Re: Re: Is it normal about surgery?

[Guest guest]

Hello,

Losing your taste for a bit is normal. Your taste

nerve runs through the middle ear, so many times they

have to " stretch " it to get out the cholesteatoma.

You'll have a metallic type taste for awhile, but it

goes back to normal in a couple of weeks.

I am surprised your doctor waited so long to tell you

about removing the bones. However, it makes sense you

can't hear as well, you don't have the bones to

conduct the sound. Most doctors do not do

reconstructive surgery at the same time they remove

the cholesteatoma. Usually you will have a 2nd look

surgery about 6 months-1 year after the initial

sugery. This is so the doctor can open your ear back

up and confirm there is no more cholesteatoma. This

is usually when they will put in a prosthesis.

--- ben_hu30 <ben_hu30@...> wrote:

>

> >

> > Hi, I did the surgery to remove the cholesteatoma

> two weeks ago. This

> > week the doctor suddenly told me that two earbones

> were taken out and

> > I need to do another surgery to install my

> earbones after two years. I

> > have a feeling of being cheated. Because before

> the surgery he never

> > told me about removing my earbones. He said he did

> that because he

> > want to make sure that there will no cholesteatoma

> anymore before

> > installing the earbones. In his way, I need to do

> the surgery at

> > least two times.

> > I dont understand why he can not install my

> earbones back in the same

> > surgery. In this way, even the cholesteatoma comes

> out again in two

> > years, I need to do surgery at most two times. But

> what if there no

> > cholesteatoma anymore? In that case I dont need to

> the second surgery.

> > I really can not understand the doctor's mind.

> Maybe he just wants to

> > make more money by doing unnecessary surgery to

> patient?

> >

> Another thing is that my hearing is worse than

> before the surgery and I

> lost my taste on the right part of my tongue.

>

>

>

__________________________________________________

[Guest guest]

Hi, Cris: Thanks for your information. I think it is very useful to me. Now I begin to believe it is a normal procedure. Thanks you again. I feel better now. Also good luck for your coming surgery!Ben cholesteatomato <cholesteatomato@...> wrote: Hello Ben, Hope you feel better... If this can help, I haven't had my operation yet which is due in June, but my sergeon has already told me he would need to operate twice: once in June to take the ctoma out, and the

second time a year and a half later for reconstruction and ctoma removal IF recurrence... I think it is a pretty common procedure. Hope these words make you feel better, Cris > > Hi, I did the surgery to remove the cholesteatoma two weeks ago. This > week the doctor suddenly told me that two earbones were taken out and > I need to do another surgery to install my earbones after two years. I > have a feeling of being cheated. Because before the surgery he never > told me about removing my earbones. He said he did that because he > want to make sure that there will no cholesteatoma anymore before > installing the earbones. In his way, I need to do the surgery at > least two times. > I dont understand why he can not

install my earbones back in the same > surgery. In this way, even the cholesteatoma comes out again in two > years, I need to do surgery at most two time. But what if there no > cholesteatoma anymore? In that case I dont need to the second surgery. > I really can not understand the doctor's mind. Maybe he just wants to > make more money by doing unnecessary surgery to patient? >

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Autos.

[Guest guest]

Allie: Thanks for your reply. It seems I am one of the 20% people. Thanks a lot for your information.BenAllie <vntage_retro@...> wrote: did your doc have to remove the taste nerve that runs through the middle ear? mine was so tangled up in my c-toma that my doc took it out. from what i know 20% of people who have it removed have problems with their taste. so maybe that's why you won't get taste back on that side? Allie > Hi, I did the surgery to remove the cholesteatoma two weeks ago. This > week the doctor suddenly told me that two earbones were taken out and > I need to do another surgery to install my earbones after two years. I > have a feeling of being cheated. Because before the surgery he never

> told me about removing my earbones. He said he did that because he > want to make sure that there will no cholesteatoma anymore before > installing the earbones. In his way, I need to do the surgery at > least two times. > I dont understand why he can not install my earbones back in the same > surgery. In this way, even the cholesteatoma comes out again in two > years, I need to do surgery at most two time. But what if there no > cholesteatoma anymore? In that case I dont need to the second surgery. > I really can not understand the doctor's mind. Maybe he just wants to > make more money by doing unnecessary surgery to patient? > > > > > > > --------------------------------- > Ahhh...imagining that irresistible "new car" smell? > Check out new cars at

Autos. > > > > > --------------------------------- > Ahhh...imagining that irresistible "new car" smell? > Check outnew cars at Autos. >

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Autos.

