Re: Taste Bud

[Guest guest]

Hi Virginia

Before I had surgery for ctoma my taste had become distorted. Everything seemed to taste like metal or chemicals. After the surgery I had no sense of taste at all - I might as well have been eating cardboard. My taste came back completely after about 6 months.

The taste nerve is a branch of cranial nerve which controls sensation and movement throughout the head. This part of the nerve may get damaged, bruised or stretched either by the actions of the ctoma or during the surgery. As already stated, the nerve may not always recover. In most cases the brain learns to relocate the function of the non-working tastebuds to the undamaged tastebuds on the good ear side. So in effect, almost everybody will get their sense of taste back just as it was before.

What the doctor told you is correct. Loss of taste is a fairly normal experience and may take a few weeks or months to come back.

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

Phil

Hello, I joined this group about a month ago when I found out my son (11 yrs old) had c-toma in december. He had surgery on the 8th of February and I am grateful for this group as I was very prepaired. My question is, since he has had his surgery, he says he cannot taste his food. He can feel the coldness or warmth of the food but cannot taste it. We even did a taste taste of foods he despises. Hot sauce, creamed herring etc... He could not taste it. I was concerned and called his doctor and they said it was normal and it could take 3-6 months for him to regain his taste.Has anyone else ever had this problem?Thank you and as I said this group made me more at ease as we were going through this. Virginia

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[Guest guest]

I would like to know if besides taste buds anyone has experienced facial paralysis after having a ctoma removed. I had surgery on Dec. 7 and then again on Dec. 19 because my face become paralyzed on the right side. If anyone else has experienced this please let me know and if you have did the paralysis go away.

Hi

I think it depends on how severe the paralysis is and what caused it. Full blown face paralysis is very serious and needs to treated straight away. That's a situation where there is no movement or sensation at all, your eye will get stuck in an open position, it can't lubricate and drys out which will damage vision.

My own experience was less drastic and I developed it before I ever got to surgery. Basically I developed a very noticable facial tic. I couldn't control movement of my eyelid or the side of my mouth - they would just quiver on and off, sometimes it felt like half my head had shut down. Eating was hazardous and I felt socially embarrassed by the disfigurement that it caused. The severity of it varied over the next few years and I have been treated regularly by a neurotologist. Things have improved a lot over the past year. My face is a little bit stiff and some burning or smarting sensation from time to time, but that's about it. People who have a long history of ear disease generally do have some kind of facial weakness etc.

However bad your face situation is, it's something your doctor needs to be very aware of.

Phil

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[Guest guest]

I had read that too, and it surprised me. The article I read said

the right side of the tongue may lose the taste sensation and take

some time to regain it.

Gerry

>

> Hello, I joined this group about a month ago when I found out my

son

> (11 yrs old) had c-toma in december. He had surgery on the 8th of

> February and I am grateful for this group as I was very

prepaired.

>

> My question is, since he has had his surgery, he says he cannot

taste

> his food. He can feel the coldness or warmth of the food but

cannot

> taste it. We even did a taste taste of foods he despises. Hot

sauce,

> creamed herring etc... He could not taste it.

>

> I was concerned and called his doctor and they said it was normal

and

> it could take 3-6 months for him to regain his taste.

>

> Has anyone else ever had this problem?

>

> Thank you and as I said this group made me more at ease as we were

> going through this.

