reconstruction surgery

[Guest guest]

In a message dated 07/27/2002 11:40:04 AM Eastern Daylight Time, carnetham@... writes:

Her hope is that she removed enough of it the first

time that it will not grow back.

Hello Carnetha,

Wow, first let me comment that it is pretty uncommon to hear an ENT referred to as "she", "her"...it is usually he/him. That's great!

I had my 3rd c-toma surgery in May & already know I'm headed for #4 this fall because my ENT (a "he"!) also left some cholesteatoma behind. It was too close to the inner ear and he didn't want to risk any inner ear/balance complications so he left it behind. He's hoping it will grow into a little ball & he can just "pop it out" next time, when he will also attempt to restore some hearing.

I guess I'm a little concerned about the statement I quoted at the top of this e-mail, re: hoping it won't grow back, although putting that with your mention of an abnormally wide ear canal I'm thinking you had canal wall down. Lynn & some of the others have had this (I'm "up") & can explain the differences for you much better than I. With wall down, she could remove the remainder in the office, I believe.

My ENTs have always told me that the chances of hearing restoration with canal wall down are lower, which may be what you are facing. May I suggest a vibrating pager? You mentioned that you can't hear your current one, with the vibrating pagers you feel them move instead. Best of luck, I hope your appt. goes well on Tuesday.

[Guest guest]

My ENT does not want to remove the reminder of the cholesteatoma

right now, because I had a hard time adjusting to the removal of the

first part of it. Her hope is that she removed enough of it the first

time that it will not grow back. When I started my first year of

medical school my hearing began to decrease tremendously. I was

taking notes and writing down incorrect information, so I went in for

a hearing test. As a chils I never could hear well in the ear and

failed all of my hearing test, but everytime my parents took me to

the ENT after the hearing test, the ENT's just attributed the hearing

loss to excess wax production and cleaned my ears and sent me home. I

was also prone to get swimmer's ear often if I ever allowed water to

get into my ears. This last ENT had enough sense to think that

something could be wrong and checked my ear with a hearing test,ENG,

caloric testing and of course CT scan and MRI. Her hypothesis is that

the cholesteatoma has been growing for years and this is why the

destruction was so massive.

She never mentioned reconstruction surgery to me at all,but thanks to

you all I will mention it on Tuesday during my check-up. She just

said that the hearing could not be restored. I think the vestibular

nerve itself to the one of the canals has died,but I am not sure so

this may be another problem with restoration of hearing. To bother

them now may set me up for more dizzy spells. But i will check into

it and let you knwo. I am also glad that I found some other people

who have had this problem also. I would like to know if your ear

canal was left abnormally wide also or is it normal? and if that is a

wall up canal or wall down and what is the difference?. And also I

don't have a mastoid bone on that side and I saw other members saying

that the surgeon smooths the mastoid and adds false material to it to

restore hearing. Do you think that would be a problem also?

> Hello Carnetha,

> You have certainly had more than your share of problems with

> cholesteatoma. Some of the members here have had similar problems

as what

> you describe. Being a medical student, you have a little extra

benifit in

> knowing the surgeons, etc... and being more aware of what options

are

> available to you. I am curious... you had the original surgery

last year,

> and it sounds like the c-toma was really extensive... what led to

it being

> diagnosed? Are they going to remove what is left of the c-toma? I

am sure

> you will get other responses and I hope you find what you need to

know.

> Lynn

> PS... what is it that precludes you from having the

reconstruction... is it

> because the semi circular canals were involved? if they patch the

canals,

> why can't they consider ossiculoplasty?

>

> post op problems

>

>

> > Hi. My surgery was in june of last year. I had CT and MRI and the

> > cholesteatoma had destroyed all my inner ear ossicles and reached

> > into inner ear. My ENT did not know the extent of it untill after

she

> > began the surgery. My surgery was 9 hours long and the ENT and

> > Nuerologist had to quit and leave the remainder of the

cholesteatoma

> > in my inner ear. It took about 4 months for my ear to heal

completely

> > and then in noveber and december of the same year i got viral

> > neuronitis(by the way never let anyone prescribe to you clonazepam

> > for dizziness)whihc resulted in bad dizziness and nystagmus. I

> > finally got over it at the end of december. Now everytime I get s

> > sinus flair up I get off balance and fluid builds in my head and

neck

> > and gives me headache and my neck stiffens some. I have tried

> > decongestants and Claritin and pseudofed and I take Antivert

during

> > these episodes. I would like to know if anyone else has had these

> > problems and if there are any suggestions. I will visit my ENT on

> > Tuesday for my 6 month follow up. And I cannot hear out of that

ear

> > and there is no hope of reconstruction because all ossicles were

> > destroyed as well as once of my semicircular canals, but the

hearing

> > part of the nerve still works. Right now I am having problems

hearing

> > my pager when it goes off and hearing heartbeats on my patients.

