Re: Radical mastoidectomy...anyone else?

[Guest guest]

Hope what I relay helps in anyway to ease your concern. This past Monday was my annual followup for my canal wall down, radical matoidectomy. When I was confirmed of having a c-toma in January 2007, this infection/tumor had been there for roughly a year and a half and had eroded two hearing bones and was pressing against the membrane protecting the brain, the dura. Options I had was this procedure or canal wall up, but with a higher risk of reoccurrence. I of course chose the CWD. Yes, I too had a big gaping hole and incision on the side of my head. I also wore the cup loosely packed with gauze to absorb the ooze. Trust me it does stop, the incision heals, better if you treat daily with bactracin. After a few months the swelling from the

incision does receed and goes back to normal.

In my case, during surgery most surgeons don't do this, but I also had reconstruction done on the two eroded hearing bones. I was in surgery for eight hours instead of the four most have gone through with a six month followup to repair the bones. I have near normal hearing restored.

I am happy to report that I am still c-toma free, but still have issues with my ear drum retracting. I am told to inflate my ears at least once a day.

As for the appearance, my co-workers after telling them of my year follow-up and showing pictures to them a day after my surgery, they are amazed at how well it healed. They couldn't tell that I had surgery. Only if you look close at the ear the canal opening is a little bigger but not noticable.

Keep the faith, I did.

-Nate

Radical mastoidectomy...anyone else?

HiI haven't posted in quite awhile. My son has had problems since birthwith his ears, infections, cholesteatoma. Finally in the last year hedeveloped a very resistant staph infection in his left middleear/mastoid area. He had already had several surgeries forcholesteatoma and infection, all canal wall up procedures. This timewas different. The Dr went in, intending to do a modified canal walldown and ended up having to do a full radical mastoidectomy. Theinfection had gotten too close to his brain and it was do this or wemay have lost him, he had run out of options. No matter how much weread and how much the Dr tried to prepare us for how this was going tolook, I get weak in the knees when I see his ear uncovered. Fridaywill be 3 weeks. Has anyone on this board had this type of surgery?Does it ever start to look more normal inside of the ear? Right now itjust looks like an gaping open wound. He

is still having to wear a cupover it at night because it's not healed yet, plus when he goes to hiscollege classes he wears the cup so it doesn't bother the peoplearound him when it drains.

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Nate

Start the habit to chew the chewing gum several times a day, it will keep ur E-tube patent and ventilate middle ear

Arun

On 5/1/08, Wann <nwann_2000@...> wrote:

Hope what I relay helps in anyway to ease your concern. This past Monday was my annual followup for my canal wall down, radical matoidectomy. When I was confirmed of having a c-toma in January 2007, this infection/tumor had been there for roughly a year and a half and had eroded two hearing bones and was pressing against the membrane protecting the brain, the dura. Options I had was this procedure or canal wall up, but with a higher risk of reoccurrence. I of course chose the CWD. Yes, I too had a big gaping hole and incision on the side of my head. I also wore the cup loosely packed with gauze to absorb the ooze. Trust me it does stop, the incision heals, better if you treat daily with bactracin. After a few months the swelling from the incision does receed and goes back to normal.

In my case, during surgery most surgeons don't do this, but I also had reconstruction done on the two eroded hearing bones. I was in surgery for eight hours instead of the four most have gone through with a six month followup to repair the bones. I have near normal hearing restored.

I am happy to report that I am still c-toma free, but still have issues with my ear drum retracting. I am told to inflate my ears at least once a day.

As for the appearance, my co-workers after telling them of my year follow-up and showing pictures to them a day after my surgery, they are amazed at how well it healed. They couldn't tell that I had surgery. Only if you look close at the ear the canal opening is a little bigger but not noticable.

Keep the faith, I did.

-Nate

Radical mastoidectomy...anyone else?