>

> Virginia

>

[Guest guest]

Hello,I had my CWD surgery in August. The nerve that goes to your tongue for taste runs through the middle ear (right where the c-toma is). Depending on the size and positioning of the c-toma that nerve gets pushed/moved or severed to get to the c-toma. In my case the c-toma was extensive and the doctor had to sever the nerve (on my right side). Severed nerves don't grow back.When I started eating and drinking after surgery I immediately noticed that nothing tasted right. At first I thought everything was spoiled. Orange juice tasted like paint. The top of my tongue on the right side felt similar to as if I burned the tastebuds off but without pain. Kinda numb a little, and the right side of my tongue felt slightly thicker. The right side of my tongue couldnt judge the consistency of food either, everything felt smooth and bland when hitting that side of my tongue.Even though the nerve will never grow back,

the brain is an amazing thing. My brain is re-learning to taste on that side of my mouth somehow. My tongue doesn't have that burnt tastebud feeling anymore. Things don't taste quite the same yet, but close and getting better all the time. Keep in mind my nerve had to severed and my brain is working it out. For those who haven't had to have their taste nerve severed only moved, rest assured after the inflammation goes down and healing occurs there will be less pressure on that nerve and it will go back to normal. Hope this help,__________________________________________________

[Guest guest]

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.

Dave

> >

> > Hello, I joined this group about a month ago when I found out my

> son

> > (11 yrs old) had c-toma in december. He had surgery on the 8th of

> > February and I am grateful for this group as I was very

> prepaired.

> >

> > My question is, since he has had his surgery, he says he cannot

> taste

> > his food. He can feel the coldness or warmth of the food but

> cannot

> > taste it. We even did a taste taste of foods he despises. Hot

> sauce,

> > creamed herring etc... He could not taste it.

> >

> > I was concerned and called his doctor and they said it was normal

> and

> > it could take 3-6 months for him to regain his taste.

> >

> > Has anyone else ever had this problem?

> >

> > Thank you and as I said this group made me more at ease as we were

> > going through this.

> >

> > Virginia

> >

>

[Guest guest]

Oh yes, excuse me. I was thinking right side because my c-toma is

on the right.

Gerry

> > >

> > > Hello, I joined this group about a month ago when I found out

my

> > son

> > > (11 yrs old) had c-toma in december. He had surgery on the

8th of

> > > February and I am grateful for this group as I was very

> > prepaired.

> > >

> > > My question is, since he has had his surgery, he says he

cannot

> > taste

> > > his food. He can feel the coldness or warmth of the food but

> > cannot

> > > taste it. We even did a taste taste of foods he despises.

Hot

> > sauce,

> > > creamed herring etc... He could not taste it.

> > >

> > > I was concerned and called his doctor and they said it was

normal

> > and

> > > it could take 3-6 months for him to regain his taste.

> > >

> > > Has anyone else ever had this problem?

> > >

> > > Thank you and as I said this group made me more at ease as we

were

> > > going through this.

> > >

> > > Virginia

> > >

> >

>

[Guest guest]

I know I have to have this surgery, but after reading about all the

possible side effects I sure don't want to. Hey, if my nerve get

severed then maybe I'll lose a few pounds. Got to look on the

bright side in some way.

Gerry

>

> Hello,

>

> I had my CWD surgery in August. The nerve that goes to your

tongue for taste runs through the middle ear (right where the c-toma

is). Depending on the size and positioning of the c-toma that nerve

gets pushed/moved or severed to get to the c-toma. In my case the c-

toma was extensive and the doctor had to sever the nerve (on my

right side). Severed nerves don't grow back.

>

> When I started eating and drinking after surgery I immediately

noticed that nothing tasted right. At first I thought everything

was spoiled. Orange juice tasted like paint. The top of my tongue

on the right side felt similar to as if I burned the tastebuds off

but without pain. Kinda numb a little, and the right side of my

tongue felt slightly thicker. The right side of my tongue couldnt

judge the consistency of food either, everything felt smooth and

bland when hitting that side of my tongue.

>

> Even though the nerve will never grow back, the brain is an

amazing thing. My brain is re-learning to taste on that side of my

mouth somehow. My tongue doesn't have that burnt tastebud feeling

anymore. Things don't taste quite the same yet, but close and

getting better all the time. Keep in mind my nerve had to severed

and my brain is working it out. For those who haven't had to have

their taste nerve severed only moved, rest assured after the

inflammation goes down and healing occurs there will be less

pressure on that nerve and it will go back to normal.

