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I really think we should interview these Drs. before we pay them a penny, I

wish I had the money and time and the BIG let downs that so many drs. have

put me through, Hey someone out there this would be a great book?? We could

call it Hang EM High. I swear that some are not real or they are like DR.

SWANGO who was doing everyone in. Because of my bad attitude I basically have

been treating myself, I have a DO who just gives me what I ask for, sometimes

we fight about it, but he gives it to me. but I am just trying to maintain at

this point. I just can't bear to go to one more Rhemuy and have test after

test and have to argue, I have had afew good drs. but one died and then one

retired, so I am beyond burned out. Just my view, and I am learning all the

new stuff here anyway. from Ohio

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Chris-

Love that name - " Hang EM High " - I think they deserve what horse theives got

in the old west!

I'm burnt out, too, from the disappointments fr these drs, & fr having to do

all their work.

Lyn

==============

> I really think we should interview these Drs. before we pay them a penny,

>I

>wish I had the money and time and the BIG let downs that so many drs. have

>put me through, Hey someone out there this would be a great book?? We could

>call it Hang EM High. I swear that some are not real or they are like DR.

>SWANGO who was doing everyone in. Because of my bad attitude I basically

>have

>been treating myself, I have a DO who just gives me what I ask for,

>sometimes

>we fight about it, but he gives it to me. but I am just trying to maintain

>at

>this point. I just can't bear to go to one more Rhemuy and have test after

>test and have to argue, I have had afew good drs. but one died and then

>one

>retired, so I am beyond burned out. Just my view, and I am learning all the

>new stuff here anyway. from Ohio

>

>

>To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

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  • 3 years later...

How long does ot take for your taste buds to return to normal? My surgery was Oct. 1st, and my mouth tastes like metal all the time.

ann <ann_stargazer@...> wrote:

Kimi,

Great to hear that your post-op is going good. Yeah - taste bud change is definitely a good excuse to try different things - enjoy !!

Wishing you a speedy recovery - take care

annkimmie3_us <kimmie3_us@...> wrote:

Hi, I am 4 days post-op & doing better than any other dreaded c-toma surgery I have ever had !! There are a couple new post-op experiences this time but I can hear better than ever so I figure this should be a breeze !!!!!!!!!! The worst one is food I have always loved just doesn't taste the same !! But hey, that just means I have an excuse to try lots of new stuff !!!!!!!!!!!! My main reason for posting tonight is to say Thank You again to all of you that have been so sweet & supportive to me. This is a great place to share your feelings & further educate yourself about c-toma. I don't know about alot of you but in my 35 yrs of dealing w/ this most folks shy away cause this is a problem not many are educated about. If anyone should ever like to

chat my user name on messenger is kimi616. I know I have found solace in the great folks I have met on here !!!!!!!!Good Luck to all !!!!!!!!kimi

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,

That totally depends. But hopefully the metalic taste will not last for much longer. Since my surgery I can tell whenever I'm gettig an infection or anything because I get the metalic taste. Before I hurt I have the taste, so I can really control my infections (of which I have a few) because my Doctor knows and can give me antibiotics early.

As to the sense of taste in general. That could take a while, depending on if there was any nerve damage. Occassionally, and with severe c-tomas, you can loose the nerve and never taste on that side of your mouth again. (Which you cease to notice after a little bit cause your brain adapts.) But like I said, I believe that is fairly uncommon.

Osburn <malissaosburn@...> wrote:

How long does ot take for your taste buds to return to normal? My surgery was Oct. 1st, and my mouth tastes like metal all the time.

ann <ann_stargazer@...> wrote:

Kimi,

Great to hear that your post-op is going good. Yeah - taste bud change is definitely a good excuse to try different things - enjoy !!

Wishing you a speedy recovery - take care

annkimmie3_us <kimmie3_us@...> wrote:

Hi, I am 4 days post-op & doing better than any other dreaded c-toma surgery I have ever had !! There are a couple new post-op experiences this time but I can hear better than ever so I figure this should be a breeze !!!!!!!!!! The worst one is food I have always loved just doesn't taste the same !! But hey, that just means I have an excuse to try lots of new stuff !!!!!!!!!!!! My main reason for posting tonight is to say Thank You again to all of you that have been so sweet & supportive to me. This is a great place to share your feelings & further educate yourself about c-toma. I don't know about alot of you but in my 35 yrs of dealing w/ this most folks shy away cause this is a problem not many are educated about. If anyone should ever like to

chat my user name on messenger is kimi616. I know I have found solace in the great folks I have met on here !!!!!!!!Good Luck to all !!!!!!!!kimi

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-

My surgery wast Sept. 26th and my taste-buds have not returned as well. Just to

let you know that you're not alone.

