid/metalic taste towards the back. If I could figure out how to not have the food hit the back and sides of my tongue it might not be so bad...lol My throat is still pretty sore since I haven't lost my scabs yet and I still have pain in my nose from the nose work so I'm hoping once all that gets settled maybe it will go back to normal. However all your posts lead me to believe that probably isn't going to happen any time soon.

Guess I'll just be happy I wasn't the .05% that bleeds to death and just got screwed up taste buds.

Golden

gileyb
09-08-2005, 09:02 AM
Hi,

I had my tonsillectomy done 3 weeks ago today. I have been to my (ever so helpful!) GP with similar symptoms to everyone else. My tongue was stinging round the sides and the tip for the first 4-5 days after surgery and I seem to have the problem of not being able to taste sweet things :-( and a constant bad taste (metallic I'm not sure) but certainly unpleasant. I seem to taste the first thing I put in my mouth for the day but only thre horrible taste after that.
I was told it could be a side effect of Tetracycline anti-biotics and should return to normal within 6-8 weeks. I really do hope this is the case or my future career as a wine taster may have to be reconsidered ! I am glad (probably the wrong word) that others have experienced this as I was sure friends of mine thought I had a large part of my brain removed, along with my tonsils !

Looks like I may be in for a long ride judging by some of the posts !

Oh well, C'est la vie. One side effect no one told me about pre-op.

Please could all those who have recovered completely post replies to keep us all hoping !

Hey Girl:

Very glad to hear your showing some improvement.

Just wondering...Have you lost much weight from this? I have lost 15 pounds so far just because eating doesn't seem to be worth the effort. I do force down one real meal a day but that's about all I bother with now. Hard to psych yourself up when it all taste so awful. Just wondered.

Golden

peteyby
09-08-2005, 08:21 PM
Hi Giley - sorry to hear that you have joined our crew. Just hang in there and keep us updated on your condition.

I myself am a wine lover, so I really feel your pain - I was really getting into it over the last few years and passionately over the last year - my wife and I got heavily involved in tastings to assist in our professions.

If you haven't tried wine since the surgery - all I would say is hold off until you are really ready. Let's just say what used to be a pleasurable experience is now gone for me. The first couple of glasses were horrid, so much so, I had to spit them out. Now I work through it until my taste buds are numb and there is no taste.

My surgery was on June 30th and till this day - I still have to list wine as one of the worst things to have with this condition, along with chocolate, soda, water and sweets in general. For me, this has really been a lifestyle change, as of course I can no longer taste foods properly - but on the professional front - wine tastings have been out of the picture - I can only refer to theory and what I read. I am patiently waiting for this condition to correct itself, so I can restore my passion for wine - in the meantime - I have moved to cheap wines and have left the good stuff to age in the cellar. If this condition does not improve - it will be off to auction with my little collection.

Thanks for joining the discussion. I have found it very helpful talking with everyone on the board and have received a lot of good advice.

kajo127
09-09-2005, 11:47 AM
Just wanted to let those know there is light at the end of the tunnel I am 8 weeks post tonsillectomy! :wave: My throat is completely healed, my taste is back to normal and no more ear pain (YEA) I do have one minor problem that I wondered if anyone else has. I can not sneeze without holding my nose closed or anything that is in my nose and or throat comes right out. Also have to be careful when drinking fast or it comes into my nose. :rolleyes: I am hoping it is just weak muscles... Let me know if anyone has the same problem. Please

peteyby
09-09-2005, 07:54 PM
Hi Kajo - thanx for the positive feedback. Mine seems to be stubborn as hell, but at least there is hope. I haven't had the problem with the sneezing - but I have had a problem with a lot of mucus/phlegm build up in my throat - its like it is always there - I have been taking my zrytec D and to this point no big improvement - last week I was getting some blood in my phlegm - I'll have to ask the doctor about this - its annoying to always be spitting that stuff up. As for the fast drinking - yes I get that all time - quite annoying - I was out mountain biking the other day and went to take a big slug while out on the trail and right up the nose - it sucks, but I am hoping that this will go away in time. Did you have your adenoids out as well? I was thinking for myself that it was from that part of my surgery or the soft pallette work that was done - maybe I was wrong?

peteyby
10-06-2005, 07:34 PM
Just wanted to see how everyone was doing. Unfortunately, no change on my end - although I have found another ENT for a 2nd opinion - which is scheduled for Oct. 24th. I hope everyone is well and some are having better luck.