>

> Hope this help,

>

>

>

>

> __________________________________________________

>

[Guest guest]

Hiya,Just remember that any POSSIBLE complication will become a DEFINATE complication if you don't do the surgery. Hearing loss, dizziness, taste loss, facial paralysis, menengitis and brain hernia are among the things that will happen if you don't have it removed.They say Beethoven died from it. The c-toma is no joke, and although the possible complications from surgery seem scary, you are headed for those complications for sure if you don't remove it.I have heard of people putting this surgery off for years because of fear of complications. Then those complications set in anyway due to neglect. Get it out and the sooner the better.

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[Guest guest]

I have to agree with here ( except for that bit about

Beethovon LOL). Before one of my surgeries, I was siging the consent

papers and said to my Dr. " Hey, all these complications are going

to happen if I don't do this " . He kinda smiled at me and nodded. I

have bi-lateral c'tomas and both were invasive and extensive. The

one in the right ear had eaten into the lining of my brain. Yes, I

have serious hearing loss in both ears, but other than that I

suffered no permanent side effects from any of my surgeries.

>

> Hiya,

>

> Just remember that any POSSIBLE complication will become a

DEFINATE complication if you don't do the surgery. Hearing loss,

dizziness, taste loss, facial paralysis, menengitis and brain hernia

are among the things that will happen if you don't have it removed.

> They say Beethoven died from it. The c-toma is no joke, and

although the possible complications from surgery seem scary, you are

headed for those complications for sure if you don't remove it.

> I have heard of people putting this surgery off for years because

of fear of complications. Then those complications set in anyway

due to neglect. Get it out and the sooner the better.

>

>

>

>

> ---------------------------------

>

> Use Photomail to share photos without annoying attachments.

>

[Guest guest]

Yes, definitely. I am going to have the otologist referral tomorrow

so I will make an appointment, and hopefully the otologist will be

able to get me in. I know that I have to have the surgery. I'm

just not looking forward to it.

Gerry

>

> Hiya,

>

> Just remember that any POSSIBLE complication will become a

DEFINATE complication if you don't do the surgery. Hearing loss,

dizziness, taste loss, facial paralysis, menengitis and brain hernia

are among the things that will happen if you don't have it removed.

> They say Beethoven died from it. The c-toma is no joke, and

although the possible complications from surgery seem scary, you are

headed for those complications for sure if you don't remove it.

> I have heard of people putting this surgery off for years because

of fear of complications. Then those complications set in anyway

due to neglect. Get it out and the sooner the better.

>

>

>

>

> ---------------------------------

>

> Use Photomail to share photos without annoying attachments.

>

[Guest guest]

I would like to know if besides taste buds anyone has experienced facial paralysis after having a ctoma removed. I had surgery on Dec. 7 and then again on Dec. 19 because my face become paralyzed on the right side. If anyone else has experienced this please let me know and if you have did the paralysis go away. Thanks, Phil <psmorris@...> wrote: Hi Virginia Before I had surgery for ctoma my taste had become distorted. Everything seemed to taste like metal or chemicals. After the surgery I had no sense of taste at all - I might as well have been eating cardboard. My taste came back completely after about 6 months. The taste nerve is a branch of cranial nerve which controls sensation and movement throughout the head. This part of the nerve may get damaged, bruised or stretched either by the actions of the ctoma or during the surgery. As already stated, the nerve may not always recover. In most cases the brain learns to relocate the function of the non-working tastebuds to the undamaged tastebuds on the good ear side. So in effect, almost everybody will get their sense of taste back just as it was before. What the doctor told you is correct. Loss of taste is a fairly normal experience and may take a few weeks or months to come back. A good time to show off one's ability to eat raw chillis without flinching! Phil Hello, I joined this group about a month ago when I found out my son (11 yrs old) had c-toma in december. He had surgery on the 8th of February and I am grateful for this group as I was very prepaired. My question is, since he has had his surgery, he says he cannot taste his food. He can feel the coldness or warmth of the food but cannot taste it. We even did a taste taste of foods he despises. Hot sauce, creamed herring etc... He could not taste it. I was concerned and called his doctor and they said it was normal and it could take 3-6 months for him to regain his taste.Has anyone else ever had this problem?Thank you and as I said this group made me more at ease as we were going through this. Virginia No virus found in this incoming

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[Guest guest]

,

What did your doctors tell you?