-

On Fri, 31 Oct 2003 08:07:05 -0800 (PST), Osburn wrote

> How long does ot take for your taste buds to return to normal? My surgery was

Oct. 1st, and my mouth tastes

> like metal all the time.

>

>

>

> ann <ann_stargazer@...> wrote:

> Kimi,

>

> Great to hear that your post-op is going good. Yeah - taste bud change is

definitely a good excuse to try

> different things - enjoy !!

>

> Wishing you a speedy recovery - take care

>

> ann

>

> kimmie3_us <kimmie3_us@...> wrote:

> Hi,

>

> I am 4 days post-op & doing better than any other dreaded c-toma

> surgery I have ever had !!

> There are a couple new post-op experiences this time but I can

> hear better than ever so I figure this should be a breeze !!!!!!!!!!

> The worst one is food I have always loved just doesn't taste the

> same !! But hey, that just means I have an excuse to try lots of new

> stuff !!!!!!!!!!!!

>

> My main reason for posting tonight is to say Thank You again to

> all of you that have been so sweet & supportive to me.

>

> This is a great place to share your feelings & further educate

> yourself about c-toma. I don't know about alot of you but in my 35

> yrs of dealing w/ this most folks shy away cause this is a problem

> not many are educated about.

>

> If anyone should ever like to chat my user name on messenger

> is kimi616. I know I have found solace in the great folks I have met

> on here !!!!!!!!

>

> Good Luck to all !!!!!!!!

>

> kimi

>

>

>

>

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  • 3 months later...

Hi ,

From my recent surgery Jan 9th my taste buds till aren't back 100%. The

first major surgery it took a few months to come back fully (at least for

me, every one varies).

Jane

>From: " " <purr_30@...>

>Reply-cholesteatoma

>cholesteatoma

>Subject: Taste Buds

>Date: Fri, 13 Feb 2004 04:52:12 -0000

>

>Can anyone share their experience on how long it took for your taste

>buds to return.

>

>Thanks

>

>

>

>

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Hello ~

I had my surgery back on November 4, 2003 and am still having great

difficulties with my taste buds. I would like to know the answer to

this question also. You will always find me either with a lemon drop

in my mouth or drinking lemonade. Its helps with the taste a little.

Lori

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It took me 3-4 months to regain the taste (10 months later, I can

still tell that my right side of my tongue isn't as good as my left,

but it doesn't bother me much (I had a Right ear operation).

it seems to come back for most (at different rates)

carrie

> Can anyone share their experience on how long it took for your

taste

> buds to return.

>

> Thanks

>

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---,

Wow, I have had 20 plus c-toma surgeries & waiting for the taste

buds to return to normal has varied.But usually they return to

normal for me by about 5 to 8 months after surgery. After past

surgeries food has usually tasted really bland & not good at all.

But this last surgery threw me a new way. Its been 5 months & it

seems my food either tastes as if a box of salt has been added or my

food burns my throat as if all the hot spices known to mankind have

been added !!! I don't know whats up w/ this last one but it is

slowly getting better!!!

Its not enough to deal w/ the c-toma & surgeries is it? No....we

have to eat ucky food for awhile also!! LOL It does get better

tho....just takes a little time!

kimi

In cholesteatoma , " " <purr_30@y...> wrote:

> Can anyone share their experience on how long it took for your

taste

> buds to return.

>

> Thanks

>

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  • 8 months later...

,

And some people have many more tastebuds than others do. People with many

taste buds are the ones with less tolerance for hot spices. I cannot eat what

my kids and grandkids eat. And I could not tolerate hot spices when I was

young., either.

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  • 3 months later...

,

Based on your previous e-mail, which side is salty and what on the side of

the tongue?

Re: Taste

>

> Alice,

>

> I am pretty certain that we have taste buds all over our tongue (or

> maybe

> just the upper surface). Maybe you were referring to the side of the

> brain that

> interprets taste.

>

> I have never heard that only those implanted on the right side may have

> taste involvement. I know I did , but I am implanted on the right.

>

>

>

> ________________________________________________________________

> Speed up your surfing with Juno SpeedBand.

> Now includes pop-up blocker!

> Only $14.95/ month - visit http://www.juno.com/surf to sign up today!

>

>

>

>

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  • 1 year later...

Surfin Dave wrote:-

> Yes, my left taste nerve was severed during my surgery. I didn't have

> any taste on the left side of my tongue for a couple of months, so I

> was chewing mostly on the right side - except for foods I didn't like

> :-). There was also a metallic taste for awhile. Now my taste is

> normal again.

That was my experience too. I hadn't been forewarned, but when it was explained

to me I thought " fair enough " , and within a month or two all was well again. As

others have posted, the brain is a clever beast and works its way around these

things given time.

Also Phil wrote:-

>A good time to show off one's ability to eat raw chillis without flinching!