HiI haven't posted in quite awhile. My son has had problems since birthwith his ears, infections, cholesteatoma. Finally in the last year hedeveloped a very resistant staph infection in his left middle

ear/mastoid area. He had already had several surgeries forcholesteatoma and infection, all canal wall up procedures. This timewas different. The Dr went in, intending to do a modified canal walldown and ended up having to do a full radical mastoidectomy. The

infection had gotten too close to his brain and it was do this or wemay have lost him, he had run out of options. No matter how much weread and how much the Dr tried to prepare us for how this was going tolook, I get weak in the knees when I see his ear uncovered. Friday

will be 3 weeks. Has anyone on this board had this type of surgery?Does it ever start to look more normal inside of the ear? Right now itjust looks like an gaping open wound. He is still having to wear a cupover it at night because it's not healed yet, plus when he goes to his

college classes he wears the cup so it doesn't bother the peoplearound him when it drains.

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

I haven't posted in quite awhile. My son has had problems since birth

with his ears, infections, cholesteatoma. Finally in the last year he

developed a very resistant staph infection in his left middle

ear/mastoid area. He had already had several surgeries for

cholesteatoma and infection, all canal wall up procedures. This time

was different. The Dr went in, intending to do a modified canal wall

down and ended up having to do a full radical mastoidectomy. The

infection had gotten too close to his brain and it was do this or we

may have lost him, he had run out of options. No matter how much we

read and how much the Dr tried to prepare us for how this was going to

look, I get weak in the knees when I see his ear uncovered. Friday

will be 3 weeks. Has anyone on this board had this type of surgery?

Does it ever start to look more normal inside of the ear? Right now it

just looks like an gaping open wound. He is still having to wear a cup

over it at night because it's not healed yet, plus when he goes to his

college classes he wears the cup so it doesn't bother the people

around him when it drains.

Hi

I've had this surgery. I think that once upon a time this was the only type

of surgery availabe for ctoma but since the arrival of the " modified " it's

become less common, at least in the Western world. I think it's generally

reserved for cases where the ear is already well and truly trashed and/or

there are possible complications. In my case, they found that the top of my

ear had collapsed, a hole through the bottom, a dehiscent facial nerve and a

labyrinthine fistula. They also found that my eardrum and middle ear bones

were already completely missing, having dissolved away somewhere.

I think that what you're looking at from the outside as an enlarged opening

is possibly more to do with the canal widening meatoplasty which is done in

conjunction with the mastoidectomy. I was told that radical mastoidectomy

basically leaves the ear as a flask-like shape where the ear canal, mastoid

and midlde ear form one contiguous space. If there are any ossicles or

eardrum, there would be no attempt to conserve them as there is with a

modified radical. Hence there would be no air conduction hearing.

In my experience, it felt like someone had left a window open on the side of

my head. If I let the cold or wind get in there it would seriously affect my

balance. I needed to keep my ears covered much of the time. When I asked my

surgeon how long it would take to heal properly, he told me six months.

Oddly enough, I still kept getting ctoma reappearing in this ear despite the

fact that there was nothing much left in there. I was originally diagnosed

with a double problem of middlle ear and canal ctoma and the stuff kept

resurfacing because it had somehow embedded itself in the bony wall

structures around my ear. I used to have to along to the clinic once a

month to get the disease vacuumed and scraped out and I also went through a

couple more surgeries.

After couple of years, things had settled down and my doctor decided that

the open ear was a liability and wanted to try and close it up ie seal off

the middle ear again. That's another long story, but it did improve things a

lot for me.

Phil

[Guest guest]

Yep...I had mine 40+ years ago. I too had no middle ear bones left and have a wonderful crater where my ear canal should be. All I really know about my surgery is that they pealed off my ear, carved out my mastoid and cleaned out the infection that I had. I got a plug of plastic to repalce the bones, and have no eardrum to speak of.

It will look icky now, but, will heal. I was 4 when I had mine and 47 now. It doesn't stop me from doing anything I want to do, except swim deeper than 10 feet (I get pain when I try to go down that far).

My only real problem is that I can't hear high pitched noices or birds calling out of my left ear, and, occationally the cat gets lost in my ear canal (JOKE!).

Good luck!

Walter in Savannah

On Thu, May 1, 2008 at 1:38 PM, Phil <pxmorris@...> wrote:

I haven't posted in quite awhile. My son has had problems since birthwith his ears, infections, cholesteatoma. Finally in the last year hedeveloped a very resistant staph infection in his left middleear/mastoid area. He had already had several surgeries for

cholesteatoma and infection, all canal wall up procedures. This timewas different. The Dr went in, intending to do a modified canal walldown and ended up having to do a full radical mastoidectomy. Theinfection had gotten too close to his brain and it was do this or we

may have lost him, he had run out of options. No matter how much weread and how much the Dr tried to prepare us for how this was going tolook, I get weak in the knees when I see his ear uncovered. Fridaywill be 3 weeks. Has anyone on this board had this type of surgery?