I am

> > currently a medical student and this frustrates me. If anyone has

any

> > advice on this please e-mail me.

> >

> > Thanks for your help

> > Carnetha

> >

> > Thanks for any help

> >

> >

> >

> >

[Guest guest]

Well I am even more impressed with my ENT now. I never thought of the

fact that it may be a male dominated profession. I think she did a

good job on the surgery, but my mother is still skeptical because we

really didn't know what this cholesteatoma was. I am going to take

the information I've learned and try to explain to her that this

thing may regrow and it is not the fault of my ENT. She does not want

to let my ENT now reoperate if I should have to have surgery again. I

am going to try a louder pager and then get the vibrating one next.

So has the cholesteatoma grown back because your doctor left some

behind and have you had any problems with dizziness since then?

Thanks for writing me back.

> In a message dated 07/27/2002 11:40:04 AM Eastern Daylight Time,

> carnetham@h... writes:

>

>

> > Her hope is that she removed enough of it the first

> > time that it will not grow back.

>

> Hello Carnetha,

>

> Wow, first let me comment that it is pretty uncommon to hear an ENT

referred

> to as " she " , " her " ...it is usually he/him. That's great!

>

> I had my 3rd c-toma surgery in May & already know I'm headed for #4

this fall

> because my ENT (a " he " !) also left some cholesteatoma behind. It

was too

> close to the inner ear and he didn't want to risk any inner

ear/balance

> complications so he left it behind. He's hoping it will grow into a

little

> ball & he can just " pop it out " next time, when he will also

attempt to

> restore some hearing.

>

> I guess I'm a little concerned about the statement I quoted at the

top of

> this e-mail, re: hoping it won't grow back, although putting that

with your

> mention of an abnormally wide ear canal I'm thinking you had canal

wall down.

> Lynn & some of the others have had this (I'm " up " ) & can explain

the

> differences for you much better than I. With wall down, she could

remove the

> remainder in the office, I believe.

>

> My ENTs have always told me that the chances of hearing restoration

with

> canal wall down are lower, which may be what you are facing. May I

suggest a

> vibrating pager? You mentioned that you can't hear your current

one, with the

> vibrating pagers you feel them move instead. Best of luck, I hope

your appt.

> goes well on Tuesday.

>

>

[Guest guest]

Hi,

I had a canal wall down, modified radical mastoidectomy/typanoplasty in May 02. As well I had a meatoplasty. My external ear canal opening is larger, but you don't notice it unless you look. I know it is bigger though. My ossicular chain was almost totally gone, I think I have a piece of my malleus left. I also had surgery in Feb, (where they found the c-toma), and somehow my ear got BURNED during the surgery... no one knows how it happened, or even what type of burn, ie chemical, thermal or electrical. My surgeon was very surprised when I went for my post op check and he saw it. He did not know what happened, but said he did not use the cautery, so that it couldn't be a cautery burn... anyway, I had a 3rd degree burn, along the ridge of my ear above the ear lobe, and I have lost the cartilage there. It took over 2 months to heal Anyway the burn is much more noticeable than the meatoplasty, and people don't seem to notice that...

I am not sure about what you say about your mastoid surgery. It is my understanding that they smooth out the inside of the mastoid bone... by removing the air cells, and any mucous membrane there.... so that it forms a bowl, but I believe the outside of the bone is left there... what would protect your head behind your ear if that was removed... If they fill that cavity with material , I think that is called a "mastoid obliteration", and it is done to eliminate the need to clean the mastoid. But it also means there will NEVER be any consideration to repairing the hearing... so it is a last resort for people who can't stand the cleanings but don't care about the hearing.

