Re: Radical Mastoidectomy for kids

[Guest guest]

I think there was a section about this in a great book I read that is called Cholesteatoma and edited by Danner. It is a compilation of articles all relating to the various areas of Cholesteatoma research, history, and surgery techniques. It is pricey, but was invaluable to me when we were having a tough time with this. I would send you mine, but I already gave it out.  We talked about some of the more invasive surgeries this afternoon with Chloe's Dr. Just to get an idea of where we go from here if this doesn't solve her problems.

On Fri, Jun 10, 2011 at 10:35 PM, Donna <Donna_is@...> wrote:

Since the ENT told me last week that JinMei probably needs a Radical Mastoidectomy, I've gotten myself pretty freaked out.  He said he had never seen this in such a young child (8) & I'm not finding anything on the internet either. When he did her CWD last week, he found it open into her eustacian tube. So he is conferring with other Drs & thinking on it. Meanwhile I'm wondering what will happen to her remaining hearing after surgery. This WAS her better ear. Plus what danger is she in now until the surgery is done? And how long will the Dr. need to wait on her current recovery since the CWD was just done Thursday last week.

Anyone know ANYTHING about Radical Mastoidectomy on a child? NOT MODIFIED Radical Mastoidectomy. Anyone know a web site that discusses children going thru this? I'm not very patient waiting on hearing from the Dr.

Donna DeBoer

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[Guest guest]

http://www.utmb.edu/otoref/grnds/pedi-mastoid-100528/pedi-mastoid-slides-100528.pdf

From: Donna <Donna_is@...>cholesteatoma Sent: Fri, June 10, 2011 10:35:58 PMSubject: Radical Mastoidectomy for kids

Since the ENT told me last week that JinMei probably needs a Radical Mastoidectomy, I've gotten myself pretty freaked out. He said he had never seen this in such a young child (8) & I'm not finding anything on the internet either. When he did her CWD last week, he found it open into her eustacian tube. So he is conferring with other Drs & thinking on it. Meanwhile I'm wondering what will happen to her remaining hearing after surgery. This WAS her better ear. Plus what danger is she in now until the surgery is done? And how long will the Dr. need to wait on her current recovery since the CWD was just done Thursday last week.Anyone know ANYTHING about Radical Mastoidectomy on a child? NOT MODIFIED Radical Mastoidectomy. Anyone know a web site that discusses children going thru this? I'm not very patient waiting on hearing from the Dr.Donna DeBoer

[Guest guest]

I think someone had posted a few years ago about her daughter having this--left with no eardrum or ossicles? she was doing very well, maybe it's worth looking back through the old posts. Chloe had cholesteatoma growing into the eustachian tube this time, but the Fellow said he felt they had gotten it all. Her main surgeon won't guess if she is done since she has had so many bizarre recurrences. He did say he was not impressed with the information given by the MRI--supposed to be the up and coming thing in cholesteatoma.

 

Did Jin Mei's surgeon have to leave some cholesteatoma in there--is that why he is already talking more surgery? As far as how close together you can have surgery, we once had surgeries in April, late May, early June, and early July due to bone in fection and rapid regrowth. She did not have any long term effects from so many so close. Two of the surgeries were only a week apart.

 

How does she do with the cleanings? Since they are the same age, I am wondering if you are able to do them in the office or if she needs the anesthesia? That is why we avoided the CWD initially, because she was too young to do them in the office. Then the last few recurrences really weren't in an area that he felt would benefit from the CWD.

 

How far out from surgery are you? What does it look like after unpacking?

 

Thanks!

On Sat, Jun 11, 2011 at 7:24 AM, Wann <nwann_2000@...> wrote:

http://www.utmb.edu/otoref/grnds/pedi-mastoid-100528/pedi-mastoid-slides-100528.pdf

From: Donna <Donna_is@...>cholesteatoma

Sent: Fri, June 10, 2011 10:35:58 PMSubject: Radical Mastoidectomy for kids

 

Since the ENT told me last week that JinMei probably needs a Radical Mastoidectomy, I've gotten myself pretty freaked out. He said he had never seen this in such a young child (8) & I'm not finding anything on the internet either. When he did her CWD last week, he found it open into her eustacian tube. So he is conferring with other Drs & thinking on it. Meanwhile I'm wondering what will happen to her remaining hearing after surgery. This WAS her better ear. Plus what danger is she in now until the surgery is done? And how long will the Dr. need to wait on her current recovery since the CWD was just done Thursday last week.

Anyone know ANYTHING about Radical Mastoidectomy on a child? NOT MODIFIED Radical Mastoidectomy. Anyone know a web site that discusses children going thru this? I'm not very patient waiting on hearing from the Dr.