-- Pete

Ariane05
10-07-2005, 08:05 AM
Hi there peteyby. I thought I was having some slight improvement for a while there, but about 3 weeks ago I went back to not being able to taste anything at all other than a metallic taste at the back of my throat sometimes. My tonsillectomy was over 6 months ago now. I too have decided to seek a second opinion. I am getting scared that this will be permanent and I am losing even more weight. I still have throat pain once in a while and I still have problems swallowing things. I hope we are able to get some answers. Let us know how your appointment goes and good luck!

uncbabe17
10-15-2005, 06:57 AM
Hey guys! I am 23 and just 2 weeks post-op now, but I am having the same problems with taste as you guys, but with one minor difference: I CAN taste sweet things, but other things taste bitter. I have tried chef boyardee, and it tastes bitter, and spagetti tasted bitter last night. This morning I tried cheese on my toast and butter and jelly on another piece of toast, the cheese was horrible and so was the butter, but I could taste the jelly! I'm so tired of that!! I love spagetti and similar things and cannot taste them now. I was just wondering if anyone else had problems with non-sweet foods, since most people seem to have the trouble with sweets!

I also developed thrush about 4 days into my recovery so I was thinking that may have been the problem, but it has almost completely cleared up now and I'm still having trouble with taste. I also had to go in for a second surgery to control bleeding post-op and I don't remember having trouble tasting anything before the 2nd surgery, but I could have just not paid any attention to taste, as I was in so much pain. Hopefully my (and everyone else posting on this board) taste will return soon!!!!!

uncbabe17
10-19-2005, 04:04 PM
Hey guys!! Good news for me! My taste has come back!! It came back on about Day 14, so I guess I'm pretty lucky!! Now if only the pain was completely gone I'd be in the money!!

peteyby
10-24-2005, 06:07 PM
Hi all - went for my second opinion today, so here are the basics regarding the taste issue: it is nerve damage.

Nerve damage can be caused 3 ways during our operation: 1) damage can be caused by pressure to the nerve - during the surgery your tongue is clamped down to expose the tonsils for extraction. The pressure put on the tongue can cause damage to the nerves that are in the base layer of the tongue. 2) damage can be caused during removal of the tonsil when the tonsil bed is cut. 3) damage can happen from electronic damage when the doctor uses electrocauterization.

Specifically which one happened in each of our cases is hard to pinpoint and unfortunately there is no method to reverse the damage except for natural healing. Basically, in my case everything is scewed towards the bitter side - I can taste sweets but only for a brief moment and then it turns really bad like when I eat chocolate or have soda. Due to this fact the doctor believes that it is not an issue of a nerve being severed, but rather damage to the sheathing around the nerve. He explained that when the nerve is injured and the sheathing repairs itself some mapping of the nerves may get crossed like sweet senses to bitter etc. (like in my case) - he explained that over time the brain during repair of the nerve tries to establish a level ground to re-map the senses. Recovery - if any is common and may take up to 6 to 12 months. After 12 months, there is little or no chance of additional recovery that will drastically change the effects being experienced.

Now as explained before, he stated that there is nothing medically available to correct the nerve damage. He did state that there are some research hospitals that are experimenting with research on taste disorders - but these at the moment are only focused on data collection in pinpointing taste problems - he explained one in a facility in my area that uses electronic stimulation to test taste regions of the tongue to see if the taste is being perceived correctly by the nerves and may be able to confirm what the tongue/nerves are not sensing. But this research does not offer a solution to what the patient is experiencing, so if you are looking for a solution it may not give you what you are looking for.

Well, overall it looks like I will be in a holding pattern for the next year and if it doesn't improve within the year - I better get used to life like this. But I was very happy to go for a second opinion and really appreciated the fact that this Doctor took the time to explain what I was experiencing and gave me some guidlines on a prognosis. More than my surgeon did for me. I just hated how my surgeon went into lawsuit protection mode and treated me badly. Is it so wrong to care about what you are experiencing and wanting to be as edcuated as you can be about your condition? It really just turned me off. After today - I wish I was referred to this Doctor earlier, as I don't think I would be where I am now.

I hope that this may have helped some of you who are experiencing this condition and have not been able to find a Doctor who gives you anything other than just hang in there it will go away without talking to you in an educated manner.

I will keep you all apprised on my progression and would hope that you all would do the same. At least one thing may come of this though - unfortunately these surgeries (tonsilectomy, adenoidectomy, uvulaplasty and septoplasty) have done nothing to help my sinus infections. Since my T&A in June - I have gotten 2 sinus infections and both came with killer sore throats. The last one hit 2 weeks ago - I am currently on my 2nd round of antibiotics - first was Ketek, now Augmentin. I am going to use this doctor to help me out from this point forward - he is extending my Augmentin for another week and then I am going back on Nov. 21st for a follow-up to determine if I should go for another CT scan of the sinuses. If I can get my taste back & my sinus infections to go away I think I will be in heaven.