Your history is a lot like mine, and I am keeping a positive attitude about reconstruction. I have never had drainage, and my ear has healed well, so hopefully he'll be able to do it.

post op problems> > > > > > > Hi. My surgery was in june of last year. I had CT and MRI and the> > > cholesteatoma had destroyed all my inner ear ossicles and reached> > > into inner ear. My ENT did not know the extent of it untill after > she> > > began the surgery. My surgery was 9 hours long and the ENT and> > > Nuerologist had to quit and leave the remainder of the > cholesteatoma> > > in my inner ear. It took about 4 months for my ear to heal > completely> > > and then in noveber and december of the same year i got viral> > > neuronitis(by the way never let anyone prescribe to you clonazepam> > > for dizziness)whihc resulted in bad dizziness and nystagmus. I> > > finally got over it at the end of december. Now everytime I get s> > > sinus flair up I get off balance and fluid builds in my head and > neck> > > and gives me headache and my neck stiffens some. I have tried> > > decongestants and Claritin and pseudofed and I take Antivert > during> > > these episodes. I would like to know if anyone else has had these> > > problems and if there are any suggestions. I will visit my ENT on> > > Tuesday for my 6 month follow up. And I cannot hear out of that > ear> > > and there is no hope of reconstruction because all ossicles were> > > destroyed as well as once of my semicircular canals, but the > hearing> > > part of the nerve still works. Right now I am having problems > hearing> > > my pager when it goes off and hearing heartbeats on my patients. > I am> > > currently a medical student and this frustrates me. If anyone has > any> > > advice on this please e-mail me.> > >> > > Thanks for your help> > > Carnetha> > >> > > Thanks for any help> > >> > >> > >> > >

[Guest guest]

Hi Lynn,

Did you say that you had a mastoid obliteration? I think that is what

I had, but I will ask on my next visit. I assume that this is it,

because before I had the surgery she told me that my post- op visits

would be every week untill the ear healed and then one in 6 months

and then one every year. If you did have the mastoid obliteration,

are you still considering reconstruction and what will be done? And

I'm sorry to hear about the burn. If you had a good surgeon, there

should barely be a scar. That is one thing I can say she did well. I

really don't have a noticeable scar.

Carnetha

> >

> >

> > > Hello Carnetha,

> > > You have certainly had more than your share of problems with

> > > cholesteatoma. Some of the members here have had similar

problems

> > as what

> > > you describe. Being a medical student, you have a little extra

> > benifit in

> > > knowing the surgeons, etc... and being more aware of what

options

> > are

> > > available to you. I am curious... you had the original surgery

> > last year,

> > > and it sounds like the c-toma was really extensive... what led

to

> > it being

> > > diagnosed? Are they going to remove what is left of the c-

toma? I

> > am sure

> > > you will get other responses and I hope you find what you need

to

> > know.

> > > Lynn

> > > PS... what is it that precludes you from having the

> > reconstruction... is it

> > > because the semi circular canals were involved? if they patch

the

> > canals,

> > > why can't they consider ossiculoplasty?

> > >

> > > post op problems

> > >

> > >

> > > > Hi. My surgery was in june of last year. I had CT and MRI and

the

> > > > cholesteatoma had destroyed all my inner ear ossicles and

reached

> > > > into inner ear. My ENT did not know the extent of it untill

after

> > she

> > > > began the surgery. My surgery was 9 hours long and the ENT and

> > > > Nuerologist had to quit and leave the remainder of the

> > cholesteatoma

> > > > in my inner ear. It took about 4 months for my ear to heal

> > completely

> > > > and then in noveber and december of the same year i got viral

> > > > neuronitis(by the way never let anyone prescribe to you

clonazepam

> > > > for dizziness)whihc resulted in bad dizziness and nystagmus. I

> > > > finally got over it at the end of december. Now everytime I

get s

> > > > sinus flair up I get off balance and fluid builds in my head

and

> > neck

> > > > and gives me headache and my neck stiffens some. I have tried

> > > > decongestants and Claritin and pseudofed and I take Antivert

> > during

> > > > these episodes. I would like to know if anyone else has had

these

> > > > problems and if there are any suggestions. I will visit my

ENT on

> > > > Tuesday for my 6 month follow up. And I cannot hear out of

that

> > ear

> > > > and there is no hope of reconstruction because all ossicles

were

> > > > destroyed as well as once of my semicircular canals, but the

> > hearing

> > > > part of the nerve still works. Right now I am having problems

> > hearing

> > > > my pager when it goes off and hearing heartbeats on my

patients.

> > I am

> > > > currently a medical student and this frustrates me. If anyone

has

> > any

> > > > advice on this please e-mail me.

> > > >

> > > > Thanks for your help

> > > > Carnetha

> > > >

> > > > Thanks for any help

> > > >

> > > >

> > > >

> > > >

[Guest guest]

In a message dated 07/27/2002 2:23:07 PM Eastern Daylight Time, carnetham@... writes:

So has the cholesteatoma grown back because your doctor left some

behind and have you had any problems with dizziness since then?

Hi - he's expecting it to grow back & form a little ball, but he couldn't see any on my post-op earlier this month. The next surgery will be 4 - 6 months after the last one (5/02) so I guess he thinks it will have had enough time by then.