[Guest guest]

Rich: Thanks for your reply.Because the doctor didnt told me anything about removal my earbones before the surgery, I didnt discuss this issue with him. I think I lost trust in my doctor now. How is your hearing now? Hope it is much better.Benmcguyver98 <mr@...> wrote: Ben, I agree with you 100%; in fact, I brought up the same issue with my surgeon at my pre-op appointment. Keep in mind that I love my surgeon and have the utmost trust in her and her abilities. When I asked her why

she wasn't going to do the reconstruction at the same time, she said it was SOP (standard operating procedure) to wait 6-9 months to see if there is a re-occurrence. Putting SOP aside, I asked her to give me a logical medical reason why both could not be done together as to eliminate a second surgery if the ctoma did not come back. After a few minutes of silence, she said she could not. As a result, my ear bone replacement was done immediately after my ctoma removal. Needless to say, it not the fact that it cannot be done, if it isn't discussed, a surgeon is mostly likely going to do what they're use to doing. Since my wife scrubs for a renowned plastic and reconstructive surgeon, I guess I've become a little more adept to asking questions rather than leaving everything up to the surgeon. Rich > > Hi, I did the surgery to remove the cholesteatoma two weeks ago. This > week the doctor suddenly told me that two earbones were taken out and > I need to do another surgery to install my earbones after two years. I > have a feeling of being cheated. Because before the surgery he never > told me about removing my earbones. He said he did that because he > want to make sure that there will no cholesteatoma anymore before > installing the earbones. In his way, I need to do the surgery at > least two times. > I dont understand why he can not install my earbones back in the same > surgery. In this way, even the cholesteatoma comes out again in two > years, I need to do surgery at most two time. But what if there no > cholesteatoma anymore? In that case I dont need to the second surgery. > I really can not understand the doctor's mind. Maybe

he just wants to > make more money by doing unnecessary surgery to patient? > Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Autos.

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Autos.

[Guest guest]

Rich: That's good news for you. I hope this will happen to me. The hearing loss really brings me a lot of trouble. I have to ask other guys to repeat their words because I can not hear them clearly. It is really really bad when some friends are talking to you and you even dont notice that. Do you think I need to argue with the doctor and ask him why he doesnt tell me the details of the surgery right now? Is that will cause any bad effect on my further surgery?Benmcguyver98 <mr@...> wrote: Hi Ben, I've always been an advocate of during research before and work with a doctor/surgeon on the treatment strategy. I completely understand your position and would also be upset. I think it's a doctor's duty to discuss aspects and side effects of any treatment, especially surgery! Right now I'm about 10 weeks post-op. My hearing started returning about 5-1/2 week post-op. I haven't had any post-op audio tests yet; however, I can tell my hearing has improved over pre-op conditions. Before surgery, I lost about 35 db of hearing in my right ear, right now I would guess I'm about 25 db loss. Still not as good as my "good" ear, but definitely better than it was. Rich p.s. as a side note, if i lost confidence in my doctor and/or surgeon, i would definitely get someone new. to me, trust is a huge factor in healthcare! > > > > Hi, I did the surgery to remove the

cholesteatoma two weeks ago. This > > week the doctor suddenly told me that two earbones were taken out and > > I need to do another surgery to install my earbones after two years. I > > have a feeling of being cheated. Because before the surgery he never > > told me about removing my earbones. He said he did that because he > > want to make sure that there will no cholesteatoma anymore before > > installing the earbones. In his way, I need to do the surgery at > > least two times. > > I dont understand why he can not install my earbones back in the same > > surgery. In this way, even the cholesteatoma comes out again in two > > years, I need to do surgery at most two time. But what if there no > > cholesteatoma anymore? In that case I dont need to the second surgery. > > I really can not understand the doctor's mind. Maybe he just

wants to > > make more money by doing unnecessary surgery to patient? > > > > > > > > > --------------------------------- > Ahhh...imagining that irresistible "new car" smell? > Check outnew cars at Autos. > > --------------------------------- > Ahhh...imagining that irresistible "new car" smell? > Check outnew cars at Autos. >

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Autos.

[Guest guest]

Hi Ben,

When you first lose some of your hearing, it seems

really dramatic. I remember when I first lost my

hearing bones, I was kind of disoriented and irritable

because I had such a hard time hearing. It is amazing

how your body compensates though. I can't remember

how long it took, but my hearing loss became much less

noticable. I only really had problems in noisy

restaurants and identifying the direction a sound was

coming from (I would spin in circles when someone

yelled " Hey Laurel " ..kinda funny). It seems like the

chances of you getting your hearing back are pretty

good, but I hope it helps to realize you will adjust

in the meantime.