Good luck all and sorry for the long winded post.
:) Pete

jumbly
10-30-2005, 05:18 PM
Thank you so much for all this information I had assumed that the horrible taste in my mouth was a consequence of the painkillers I had been prescribed but having stopped taking them a couple of days ago I got on the internet and here I am. I had my op two weeks ago and I have the same symptoms as you have all described and what annoys me most of all (apart from chocolate and wine amoungst other things tasting horrible) is that this is the first I have heard about this side-effect, I don't recall the surgeon or my doctor mentioning anything to me about losing my taste. This operation was quite optional for me, an attempt to avoid my bi-annual bout of tonsillitis and seemingly permanent low-level mild inflammation that I was barely aware of ( my tonsils seemed to flare up slightly when the anti-biotics wore off and stay like that) but it wasn't making my life miserable or anything. Potentially losing enjoyment of food for the rest of my life is a very major side-effect and I'll be taking it up with my surgeon at the follow-up appointment next month and discussing it with my doctor next time I see him.
I'll let you know what he says and how my condition goes.

Thanks again everyone.

Auckland, New Zealand (it's a worldwide problem!)

peteyby
10-31-2005, 07:35 PM
Jumbly - thanks for posting and sorry to hear that you are in the same boat as the rest of us. Yeah - its amazing my Dr. wasn't up front with these side effects either and then all of sudden when I bring this to his attention - he said oh my notes state that we discussed this before surgery, so its not my fault you were warned. I hate that Dr's in the states automatically go into lawsuit prevention mode and throw bedside manner out the window as soon as something goes wrong. The fact that my 2nd opinion doctor took the time to explain everything to me and did all of his notes both written and verbal (recorded) in front of me was very comforting - this way we know we are both on the same page.

Please keep us updated on your status and what you're doctor has to say - it seems that I have been able to get more answers/guidance by being a more educated patient, well at least it makes me feel better knowing what is going on.

peteyby
11-21-2005, 07:13 PM
Hey all - well it has been a few weeks and guess what after the two rounds of anti-biotics were done my damn sinus infection came right back. So off for another round of CT Scans I went. I just got the results back and believe it or not - I am heading back for more surgery on December 23rd (X-mas should be just peachy this year!!!)

My CT scans showed chronic sinus infection w/ some signs inflamatory disease. Basically my previous Dr. never focused on improving the draining of my sinuses, so as soon as I get the slighest cold or sniffle - my sinuses basically close up shop due to the inflamation and then cook up some mean infection.

Well, I hope 3rd time is a charm because - I am sick of these operations.

So anyway on the topic of taste - since that is what this post is about. I have not seen any improvement in taste - things are pretty much the same since the surgery in June. But I am going on with life and just dealing with it.... but man this time of year is killing me, as I remember how good all of that holiday food tastes:)

I hope all of you are well and happy holidays.
-- Pete

TMarkow
12-12-2005, 12:18 PM
Hi everyone. I found this board right after I had my tonsillectomy and was so happy to have others going through the same situations. Unfortunately, I have the loss of taste as well (my surgery was 11/7 and I am 35). I have been back to the doctor twice and he keeps telling me to "give it another week". He said that the clamp may be the reason and to give it more time. I have never been so depressed in my life! I have chronic dry mouth and have to chase food down with water to avoid choking (again, my dr. said everything looks "fine"). It's SO not fine and it's comforting to know that I am not the only one experiencing the taste loss. I have lost 22 lbs and truly cannot and do not want to eat. I have had so many moments (especially watching my kids eat hamburgers and pizza) that I wish I had never had this surgery. A dr. friend of mine said that it's possible for the glossopharyngeal (I hope I spelled that right) nerve can be permanently damaged during this type of surgery, and this regulates the taste at the back and sides of the tongue (exactly where I have loss). I cannot believe that doctors don't explain this risk to patients prior to surgery. It also is amazing to me that we pay someone to treat us like we are crazy and hypocondriacs. Nevertheless, I am eager to hear from others who have had this happen. Misery does love company : )

tonnsil
12-12-2005, 01:53 PM
My tonsillectomy took place 9/11 (two days after yours) and I still have a big taste loss. I am also worried about it.
Was your dry mouth a consequence of the surgery or did you have it prior to the tonsillectomy?
Many medications cause dry mouth, and some damage the saliva glands and tear glands permanently.