Gerry

> Hi Virginia

>

> Before I had surgery for ctoma my taste had become distorted.

Everything seemed to taste like metal or chemicals. After the surgery

I had no sense of taste at all - I might as well have been eating

cardboard. My taste came back completely after about 6 months.

>

> The taste nerve is a branch of cranial nerve which controls

sensation and movement throughout the head. This part of the nerve

may get damaged, bruised or stretched either by the actions of the

ctoma or during the surgery. As already stated, the nerve may

not always recover. In most cases the brain learns to relocate the

function of the non-working tastebuds to the undamaged tastebuds on

the good ear side. So in effect, almost everybody will get their

sense of taste back just as it was before.

>

> What the doctor told you is correct. Loss of taste is a fairly

normal experience and may take a few weeks or months to come back.

>

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

flinching!

>

> Phil

>

>

>

> Hello, I joined this group about a month ago when I found out my

son

> (11 yrs old) had c-toma in december. He had surgery on the 8th of

> February and I am grateful for this group as I was very prepaired.

>

> My question is, since he has had his surgery, he says he cannot

taste

> his food. He can feel the coldness or warmth of the food but

cannot

> taste it. We even did a taste taste of foods he despises. Hot

sauce,

> creamed herring etc... He could not taste it.

>

> I was concerned and called his doctor and they said it was normal

and

> it could take 3-6 months for him to regain his taste.

>

> Has anyone else ever had this problem?

>

> Thank you and as I said this group made me more at ease as we were

> going through this.

>

> Virginia

>

>

>

>

>

>

>

>

> ---------------------------------

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.1.375 / Virus Database: 267.15.6/257 - Release Date:

10/02/06

>

>

>

>

[Guest guest]

Gerry, The doctor doesn't understand what is going on. He sent me to another doctor that can't explain why I have facial paralysis. They both seem to feel that it will get better, but it is going on 2 months now and not alot of change. I can now close my right eye somewhat. Some days I really have to strain to get the eyelid down. I really hope it improves. Do you know of anyone that this has happened to. Both doctor's say that when I get better they want to write a book about me because they have done thousands of these surgeries and everyone had success and no complications. Even the packing that was put in after surgery didn't dissolve it harden. When he did the second surgery he cleaned all of that out and didn't put any more in. He put an antibotic get into the ear and it even harden instead of desolving. That really puzzled the doctors. If you have any suggestions please let me know. Thanks, Gerry <gerrydel@...> wrote: ,What did your doctors tell you? Gerry> Hi Virginia> > Before I had

surgery for ctoma my taste had become distorted. Everything seemed to taste like metal or chemicals. After the surgery I had no sense of taste at all - I might as well have been eating cardboard. My taste came back completely after about 6 months.> > The taste nerve is a branch of cranial nerve which controls sensation and movement throughout the head. This part of the nerve may get damaged, bruised or stretched either by the actions of the ctoma or during the surgery. As already stated, the nerve may not always recover. In most cases the brain learns to relocate the function of the non-working tastebuds to the undamaged tastebuds on the good ear side. So in effect, almost everybody will get their sense of taste back just as it was before.> > What the doctor told you is correct. Loss of taste is a fairly normal experience and may take a few weeks

or months to come back.> > A good time to show off one's ability to eat raw chillis without flinching!> > Phil > > > > Hello, I joined this group about a month ago when I found out my son > (11 yrs old) had c-toma in december. He had surgery on the 8th of > February and I am grateful for this group as I was very prepaired. > > My question is, since he has had his surgery, he says he cannot taste > his food. He can feel the coldness or warmth of the food but cannot > taste it. We even did a taste taste of foods he despises. Hot sauce, > creamed herring etc... He could not taste it. > > I was concerned and called his doctor and they said it was normal and > it could take