Laurel

--- ben hu <ben_hu30@...> wrote:

> Rich:

> That's good news for you. I hope this will happen

> to me. The hearing loss really brings me a lot of

> trouble. I have to ask other guys to repeat their

> words because I can not hear them clearly. It is

> really really bad when some friends are talking to

> you and you even dont notice that.

> Do you think I need to argue with the doctor and

> ask him why he doesnt tell me the details of the

> surgery right now? Is that will cause any bad effect

> on my further surgery?

>

> Ben

>

> mcguyver98 <mr@...> wrote:

> Hi Ben,

>

> I've always been an advocate of during research

> before and work with a

> doctor/surgeon on the treatment strategy. I

> completely understand

> your position and would also be upset. I think

> it's a doctor's duty

> to discuss aspects and side effects of any

> treatment, especially

> surgery! Right now I'm about 10 weeks post-op. My

> hearing started

> returning about 5-1/2 week post-op. I haven't had

> any post-op audio

> tests yet; however, I can tell my hearing has

> improved over pre-op

> conditions. Before surgery, I lost about 35 db of

> hearing in my right

> ear, right now I would guess I'm about 25 db loss.

> Still not as good

> as my " good " ear, but definitely better than it

> was.

>

> Rich

>

> p.s. as a side note, if i lost confidence in my

> doctor and/or surgeon,

> i would definitely get someone new. to me, trust

> is a huge factor in

> healthcare!

>

>

> > >

> > > Hi, I did the surgery to remove the

> cholesteatoma two weeks ago. This

> > > week the doctor suddenly told me that two

> earbones were taken out and

> > > I need to do another surgery to install my

> earbones after two

> years. I

> > > have a feeling of being cheated. Because

> before the surgery he never

> > > told me about removing my earbones. He said he

> did that because he

> > > want to make sure that there will no

> cholesteatoma anymore before

> > > installing the earbones. In his way, I need

> to do the surgery at

> > > least two times.

> > > I dont understand why he can not install my

> earbones back in the same

> > > surgery. In this way, even the cholesteatoma

> comes out again in two

> > > years, I need to do surgery at most two time.

> But what if there no

> > > cholesteatoma anymore? In that case I dont

> need to the second

> surgery.

> > > I really can not understand the doctor's mind.

> Maybe he just wants to

> > > make more money by doing unnecessary surgery

> to patient?

> > >

> >

> >

> >

> >

> >

> >

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

> > Ahhh...imagining that irresistible " new car "

> smell?

> > Check outnew cars at Autos.

> >

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

> > Ahhh...imagining that irresistible " new car "

> smell?

> > Check outnew cars at Autos.

> >

>

>

>

>

>

>

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

> Ahhh...imagining that irresistible " new car " smell?

> Check outnew cars at Autos.

__________________________________________________

[Guest guest]

Hi, Laurel I am appreciated your reply. I feel much better right now because I found lots of warm-hearted people tried to comfort me, and provided information I need. Now I am going to do is adjust my mood and try to act being a normal guy. Thanks for all the guys in this group who helped me!BenLaurel <uncw2@...> wrote: Hi Ben, When you first lose some of your hearing, it seems really dramatic. I remember when I first lost my hearing bones, I was kind of

disoriented and irritable because I had such a hard time hearing. It is amazing how your body compensates though. I can't remember how long it took, but my hearing loss became much less noticable. I only really had problems in noisy restaurants and identifying the direction a sound was coming from (I would spin in circles when someone yelled "Hey Laurel"..kinda funny). It seems like the chances of you getting your hearing back are pretty good, but I hope it helps to realize you will adjust in the meantime. Laurel --- ben hu <ben_hu30 > wrote: > Rich: > That's good news for you. I hope this will happen > to me. The hearing loss really brings me a lot of > trouble. I have to ask other guys to repeat their > words because I can not hear them clearly. It is > really really bad when some friends are talking to

> you and you even dont notice that. > Do you think I need to argue with the doctor and > ask him why he doesnt tell me the details of the > surgery right now? Is that will cause any bad effect > on my further surgery? > > Ben > > mcguyver98 <mrbellsouth (DOT) net> wrote: > Hi Ben, > > I've always been an advocate of during research > before and work with a > doctor/surgeon on the treatment strategy. I > completely understand > your position and would also be upset. I think > it's a doctor's duty > to discuss aspects and side effects of any > treatment, especially > surgery! Right now I'm about 10 weeks post-op. My > hearing started > returning about 5-1/2 week post-op. I haven't had > any post-op audio