TMarkow
12-17-2005, 06:12 AM
The dry mouth happened after the surgery. I keep water with me all day and it doesn't help. I started taking zinc a few days ago after reading that it may help (I would try anything at this point) with the loss of taste. Believe it or not, I actually seem to be tasting a little more. I noticed that I still cannot yawn like normal, so I have to believe that things are still trying to "right" themselves and there is still quite a bit more healing to do. I was told by a physician friend that it can take up to a year for nerves and taste buds to regenerate after being damaged...it's a slow process that requires "patience". Ugh!
I would try the zinc...one tablet a day and see if you have any improvement. I may be psyching myself out, but I do believe it is helping. At the very least, it boosts the immune system and may help stave off colds : )

peteyby
12-19-2005, 06:24 PM
TM - sorry to hear that you have entered our group of the unfortunate that have encountered this. I had my surgery in June and my taste is still not there - although I think that I am having a little improvement - at least it seems like the taste of things are lingering a bit more - I will wait through the year and see what happens. As for the dry mouth - I still have it bad - especially at night.... I just try to keep hydrated now.

I actually am heading in for another surgery on Friday - sinus surgery this time.... this time it is with the new doctor I mentioned in my previous post. I just made it crystal clear - don't screw up my taste any more!!!! or my smell!!!!! Lucky for me the risks of concern for this surgery are effects on eye sight or damage to the brain cavity.... but I am ensured that they are extremely rare.... so I am just going to say a couple of million prayers this week.

Anyway, hang in there and try to enjoy the holidays and keep us posted on your progress.

cobyandellasmom
01-17-2006, 10:42 AM
Add me to the list of unfortuanate receipients of this AWFUL thing. I'm 12 days post-op with no hope in sight. I have the same symptoms as everyone else, except for the metallic taste. I cannot eat anything sweet, it tastes HORRIBLE and that includes everything that has a sense of sweetness to them, like spaghetti sauce. I'm really hoping we all get through this soon. It's very depressing.

Jenn

yellow10
01-17-2006, 05:47 PM
hi, sorry to hear about this.
I'm having mine out march 1st, and asked the doctor about this. It sounds like it's because the taste buds on the back of your tongue are simply healing. He said that when they put the metal device on your tongue to hold it down or out of the way, when they do the surgery, sometimes it damages the tongue/taste buds as well. The taste should be coming back as the taste buds on the back of the tongue (which are geared towards sweet foods) starts to fully heal!! He said it is very rare for the condition to last, less then 1 percent. Since it's only day 12 for you, i would guess your mouth is still healing!

Ariane05
01-17-2006, 10:43 PM
Hello all,

I had my tonsils out nine and a half months ago, and I still have this problem. Some days I can taste a little bit, and some days I can't taste anything at all still. It is very depressing and I'm having trouble maintaining my weight because I just don't feel like eating. I'm still hoping this won't be permanent. I haven't gotten a second opinion yet but I am going to soon because my ENT did not take the problem seriously.

yellow10, I've heard that about the tastebuds too but the healing sure seems to be a very slow process. I think it is a normal reaction for the first few weeks afterwards but it doesn't seem to continue for very long past the first couple of weeks for most people. I hope your surgery goes well, hopefully you won't have this aspect of it!

cobyandellasmom
01-20-2006, 11:35 AM
Does anyone have the OPPOSITE problem with eating? Like the mentality of, "If I just eat one more bite, maybe my taste will be back!"? I find myself sampling throughout the day, so I've lost weight, but probably not as much as others have. It also seems like my taste *may* be coming back, but I'm not that hopeful yet...can it be that I am just getting used to it?

Jenn

jenhberry
01-30-2006, 07:31 AM
I am a 34year old female and recently had a tonsillecomy, after searching on google for loss of taste after tonsillectomy, to my amazement found a lot of you going through the same thing as me. I am 3 weeks out of surgery, what an ordeal, I had bleeding complications and was admitted into hospital for 3 days, dehydrated and bleeding would not stop.