3-6 months for him to regain his taste.> > Has anyone else ever had this problem?> > Thank you and as I said this group made me more at ease as we were > going through this. > > Virginia> > > > > > > > > ---------------------------------> > No virus found in this incoming message.> Checked by AVG Free Edition.> Version: 7.1.375 / Virus Database: 267.15.6/257 - Release Date: 10/02/06> > > >

[Guest guest]

,

No, I don't have any suggestions. I'm very new to this, after

having just discovered I have a c-toma a few weeks ago. However, I

wonder if your doctors have a background in neurotology or if

they've consulted with a neurotologist. I've heard that this

happens in some cases, and in truth, I'm dreading my surgery in case

this happens to me. Has your primary care physician had any input

into this since it happened? Maybe it's time to revisit him/her and

ask if you have any more options.

I think the most important thing to do is to make sure you have the

most qualified people working on your situation. I wish you the

best and hope your face becomes better soon.

Gerry

> > Hi Virginia

> >

> > Before I had surgery for ctoma my taste had become distorted.

> Everything seemed to taste like metal or chemicals. After the

surgery

> I had no sense of taste at all - I might as well have been eating

> cardboard. My taste came back completely after about 6 months.

> >

> > The taste nerve is a branch of cranial nerve which controls

> sensation and movement throughout the head. This part of the nerve

> may get damaged, bruised or stretched either by the actions of the

> ctoma or during the surgery. As already stated, the nerve

may

> not always recover. In most cases the brain learns to relocate the

> function of the non-working tastebuds to the undamaged tastebuds

on

> the good ear side. So in effect, almost everybody will get their

> sense of taste back just as it was before.

> >

> > What the doctor told you is correct. Loss of taste is a fairly

> normal experience and may take a few weeks or months to come back.

> >

> > A good time to show off one's ability to eat raw chillis

without

> flinching!

> >

> > Phil

> >

> >

> >

> > Hello, I joined this group about a month ago when I found out

my

> son

> > (11 yrs old) had c-toma in december. He had surgery on the 8th

of

> > February and I am grateful for this group as I was very

prepaired.

> >

> > My question is, since he has had his surgery, he says he cannot

> taste

> > his food. He can feel the coldness or warmth of the food but

> cannot

> > taste it. We even did a taste taste of foods he despises. Hot

> sauce,

> > creamed herring etc... He could not taste it.

> >

> > I was concerned and called his doctor and they said it was

normal

> and

> > it could take 3-6 months for him to regain his taste.

> >

> > Has anyone else ever had this problem?

> >

> > Thank you and as I said this group made me more at ease as we

were

> > going through this.

> >

> > Virginia

> >

> >

> >

> >

> >

> >

> >

> >

> > ---------------------------------

> >

> > No virus found in this incoming message.

> > Checked by AVG Free Edition.

> > Version: 7.1.375 / Virus Database: 267.15.6/257 - Release Date:

> 10/02/06

> >

> >

> >

> >

[Guest guest]

...

facial paralysis is one of the hugest concerns when doing a c-toma removal. You have a facial nerve that runs through your ear, usually it is covered in a very thin sheath of bone (I think that is how our doc described it). C-tomas can erode bone so doctors must be VERY careful not to touch or nick this bone or the nerve if it has been exposed.

My son's surgeon does several different precautions with the facial nerve during surgery to prevent the nerve from being damaged. One of the first things they checked for after surgery was if he could scowl and smile.

I would seek a second opinion.

I am really sorry you are going through this

P.S. I am by NO means an expert on this, and if anyone sees an error in what I wrote please feel free to point it out.