> tests yet; however, I can tell my hearing has > improved over pre-op > conditions. Before surgery, I lost about 35 db of > hearing in my right > ear, right now I would guess I'm about 25 db loss. > Still not as good > as my "good" ear, but definitely better than it > was. > > Rich > > p.s. as a side note, if i lost confidence in my > doctor and/or surgeon, > i would definitely get someone new. to me, trust > is a huge factor in > healthcare! > > > > > > > > Hi, I did the surgery to remove the >

cholesteatoma two weeks ago. This > > > week the doctor suddenly told me that two > earbones were taken out and > > > I need to do another surgery to install my > earbones after two > years. I > > > have a feeling of being cheated. Because > before the surgery he never > > > told me about removing my earbones. He said he > did that because he > > > want to make sure that there will no > cholesteatoma anymore before > > > installing the earbones. In his way, I need > to do the surgery at > > > least two times. > > > I dont understand why he can not install my > earbones back in the same > > > surgery. In this way, even the cholesteatoma > comes out again in two > > > years, I need to do surgery at most two time. > But what if there no > > >

cholesteatoma anymore? In that case I dont > need to the second > surgery. > > > I really can not understand the doctor's mind. > Maybe he just wants to > > > make more money by doing unnecessary surgery > to patient? > > > > > > > > > > > > > > > > > --------------------------------- > > Ahhh...imagining that irresistible "new car" > smell? > > Check outnew cars at Autos. > > > > --------------------------------- > > Ahhh...imagining that irresistible "new car" > smell? > > Check outnew cars at Autos. > > > > > > > > >

--------------------------------- > Ahhh...imagining that irresistible "new car" smell? > Check outnew cars at Autos. __________________________________________________

[Guest guest]

Hi Ben,

I have had several surgeries and each one was different. A couple the Prosthetic was put in right away, another I had to wait several months to watch how my ear healed.

It would be easier on all of us if we were all the same and had the exact same surgeries and procedures. Unfortunately Ctoma is not that Black and White, it is a disease in the grey area. A Monster if you want to call it that.

I really understand how you feel about the not hearing part. It is easier on me now that I am used to it than before. A hard part for me was just accepting the fact that I had Ctoma and that I was Hearing Impaired. After reading about Ctoma and learning what it does is really scarey. This Website exists so that people can share whats going on with their own situations.

After I finally accepted I was having hearing issues and learned as much as I could I realized that I needed to do something to help myself. I took a Lip Reading class and that helped alot. You just have to make sure that the person you are talking to is facing you. It is still frustrating to have to ask someone to have to repeat themselves. I ususally try to tell people that I am Hearing impaired on whichever ear it is and for them to please talk to me in the other ear.

Remember, not eveyone is the same and or can be treated the same.

If it were me I would schedule a meeting with your Dr and ask him your questions. You need to remember that none of us on this site is an Ear Specialist, we are patients just like you.

I hope you'll be better soon.

Re: Re: Is it normal about surgery?

Rich: That's good news for you. I hope this will happen to me. The hearing loss really brings me a lot of trouble. I have to ask other guys to repeat their words because I can not hear them clearly. It is really really bad when some friends are talking to you and you even dont notice that. Do you think I need to argue with the doctor and ask him why he doesnt tell me the details of the surgery right now? Is that will cause any bad effect on my further surgery?Benmcguyver98 <mrbellsouth (DOT) net> wrote:

Hi Ben,I've always been an advocate of during research before and work with adoctor/surgeon on the treatment strategy. I completely understandyour position and would also be upset. I think it's a doctor's dutyto discuss aspects and side effects of any treatment, especiallysurgery! Right now I'm about 10 weeks post-op. My hearing startedreturning about 5-1/2 week post-op. I haven't had any post-op audiotests yet; however, I can tell my hearing has improved over pre-opconditions. Before surgery, I lost about 35 db of hearing in my rightear, right now I would guess I'm about 25 db loss. Still not as goodas my "good" ear, but definitely better than it was.Richp.s. as a side note, if i lost confidence in my doctor and/or surgeon,i would definitely get someone new. to me, trust is a huge factor inhealthcare!> >> > Hi, I did the surgery to remove the cholesteatoma two weeks ago. This> > week the doctor suddenly told me that two earbones were taken out and> > I need to do another surgery to install my earbones after twoyears. I> > have a feeling of being cheated. Because before the surgery he never> > told me about removing my earbones. He said he did that because he> > want to make sure that there will no cholesteatoma anymore before> > installing the earbones. In his way, I need to do the surgery at> > least two times. > > I dont understand why he can not install my earbones back in the same> > surgery. In this way, even the cholesteatoma comes out again in two> > years, I need to do surgery at most two time. But what if there no> > cholesteatoma anymore? In that case I dont need to the secondsurgery. > > I really can not understand the doctor's mind. Maybe he just wants to> > make more money by doing unnecessary surgery to patient?> >> > > > > > > ---------------------------------> Ahhh...imagining that irresistible "new car" smell?> Check outnew cars at Autos.> > ---------------------------------> Ahhh...imagining that irresistible "new car" smell?> Check outnew cars at Autos.>