I am home now and resting however the sad part is now that I am able to eat, everything tastes so bad. I too have the metalic taste at the back of my tongue and everything tastes like cardboard...This is so depressing to see that it can take years to come right, no one at the drs office told me about this, which angers me. Perhaps they did some nerve damage and wont admit it? THIS seems to be a common problem. Please tell me if your taste came right and if so how long it took. I heard taking zinc tablets can help, I am going to actively research this and go for second third and forth opinions because life without taste is not an option for me....bury me now...... :yawn:I have already lost 15 pounds and if I cant taste food I hate to know how much more weight I am going to loose. I will be eating cause I have to not because I want to.

cobyandellasmom
02-01-2006, 11:17 AM
jenhberry - We are in the same boat, sortof! I'm almost 4 weeks after and my taste seems to have returned a little most days. It almost seems hit or miss. The sweets seem to be the biggest factor in everything. All other food I have taste, but it doesn't seem as stong as normal and does not last the entire way until I swallow. I tried eating a Butterfinger today and I could taste the first few bites before I swallowed for the first few minutes. Then, as I got further into the bar, the taste went away altogether. I'm hopeful mine will return in full eventually, especially now that I'm actualy tasting some sweets, but then just "fatiquing" them after a bit. I used to get a HORRIBLE taste in my mouth when I attempted sweets. I've never had the metallic taste that everyone seems to have, I don't know if that is a factor or not. I'm sorry to hear you had complications. I'm thankful that I had none of that and recovery was VERY easy. I have my follow-up on Friday and you betcha I'm going to be asking about it!

Feel free to email me if you want!

[email protected]

Jenn

jenhberry
02-01-2006, 04:53 PM
HI there, it seems we have similar syptoms. I also have initial taste on the first bite, but end up spitting out food after the 3rd bite because of the bitter taste. I have been talking to a few people I know who had theirs out as an adult and they remember things tasting strange for a while after surgery but promise me that things will come right. I hope so. I can smell perfectly well but its the tasting thats all messed up. I also have trouble swollowing, food seems to stick at the base of my throat. I struggle to get it down. My dr told me to call him at the end of the week if it has not improved so believe me on Friday I will be calling him, but again he will say give it more time. I hope he is right and that time will heal, becuase if this is permanent I will go bizerk.. :jester:

cobyandellasmom
02-06-2006, 06:05 PM
Well, I'm all healed, which is a good thing! The nurse was saying how she had this done years ago and the same thing happened to her and she was going nuts until she talked to her grandfather who had the SAME THING happen to him! Anyway, she descibed it to a tee. Coke and chocolate are totally gross! Anyway, she said 6 months is how long it took her. Also, the doc also reassured me and said that he did not go near the nerve, that it is located under the tongue. He said just to hang in there. I will admit, it IS getting better, even sweets, but I'm not there yet totally.

Jenn

jenhberry
02-07-2006, 09:56 PM
I am feeling much better, as far as pain goes, however the taste thing is still an issue. Everything tastes very bland. Sweets and chocolates taste the worst. I used to enjoy coffee in the morning now after a few sips have to through it away, I am going on 4 weeks this thursday and wonder how much longer this is going to take. I have lost alot of weight because everything just tastes aweful. I can smell perfectly fine. But once I taste it , it changes to cardboard. YUK

TMarkow
02-09-2006, 08:21 AM
Hi everyone...

It has been a while since I have written. In checking in, I see that most of us have not experienced much improvement. I am now 3 months post surgery and the taste is not back. I can, to a very small degree, taste food. Unfortunately, it is not "normal". Sweets don't taste sweet and everything is just "off". Again, my JERKWEED of a doctor still says he doesn't "understand" why I can't taste normally. I still have slight dry mouth (although nothing like it was right after the surgery) and have lost 23 lbs. so far. I hope that anyone considering this surgery will review this board before they proceed. In hindsight, I would not have had it done.

peteyby
02-14-2006, 09:42 PM
Hi all - I am coming up on 8 months in 2 weeks and unfortunately the taste issue stills persists. The worst items still are sweets (chocolate) and carbonated beverages (ie. coke). I have been told by another doc that you will experience most recovery during the first 12 months, so I hope the next 4 months get better. But anyway since its been 8 months - I have just been training myself to get used to it and focus on the foods/beverages that are tolerable and keep away from the bad tasting ones.
I know that isn't much comfort, but its the best way I have been able to cope.

:) Pete

jenhberry
02-28-2006, 08:43 AM
3 months after surgery and I am sad to let you all know there is no change to my taste buds. I called my doctor and asked him "what did you do to me" he said this happens to a very small percentage of people and to call him back in 3 months time, and that there is nothing that him or anyone can do, he said that the taste buds will eventually regenerate themselves and come back, however I have doubt after reading some emails that they will ever come back, chocolate is the worst and sodas. The quality of my life has changed as food was such a huge factor for me, the only up side to this is that I have lost weight - 25 pounds . But I would rather be able to taste then be stick thin...Because I just dont enjoy food anymore, I eat cause I feel weak or hungry. I wish ENTs read this website and realise what they do to us. My concern or frustration is that they act like they dont know why this has happened and they act all surprised, when it seems this is a common problem. They should make aware to us.
:o