Does it ever start to look more normal inside of the ear? Right now itjust looks like an gaping open wound. He is still having to wear a cupover it at night because it's not healed yet, plus when he goes to his

college classes he wears the cup so it doesn't bother the peoplearound him when it drains.HiI've had this surgery. I think that once upon a time this was the only type of surgery availabe for ctoma but since the arrival of the " modified " it's

become less common, at least in the Western world. I think it's generally reserved for cases where the ear is already well and truly trashed and/or there are possible complications. In my case, they found that the top of my

ear had collapsed, a hole through the bottom, a dehiscent facial nerve and a labyrinthine fistula. They also found that my eardrum and middle ear bones were already completely missing, having dissolved away somewhere.

I think that what you're looking at from the outside as an enlarged opening is possibly more to do with the canal widening meatoplasty which is done in conjunction with the mastoidectomy. I was told that radical mastoidectomy

basically leaves the ear as a flask-like shape where the ear canal, mastoid and midlde ear form one contiguous space. If there are any ossicles or eardrum, there would be no attempt to conserve them as there is with a

modified radical. Hence there would be no air conduction hearing.In my experience, it felt like someone had left a window open on the side of my head. If I let the cold or wind get in there it would seriously affect my

balance. I needed to keep my ears covered much of the time. When I asked my surgeon how long it would take to heal properly, he told me six months.Oddly enough, I still kept getting ctoma reappearing in this ear despite the

fact that there was nothing much left in there. I was originally diagnosed with a double problem of middlle ear and canal ctoma and the stuff kept resurfacing because it had somehow embedded itself in the bony wall

structures around my ear. I used to have to along to the clinic once a month to get the disease vacuumed and scraped out and I also went through a couple more surgeries.After couple of years, things had settled down and my doctor decided that

the open ear was a liability and wanted to try and close it up ie seal off the middle ear again. That's another long story, but it did improve things a lot for me.Phil -- Remember: If you light a man a fire, you warm him for the night.

If you light a man ON fire, you warm him for the rest of his life.

[Guest guest]

Thanks for the replies. I am normally not squeamish, but this has

really shaken me. I am hoping once it actually heals it will look and

feel a lot better for him. We really had no choice, the mess in that

ear had gotten so out of control this had to be done. It's the

somewhat bloody, gaping hole that is the worst. I would have thought

by 3 wks post surgery it would look a lot better. He goes back next

week and hopefully things are actually healing in there and the

infection will be gone for good (and no more cholesteatoma, either)!

>

> > I haven't posted in quite awhile. My son has had problems since

birth

> > with his ears, infections, cholesteatoma. Finally in the last year he

> > developed a very resistant staph infection in his left middle

> > ear/mastoid area. He had already had several surgeries for

> > cholesteatoma and infection, all canal wall up procedures. This time

> > was different. The Dr went in, intending to do a modified canal wall

> > down and ended up having to do a full radical mastoidectomy. The

> > infection had gotten too close to his brain and it was do this or we

> > may have lost him, he had run out of options. No matter how much we

> > read and how much the Dr tried to prepare us for how this was going to

> > look, I get weak in the knees when I see his ear uncovered. Friday

> > will be 3 weeks. Has anyone on this board had this type of surgery?

> > Does it ever start to look more normal inside of the ear? Right now it

> > just looks like an gaping open wound. He is still having to wear a cup

> > over it at night because it's not healed yet, plus when he goes to his

> > college classes he wears the cup so it doesn't bother the people

> > around him when it drains.

> >

> > Hi

> >

> > I've had this surgery. I think that once upon a time this was the

only type

> >

> > of surgery availabe for ctoma but since the arrival of the

" modified " it's

> > become less common, at least in the Western world. I think it's

generally

> > reserved for cases where the ear is already well and truly trashed

and/or

> > there are possible complications. In my case, they found that the

top of my

> >

> > ear had collapsed, a hole through the bottom, a dehiscent facial

nerve and

> > a

> > labyrinthine fistula. They also found that my eardrum and middle

ear bones

> > were already completely missing, having dissolved away somewhere.