Ahhh...imagining that irresistible "new car" smell?Check out new cars at Autos.

[Guest guest]

Ben,

I was so happy when I found this site!!!! I finally felt I wasn't alone and I had people to share my concerns and questions with. Unless a person has been through our problems they do not have a clue as to what it feels like.

You are not alone! Being upset is normal, so you are fine. Share with us whenever you need to.

Ingrid

Re: Re: Is it normal about surgery?

Hi, Laurel I am appreciated your reply. I feel much better right now because I found lots of warm-hearted people tried to comfort me, and provided information I need. Now I am going to do is adjust my mood and try to act being a normal guy. Thanks for all the guys in this group who helped me!BenLaurel <uncw2 > wrote:

Hi Ben,When you first lose some of your hearing, it seemsreally dramatic. I remember when I first lost myhearing bones, I was kind of disoriented and irritablebecause I had such a hard time hearing. It is amazinghow your body compensates though. I can't rememberhow long it took, but my hearing loss became much lessnoticable. I only really had problems in noisyrestaurants and identifying the direction a sound wascoming from (I would spin in circles when someoneyelled "Hey Laurel"..kinda funny). It seems like thechances of you getting your hearing back are prettygood, but I hope it helps to realize you will adjustin the meantime.Laurel--- ben hu <ben_hu30 > wrote:> Rich:> That's good news for you. I hope this will happen> to me. The hearing loss really brings me a lot of> trouble. I have to ask other guys to repeat their> words because I can not hear them clearly. It is> really really bad when some friends are talking to > you and you even dont notice that. > Do you think I need to argue with the doctor and> ask him why he doesnt tell me the details of the> surgery right now? Is that will cause any bad effect> on my further surgery?> > Ben> > mcguyver98 <mrbellsouth (DOT) net> wrote: > Hi Ben,> > I've always been an advocate of during research> before and work with a> doctor/surgeon on the treatment strategy. I> completely understand> your position and would also be upset. I think> it's a doctor's duty> to discuss aspects and side effects of any> treatment, especially> surgery! Right now I'm about 10 weeks post-op. My> hearing started> returning about 5-1/2 week post-op. I haven't had> any post-op audio> tests yet; however, I can tell my hearing has> improved over pre-op> conditions. Before surgery, I lost about 35 db of> hearing in my right> ear, right now I would guess I'm about 25 db loss.> Still not as good> as my "good" ear, but definitely better than it> was.> > Rich> > p.s. as a side note, if i lost confidence in my> doctor and/or surgeon,> i would definitely get someone new. to me, trust> is a huge factor in> healthcare!> > > > >> > > Hi, I did the surgery to remove the> cholesteatoma two weeks ago. This> > > week the doctor suddenly told me that two> earbones were taken out and> > > I need to do another surgery to install my> earbones after two> years. I> > > have a feeling of being cheated. Because> before the surgery he never> > > told me about removing my earbones. He said he> did that because he> > > want to make sure that there will no> cholesteatoma anymore before> > > installing the earbones. In his way, I need> to do the surgery at> > > least two times. > > > I dont understand why he can not install my> earbones back in the same> > > surgery. In this way, even the cholesteatoma> comes out again in two> > > years, I need to do surgery at most two time.> But what if there no> > > cholesteatoma anymore? In that case I dont> need to the second> surgery. > > > I really can not understand the doctor's mind.> Maybe he just wants to> > > make more money by doing unnecessary surgery> to patient?> > >> > > > > > > > > > > > > > ---------------------------------> > Ahhh...imagining that irresistible "new car"> smell?> > Check outnew cars at Autos.> > > > ---------------------------------> > Ahhh...imagining that irresistible "new car"> smell?> > Check outnew cars at Autos.> >> > > > > > > ---------------------------------> Ahhh...imagining that irresistible "new car" smell?> Check outnew cars at Autos.__________________________________________________