Donna DeBoer

[Guest guest]

The reason we are talking more surgery is the C-toma has eroded the Eustachian

tube. Normally we rotate back & forth between the two ears with surgery so there

is a pretty good period of time between them for the same ear. This last surgery

was done June 2nd.

She normally does great with cleanings. She is a VERY medically compliant child.

To me looking in either ear looks gross to me. The packing was taken out

Wednesday by her Alaskan ENT(not her surgeon). We will see him again in about 10

days. So far so good.

Donna DeBoer

>

> >

[Guest guest]

I am thinking that Chloe will be fine to do the office cleanings. She is also usually ok with medical things. That only thing she fights me on is the taste of tylenol with codeine. She doesn't like the sensation of going to sleep with the mask, so the last two surgeries she has just asked the anesthesiologist to do an IV ahead of time. She climbs right up on the table and talks with the nurses while they are prepping her. This morning there is a blister on the back of her ear that I have not seen before. It doesn't look infected, and she has no fever. It is not near the stitchesbut actually on the back of the ear. Have you had anything like that?

On Mon, Jun 13, 2011 at 3:00 AM, Donna <Donna_is@...> wrote:

The reason we are talking more surgery is the C-toma has eroded the Eustachian tube. Normally we rotate back & forth between the two ears with surgery so there is a pretty good period of time between them for the same ear. This last surgery was done June 2nd.

She normally does great with cleanings. She is a VERY medically compliant child. To me looking in either ear looks gross to me. The packing was taken out Wednesday by her Alaskan ENT(not her surgeon). We will see him again in about 10 days. So far so good.

Donna DeBoer

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

[Guest guest]

We don't even bother using tylenol with codeine as JinMei doesn't like it either

& it makes her sick. Usually we just use Tylenol. She doesn't even want that as

she doesn't seem to be in pain but this time they pointed out that she may not

sense it as pain & that could be why she is nauseated.

Yes we HAVE had irritation/bumps/swelling/redness behind the ear but it is more

on her skull, just along & below the hairline. It has been making her itch for

several days.

It does sound like our girls go through a lot of the same stuff. Where do you

live?

Donna DeBoer

>

> > The reason we are talking more surgery is the C-toma has eroded the

> > Eustachian tube. Normally we rotate back & forth between the two ears with

> > surgery so there is a pretty good period of time between them for the same

> > ear. This last surgery was done June 2nd.

> >

> > She normally does great with cleanings. She is a VERY medically compliant

> > child. To me looking in either ear looks gross to me. The packing was taken

> > out Wednesday by her Alaskan ENT(not her surgeon). We will see him again in

> > about 10 days. So far so good.

> > Donna DeBoer

>

[Guest guest]

>> Yes we HAVE had irritation/bumps/swelling/redness behind the ear but it is more on her skull, just along & below the hairline. It has been making her itch for several days. >>

Not to down play what you said above, but I am happy to hear this...I have bee having the same issues. It also seems like my eye sight got a little worse. The eye sight issue could all be in my head and it really has not got any worse. I mean god forbid it has anything with being 48 years old.

From: Donna <Donna_is@...>Subject: Re: Radical Mastoidectomy for kidscholesteatoma Date: Monday, June 13, 2011, 3:36 PM

We don't even bother using tylenol with codeine as JinMei doesn't like it either & it makes her sick. Usually we just use Tylenol. She doesn't even want that as she doesn't seem to be in pain but this time they pointed out that she may not sense it as pain & that could be why she is nauseated.Yes we HAVE had irritation/bumps/swelling/redness behind the ear but it is more on her skull, just along & below the hairline. It has been making her itch for several days.It does sound like our girls go through a lot of the same stuff. Where do you live?Donna DeBoer> > > The reason we are talking more surgery is the C-toma has eroded the> > Eustachian tube. Normally we rotate back & forth between the two ears with> > surgery so there is a pretty good period of time between them for the

same> > ear. This last surgery was done June 2nd.> >> > She normally does great with cleanings. She is a VERY medically compliant> > child. To me looking in either ear looks gross to me. The packing was taken> > out Wednesday by her Alaskan ENT(not her surgeon). We will see him again in> > about 10 days. So far so good.> > Donna DeBoer>------------------------------------

[Guest guest]