> >

> > I think that what you're looking at from the outside as an

enlarged opening

> >

> > is possibly more to do with the canal widening meatoplasty which

is done in

> >

> > conjunction with the mastoidectomy. I was told that radical

mastoidectomy

> > basically leaves the ear as a flask-like shape where the ear

canal, mastoid

> >

> > and midlde ear form one contiguous space. If there are any ossicles or

> > eardrum, there would be no attempt to conserve them as there is with a

> > modified radical. Hence there would be no air conduction hearing.

> >

> > In my experience, it felt like someone had left a window open on

the side

> > of

> > my head. If I let the cold or wind get in there it would seriously

affect

> > my

> > balance. I needed to keep my ears covered much of the time. When I

asked my

> >

> > surgeon how long it would take to heal properly, he told me six

months.

> >

> > Oddly enough, I still kept getting ctoma reappearing in this ear

despite

> > the

> > fact that there was nothing much left in there. I was originally

diagnosed

> > with a double problem of middlle ear and canal ctoma and the stuff

kept

> > resurfacing because it had somehow embedded itself in the bony wall

> > structures around my ear. I used to have to along to the clinic once a

> > month to get the disease vacuumed and scraped out and I also went

through a

> >

> > couple more surgeries.

> >

> > After couple of years, things had settled down and my doctor

decided that

> > the open ear was a liability and wanted to try and close it up ie

seal off

> > the middle ear again. That's another long story, but it did

improve things

> > a

> > lot for me.

> >

> > Phil

> >

> >

> >

>

>

>

> --

> Remember: If you light a man a fire, you warm him for the night.

>

> If you light a man ON fire, you warm him for the rest of his life.

>

[Guest guest]

I had a modified radical about a year and a half ago. In my case the ear canal was widened up a good bit. It was really something i noticed when it was first done. My doctor gave me some special plugs to keep it open for like two months post op. But after about 6 months it was barely noticable. Im sure your sons will be much the same once he heals up. Mine you have to look really close to notice it.

On 5/1/08, busymomof3teens <busymomof3teens@...> wrote:

Thanks for the replies. I am normally not squeamish, but this hasreally shaken me. I am hoping once it actually heals it will look andfeel a lot better for him. We really had no choice, the mess in thatear had gotten so out of control this had to be done. It's the

somewhat bloody, gaping hole that is the worst. I would have thoughtby 3 wks post surgery it would look a lot better. He goes back nextweek and hopefully things are actually healing in there and theinfection will be gone for good (and no more cholesteatoma, either)!

> > > I haven't posted in quite awhile. My son has had problems sincebirth

> > with his ears, infections, cholesteatoma. Finally in the last year he> > developed a very resistant staph infection in his left middle> > ear/mastoid area. He had already had several surgeries for

> > cholesteatoma and infection, all canal wall up procedures. This time> > was different. The Dr went in, intending to do a modified canal wall> > down and ended up having to do a full radical mastoidectomy. The

> > infection had gotten too close to his brain and it was do this or we> > may have lost him, he had run out of options. No matter how much we> > read and how much the Dr tried to prepare us for how this was going to

> > look, I get weak in the knees when I see his ear uncovered. Friday> > will be 3 weeks. Has anyone on this board had this type of surgery?> > Does it ever start to look more normal inside of the ear? Right now it

> > just looks like an gaping open wound. He is still having to wear a cup> > over it at night because it's not healed yet, plus when he goes to his> > college classes he wears the cup so it doesn't bother the people

> > around him when it drains.> >> > Hi> >> > I've had this surgery. I think that once upon a time this was theonly type> >> > of surgery availabe for ctoma but since the arrival of the

" modified " it's> > become less common, at least in the Western world. I think it'sgenerally> > reserved for cases where the ear is already well and truly trashedand/or> > there are possible complications. In my case, they found that the

top of my> >> > ear had collapsed, a hole through the bottom, a dehiscent facialnerve and> > a> > labyrinthine fistula. They also found that my eardrum and middleear bones

> > were already completely missing, having dissolved away somewhere.> >> > I think that what you're looking at from the outside as anenlarged opening> >> > is possibly more to do with the canal widening meatoplasty which

is done in> >> > conjunction with the mastoidectomy. I was told that radicalmastoidectomy> > basically leaves the ear as a flask-like shape where the earcanal, mastoid> >

> > and midlde ear form one contiguous space. If there are any ossicles or> > eardrum, there would be no attempt to conserve them as there is with a> > modified radical. Hence there would be no air conduction hearing.