I thankfully have not been troubled by dizziness since the most recent surgery although I was bothered by it in the leadup to surgery. The c-toma this time was "massive" (his term), filling the middle ear & mastoid cavity. All my bones of hearing are gone except the poor bedraggled stapes, which he left the c-toma on as it was backing up onto the inner ear. This was my 3rd cholesteatoma removal op but with a different ENT this time. This ENT feels that we have been dealing with the same aggressive ("recalcitrant", he says) cholesteatoma all along & not a new occurence.

Interestingly, although my ENT told me to expect deafness in that ear, I do have some hearing. Not much, but a little.

This is a good link (provided by Michele, I think) which gets into the canal wall up vs. down a bit. Cholesteatoma: Pathology & Surgical Mgt.(Feb.1999)

[Guest guest]

Hi Carnetha,

NO I did NOT have a mastoid obliteration... that is a last resort for people

who don't want to have their ears cleaned routinely. There are probably

other reasons for it, but that is the one that comes to mind first... The

most important thing is that reconstruction is NOT an option for people who

have a mastoid obliteration.

I had a canal wall down, modified radical mastoidectomy....

I am definitely going to have the reconstruction if my surgeon will do

it. I will see him in the spring about this. He wont try it now because it

is too soon. I live in Northern Ontario, and he is in Toronto, so we have

planned it for after the bad winter weather.

My ENT is the chief of Otolarygology, and he is also an

otologist/neurotologist. He is very very good, and I dont think the burn

was his fault... although I was asleep when it happened. The scar from the

burn is still red, but it is mostly healed. My incision behind my ear has

healed well, and I also have a small insion on my ear from the first

surgery. That one is not very noticeable either.

Lynn

post op problems

> > > >

> > > >

> > > > > Hi. My surgery was in june of last year. I had CT and MRI and

> the

> > > > > cholesteatoma had destroyed all my inner ear ossicles and

> reached

> > > > > into inner ear. My ENT did not know the extent of it untill

> after

> > > she

> > > > > began the surgery. My surgery was 9 hours long and the ENT and

> > > > > Nuerologist had to quit and leave the remainder of the

> > > cholesteatoma

> > > > > in my inner ear. It took about 4 months for my ear to heal

> > > completely

> > > > > and then in noveber and december of the same year i got viral

> > > > > neuronitis(by the way never let anyone prescribe to you

> clonazepam

> > > > > for dizziness)whihc resulted in bad dizziness and nystagmus. I

> > > > > finally got over it at the end of december. Now everytime I

> get s

> > > > > sinus flair up I get off balance and fluid builds in my head

> and

> > > neck

> > > > > and gives me headache and my neck stiffens some. I have tried

> > > > > decongestants and Claritin and pseudofed and I take Antivert

> > > during

> > > > > these episodes. I would like to know if anyone else has had

> these

> > > > > problems and if there are any suggestions. I will visit my

> ENT on

> > > > > Tuesday for my 6 month follow up. And I cannot hear out of

> that

> > > ear

> > > > > and there is no hope of reconstruction because all ossicles

> were

> > > > > destroyed as well as once of my semicircular canals, but the

> > > hearing

> > > > > part of the nerve still works. Right now I am having problems

> > > hearing

> > > > > my pager when it goes off and hearing heartbeats on my

> patients.

> > > I am

> > > > > currently a medical student and this frustrates me. If anyone

> has

> > > any

> > > > > advice on this please e-mail me.

> > > > >

> > > > > Thanks for your help

> > > > > Carnetha

> > > > >

> > > > > Thanks for any help

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

Hello,

It's Michele, I'm still here, just kicking back and watching. When you explain to your mother, you might want to tell her that multiple surgeries for c-toma are not uncommon.

My husbands doc did leave some c-toma during the first surgery for removal during the second. He was unable to get all of the c-toma due to the fact that the c-toma was on the facial nerve and the monitor kept going off. It was his hope that it would grow into a ball and be easier to remove during the second surgery. It turned out not to matter as c-toma had completely invaded the mastoid and he had a canal wall down.

Michele

beaut42004 wrote:

She does not want to let my ENT now reoperate if I should have to have surgery again.