Joycelyn

both seem to feel that it will get better, but it is going on 2 months now and not alot of change.

[Guest guest]

Joycelyn,

I'm no expert either, yet I'm concerned about some of the things in

's message. From the description given, it sounds like the

doctors are acting like they've never heard of facial paralysis in a

patient after having c-toma surgery. In my very first talk with my

ENT, he was checking to see if I had facial paralysis, and that was

before surgery. He told me the possibility was there for it to

happen in surgery. So, I don't understand how doctors could act as

if this was unexpected.

In my purely non-medical opinion it would seem they would plan for

the possibility of paralysis and have a treatment plan. I didn't

see anything in 's message indicating they were going to do

anything but " wait it out " . They are the doctors, and they should

know what's best. However, I can't help but think that maybe

needs to talk to several other qualified doctors and get a

variety of options for a plan of action and then make a sound

decision based on all the facts. Hope I said that as diplomatically

as possible. I'm not trying to criticize her doctors, but I do

think she needs all the information she can get.

Gerry

>

> ...

> facial paralysis is one of the hugest concerns when doing a c-toma

removal.

> You have a facial nerve that runs through your ear, usually it is

covered in

> a very thin sheath of bone (I think that is how our doc described

it).

> C-tomas can erode bone so doctors must be VERY careful not to

touch or nick

> this bone or the nerve if it has been exposed.

> My son's surgeon does several different precautions with the

facial nerve

> during surgery to prevent the nerve from being damaged. One of

the first

> things they checked for after surgery was if he could scowl and

smile.

> I would seek a second opinion.

> I am really sorry you are going through this

>

> P.S. I am by NO means an expert on this, and if anyone sees an

error in

> what I wrote please feel free to point it out.

>

> Joycelyn

>

>

>

>

>

>

>

>

>

> > both seem to feel that it will get better, but it is going on 2

> > months now and not alot of change.

>

[Guest guest]

I completely agree. I can't believe she wasn't warned about this before hand, it is one of the complications our surgeon went over the most. And " waiting it out " isn't a treatment plan. are there excercises she could do, are there medications she could take, was the nerve nicked during surgery, what precautions were taken during surgery to ensure the safety of the nerve? How many of these surgeries has the doctor performed, because they have to know facial paralysis is a possibility. I would be asking a lot of questions at this point.

Joycelyn

On 2/17/06, Gerry <gerrydel@...> wrote:

Joycelyn,I'm no expert either, yet I'm concerned about some of the things in 's message. From the description given, it sounds like the doctors are acting like they've never heard of facial paralysis in a patient after having c-toma surgery. In my very first talk with my ENT, he was checking to see if I had facial paralysis, and that was

before surgery. He told me the possibility was there for it to happen in surgery. So, I don't understand how doctors could act as if this was unexpected.In my purely non-medical opinion it would seem they would plan for the possibility of paralysis and have a treatment plan. I didn't see anything in 's message indicating they were going to do anything but " wait it out " . They are the doctors, and they should know what's best. However, I can't help but think that maybe needs to talk to several other qualified doctors and get a variety of options for a plan of action and then make a sound decision based on all the facts. Hope I said that as diplomatically as possible. I'm not trying to criticize her doctors, but I do think she needs all the information she can get.Gerry

>> ...> facial paralysis is one of the hugest concerns when doing a c-toma removal.> You have a facial nerve that runs through your ear, usually it is covered in> a very thin sheath of bone (I think that is how our doc described it).> C-tomas can erode bone so doctors must be VERY careful not to touch or nick> this bone or the nerve if it has been exposed.

> My son's surgeon does several different precautions with the facial nerve> during surgery to prevent the nerve from being damaged. One of the first> things they checked for after surgery was if he could scowl and smile.> I would seek a second opinion.> I am really sorry you are going through this> > P.S. I am by NO means an expert on this, and if anyone sees an error in> what I wrote please feel free to point it out.

> > Joycelyn