> >> > In my experience, it felt like someone had left a window open onthe side> > of> > my head. If I let the cold or wind get in there it would seriouslyaffect> > my

> > balance. I needed to keep my ears covered much of the time. When Iasked my> >> > surgeon how long it would take to heal properly, he told me sixmonths.> >> > Oddly enough, I still kept getting ctoma reappearing in this ear

despite> > the> > fact that there was nothing much left in there. I was originallydiagnosed> > with a double problem of middlle ear and canal ctoma and the stuffkept> > resurfacing because it had somehow embedded itself in the bony wall

> > structures around my ear. I used to have to along to the clinic once a> > month to get the disease vacuumed and scraped out and I also wentthrough a> >> > couple more surgeries.

> >> > After couple of years, things had settled down and my doctordecided that> > the open ear was a liability and wanted to try and close it up ieseal off> > the middle ear again. That's another long story, but it did

improve things> > a> > lot for me.> >> > Phil> >> > > >> > > > -- > Remember: If you light a man a fire, you warm him for the night.

> > If you light a man ON fire, you warm him for the rest of his life.>

[Guest guest]

Hey Nate, glad to hear you are doing well. I'm 3 weeks post-op now

myself, and my life is pretty much back to normal.

>

> Hope what I relay helps in anyway to ease your concern.  This past

Monday was my annual followup for my canal wall down, radical

matoidectomy.  When I was confirmed of having a c-toma in January

2007, this infection/tumor had been there for roughly a year and a

half and had eroded two hearing bones and was pressing against the

membrane protecting the brain, the dura.  Options I had was this

procedure or canal wall up, but with a higher risk of reoccurrence. 

I of course chose the CWD.  Yes, I too had a big gaping hole and

incision on the side of my head.  I also wore the cup loosely packed

with gauze to absorb the ooze.  Trust me it does stop, the incision

heals, better if you treat daily with bactracin.  After a few months

the swelling from the incision does receed and goes back to normal.

> In my case, during surgery most surgeons don't do this, but I also

had reconstruction done on the two eroded hearing bones.  I was in

surgery for eight hours instead of the four most have gone through

with a six month followup to repair the bones.  I have near normal

hearing restored.

> I am happy to report that I am still c-toma free, but still have

issues with my ear drum retracting.  I am told to inflate my ears at

least once a day.

> As for the appearance, my co-workers after telling them of my year

follow-up and showing pictures to them a day after my surgery, they

are amazed at how well it healed.  They couldn't tell that I had

surgery.  Only if you look close at the ear the canal opening is a

little bigger but not noticable.

> Keep the faith, I did.

> -Nate

>

>

>

> Radical mastoidectomy...anyone else?

>

>

> Hi

> I haven't posted in quite awhile. My son has had problems since

birth

> with his ears, infections, cholesteatoma. Finally in the last year

he

> developed a very resistant staph infection in his left middle

> ear/mastoid area. He had already had several surgeries for

> cholesteatoma and infection, all canal wall up procedures. This time

> was different. The Dr went in, intending to do a modified canal wall

> down and ended up having to do a full radical mastoidectomy. The

> infection had gotten too close to his brain and it was do this or we

> may have lost him, he had run out of options. No matter how much we

> read and how much the Dr tried to prepare us for how this was going

to

> look, I get weak in the knees when I see his ear uncovered. Friday

> will be 3 weeks. Has anyone on this board had this type of surgery?

> Does it ever start to look more normal inside of the ear? Right now

it

> just looks like an gaping open wound. He is still having to wear a

cup

> over it at night because it's not healed yet, plus when he goes to

his

> college classes he wears the cup so it doesn't bother the people

> around him when it drains.

>

>

>

>

>

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> know-it-all with Mobile. Try it now.

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