Phil, I will have to bow to your superior experience on that one !!

,

Milton Keynes , UK

Signup to supanet at

https://signup.supanet.com/cgi-bin/signup?_origin=sigwebmail

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Yes, you pay for chilis one way or another. Either while you're

eating them, or a few hours after. :-) I don't think I'll be

downing any habeneros to show off my newfound abilities.

Gerry

-

>

> >A good time to show off one's ability to eat raw chillis without

flinching!

>

> Phil, I will have to bow to your superior experience on that

one !!

>

>

>

> ,

> Milton Keynes , UK

> Signup to supanet at https://signup.supanet.com/cgi-bin/signup?

_origin=sigwebmail

>

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  • 11 months later...

Hi!

my son also has what i would consider odd taste buds. i can never

guess what he'll like or not like. for a three year old to refuse

chocolate and cookies but love bran muffins?! i always figured he

takes after my husband who eats very strong flavors, unlike me :)

although my son is picky about texture. does your son have texture issues?

is

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Hi, Sandy -

The taste stuff was always explained to me as one of the many sensory issues

Josh would have. There was a time he craved really strong tastes - hot and

spicy food, tart stuff, etc. Then that subsided and he can't stand anything

anymore that has strong flavors. Like with a lot of the sensory issues

associated with sensory integration dysfunction, things will change.

What I've noticed lately is what part of Josh's tongue is affected by the

taste and/or texture of food. I know, sounds weird and as if I'm incredibly

anal about all of this. But, and this has happened several times over the last

few weeks, I was watching him eat (easy to do since he chews with his mouth open

LOL!). We had, for instance, pot roast with roasted potatoes, carrots, onions,

and celery last night. If he put the food on his spoon (almost 9 years old and

I can't get him to switch to a fork yet! darn fine motor skills make it really

tough!) with, from the tip of the bowl end, carrots, potatoes, then meat, he ate

it and chewed everything just fine. However, if he put the carrots farthest

from the tip of the bowl end (thus touching more at the front of his mouth),

he'd spit the carrots out! I experimented with putting the food in different

orders and giving it to him to put in his own mouth - everytime carrots were

farthest from the tip of the bowl, out

they'd come! This has happened with several different things from fresh

spinach (in a salad with a vinaigrette dressing) to eggplant to ham. Go

figure!! Makes me wonder about the position of the taste buds and the

sensitivities in his tongue - would this have an effect on his ability to say

different letters, sounds, or words? Hhhmmm... weird but interesting!

Sherry

sandy lehmann <mommie2chris@...> wrote:

Hi

I'm wondering if anyone else out there has a child with what seems

to be odd taste buds.

I've been reading how people are having a hard time getting fish

oils into their kids.

My son loves the taste of the supplements. I can hardly get it on

the spoon quick enough. I use a push pin to prick the capsules(safer

than a knife for me, I'm a zlutz:)!)and he's grabbing at the spoon

already.

My ds(7 years old now)loves anything that tastes strong. Blue

cheese, smoked salmon, dijon mustard by the spoonful. I've had a

very hard time getting anything kid flavored into him. If I come at

him with a bottle of tylenol kid flavor he starts screaming. I've

tried thin strips for coughs and he hits and spits at me so I tried

the most awful tasting cough syrup I could find and he said " more

please " , you could have knocked me over with a feather...the stuff

was really bad and he loved it!

anyway, just wondering if anyone else is experiencing this!

Sandy

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--Hi is,

Yes, has alot of texture issues. We still can't feed him

chicken or meat such as steak or roast. He eats sausages(again the

spicy ones)but if you give him a piece of chicken you'll find it an

hour later still in his mouth!

I always knew that he liked strong flavours, but lately it's been

getting worse and i'm thinking that his taste buds are really off.

any other person would have thrown up at the taste of buckleys cough

syrup but liked it!

Thanks for your response,

take care

Sandy

- In , " alilvrs " <isHMS@...>

wrote:

>

> Hi!

> my son also has what i would consider odd taste buds. i can never

> guess what he'll like or not like. for a three year old to refuse

> chocolate and cookies but love bran muffins?! i always figured he

> takes after my husband who eats very strong flavors, unlike me :)

> although my son is picky about texture. does your son have texture

issues?

> is

>

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My 3 year old daughter has an odd set of taste buds. She doesnt like

anything sweet. prefers meat over vegetables. wont eat unless it has

mustard on it. She will take a sucker and try it but thats about it.

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  • 2 years later...

Dear

I've had a funny and strange taste in my mouth since I started INF and then

on to other drugs back in 2000. It's like a thick coating and I have lost my

appetite for most things. I no longer crave anything. Give Sprycel a chance to

show what it can do. They took me off of it, but I still think it is the best

drug I ever had.

Blessings and keep on keeping on,

Lottie

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