So has the cholesteatoma grown back because your doctor left some behind and have you had any problems with dizziness since then? Thanks for writing me back.> In a message dated 07/27/2002 11:40:04 AM Eastern Daylight Time, > carnetham@h... writes:> > > > Her hope is that she removed enough of it the first > > time that it will not grow back.> > Hello Carnetha, > > Wow, first let me comment that it is pretty uncommon to hear an ENT referred > to as "she", "her"...it is usually he/him. That's great!> > I had my 3rd c-toma surgery in May & already know I'm headed for #4 this fall > because my ENT (a "he"!) also left some cholesteatoma behind. It was too > close to the inner ear and he didn't want to risk any inner ear/balance > complications so he left it behind. He's hoping it will grow into a little > ball & he can just "pop it out" next time, when he will also attempt to > restore some hearing.> > I guess I'm a little concerned about the statement I quoted at the top of > this e-mail, re: hoping it won't grow back, although putting that with your > mention of an abnormally wide ear canal I'm thinking you had canal wall down. > Lynn & some of the others have had this (I'm "up") & can explain the > differences for you much better than I. With wall down, she could remove the > remainder in the office, I believe.> > My ENTs have always told me that the chances of hearing restoration with > canal wall down are lower, which may be what you are facing. May I suggest a > vibrating pager? You mentioned that you can't hear your current one, with the > vibrating pagers you feel them move instead. Best of luck, I hope your appt. > goes well on Tuesday.> >

[Guest guest]

Hi Lynn

I'm afraid I have no idea why you wouldn't have a exposed mastoid cavity following a canal wall down operation. Maybe it just goes to show that the definitions of these surgeries that we read about have little bearing on what the doctor actually needs to do during the operation. Anyway, it sounds like good news that the hearing restoration can go ahead. I really hope that's a success for you.

Phil

[Guest guest]

Hi Phil,

Thanks. I have been wondering if it is the way I asked the question? The opening may not be to the middle ear, as I assumed, but into the mastoid... I thought that the canal wall down, mastoidectomy created a large empty area, which emcompassed the mastoid bowl and the middle ear....

Your surgery is coming up pretty soon... I hope it is successful as well.

Lynn

-- Re: reconstruction surgery

Hi Lynn

I'm afraid I have no idea why you wouldn't have a exposed mastoid cavity following a canal wall down operation. Maybe it just goes to show that the definitions of these surgeries that we read about have little bearing on what the doctor actually needs to do during the operation. Anyway, it sounds like good news that the hearing restoration can go ahead. I really hope that's a success for you.

Phil

[Guest guest]

Hi all,

Well, my reconstruction surgery is scheduled for Tuesday. My dr.

said that it will be titanium that he uses to replace the bones.

According to him this surgery will be " a walk in the park " compared

to the last 2 I had. Anyways, having said that I was wondering if

anybody could tell me how long their surgery lasted and how they felt

afterwards. The doc wouldn't tell me how long to expect for surgery

other than " it will as long as it takes and not a second longer. " Of

course he was being funny trying to put me at east but I never did get

an answer from him..LOL. He did tell me also that since I have no

hearing in my right ear that while there is packing in my left ear I

will be pretty much deaf. I'm not looking forward to that part of it

but I'm very excited at the thought of being able to hear better than

what I am hearing right now which is profound hearing loss in my right

ear and severe to profound in my left ear. So, maybe I'll be hearing

again soon out of my left ear!!!!!

chin up

Jo

[Guest guest]

Hi all,

Well I had my reconstruction surgery yesterday. The surgery only took about an hour and then some in the recovery room. The doc said everything went well except for one of the titanium prothesis wasn't able to be placed exactly where he wanted it. What this means is that I might not get as much hearing back as first hoped. I was in quite a bit of pain yesterday. I actually had to take the pain pills!! Anyways, I'm feeling better today. It's still frustrating not being able to hear but hopefully in a few weeks things will be better. Good luck to all the newbies!!!

chin up

Jo

From: tink442002 <tink442002@...>Subject: reconstruction surgerycholesteatoma Date: Wednesday, September 17, 2008, 5:41 PM

Hi all,Well, my reconstruction surgery is scheduled for Tuesday. My dr. said that it will be titanium that he uses to replace the bones. According to him this surgery will be " a walk in the park " compared to the last 2 I had. Anyways, having said that I was wondering if anybody could tell me how long their surgery lasted and how they felt afterwards. The doc wouldn't tell me how long to expect for surgery other than"it will as long as it takes and not a second longer." Of course he was being funny trying to put me at east but I never did get an answer from him..LOL. He did tell me also that since I have no hearing in my right ear that while there is packing in my left ear I will be pretty much deaf. I'm not looking forward to that part of it but I'm very excited at the thought of being able to hear better than what I am hearing right now which is profound hearing loss in my right ear and

severe to profound in my left ear. So, maybe I'll be hearing again soon out of my left ear!!!!! chin upJo