Hi Brad >> It also seems like my eye sight got a little worse. The eye sight issue could all be in my head and it really has not got any worse. I mean god forbid it has anything with being 48 years old. << I’m no medico, but I remember when I had my cholesteatoma surgery done some 12 years or so ago (I was 37 back in them thar days ;-) ), I had vertigo afterwards and found it hard to focus solidly for any period of time – reading was a definite no-no whilst watching tv was a strain for any length of time. Your eye problems could be to do with the possibility that you are suffering from slight vertigo, meaning that your eyes can’t focus so very well at the moment. Mind how you walk, hold on to walls, furniture or even a walking stick if necessary – anything to help you move a little more easily; whatever you do, take extra care. Kind regards, Kazzy From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of Bradford BurtSent: 13 June 2011 17:04cholesteatoma Subject: Re: Re: Radical Mastoidectomy for kids >> Yes we HAVE had irritation/bumps/swelling/redness behind the ear but it is more on her skull, just along & below the hairline. It has been making her itch for several days. >> Not to down play what you said above, but I am happy to hear this...I have bee having the same issues. It also seems like my eye sight got a little worse. The eye sight issue could all be in my head and it really has not got any worse. I mean god forbid it has anything with being 48 years old. From: Donna <Donna_is@...>Subject: Re: Radical Mastoidectomy for kidscholesteatoma Date: Monday, June 13, 2011, 3:36 PMWe don't even bother using tylenol with codeine as JinMei doesn't like it either & it makes her sick. Usually we just use Tylenol. She doesn't even want that as she doesn't seem to be in pain but this time they pointed out that she may not sense it as pain & that could be why she is nauseated.Yes we HAVE had irritation/bumps/swelling/redness behind the ear but it is more on her skull, just along & below the hairline. It has been making her itch for several days.It does sound like our girls go through a lot of the same stuff. Where do you live?Donna DeBoer> > > The reason we are talking more surgery is the C-toma has eroded the> > Eustachian tube. Normally we rotate back & forth between the two ears with> > surgery so there is a pretty good period of time between them for the same> > ear. This last surgery was done June 2nd.> >> > She normally does great with cleanings. She is a VERY medically compliant> > child. To me looking in either ear looks gross to me. The packing was taken> > out Wednesday by her Alaskan ENT(not her surgeon). We will see him again in> > about 10 days. So far so good.> > Donna DeBoer>------------------------------------

[Guest guest]

New England. Long way from where you are. Too bad! We have her surgeries at Mass Eye and Ear in Boston.

On Mon, Jun 13, 2011 at 11:36 AM, Donna <Donna_is@...> wrote:

We don't even bother using tylenol with codeine as JinMei doesn't like it either & it makes her sick. Usually we just use Tylenol. She doesn't even want that as she doesn't seem to be in pain but this time they pointed out that she may not sense it as pain & that could be why she is nauseated.

Yes we HAVE had irritation/bumps/swelling/redness behind the ear but it is more on her skull, just along & below the hairline. It has been making her itch for several days.It does sound like our girls go through a lot of the same stuff. Where do you live?

Donna DeBoer>> > The reason we are talking more surgery is the C-toma has eroded the> > Eustachian tube. Normally we rotate back & forth between the two ears with

> > surgery so there is a pretty good period of time between them for the same> > ear. This last surgery was done June 2nd.> >> > She normally does great with cleanings. She is a VERY medically compliant

> > child. To me looking in either ear looks gross to me. The packing was taken> > out Wednesday by her Alaskan ENT(not her surgeon). We will see him again in> > about 10 days. So far so good.

> > Donna DeBoer>

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[Guest guest]

LOL It is SO difficult figuring out what causes what in all of this, isn't it?

We live very remotely in Alaska & I often wish I could just drop by a Dr's

office & just ask: " Is this OK? " Usually assume it is all fine but what if????

Donna DeBoer

> >

> > > The reason we are talking more surgery is the C-toma has eroded the

> > > Eustachian tube. Normally we rotate back & forth between the two ears with

> > > surgery so there is a pretty good period of time between them for the same

> > > ear. This last surgery was done June 2nd.

> > >

> > > She normally does great with cleanings. She is a VERY medically compliant

> > > child. To me looking in either ear looks gross to me. The packing was

taken

> > > out Wednesday by her Alaskan ENT(not her surgeon). We will see him again

in

> > > about 10 days. So far so good.

> > > Donna DeBoer

> >

>

>

>

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

>

>

[Guest guest]

We have our doc's email and can send him pictures if something looks wrong. It helps with peace of mind:)

On Mon, Jun 13, 2011 at 5:01 PM, Donna <Donna_is@...> wrote:

LOL It is SO difficult figuring out what causes what in all of this, isn't it?  We live very remotely in Alaska & I often wish I could just drop by a Dr's office & just ask: " Is this OK? " Usually assume it is all fine but what if????

Donna DeBoer

> >> > > The reason we are talking more surgery is the C-toma has eroded the> > > Eustachian tube. Normally we rotate back & forth between the two ears with> > > surgery so there is a pretty good period of time between them for the same

> > > ear. This last surgery was done June 2nd.> > >> > > She normally does great with cleanings. She is a VERY medically compliant> > > child. To me looking in either ear looks gross to me. The packing was taken

> > > out Wednesday by her Alaskan ENT(not her surgeon). We will see him again in> > > about 10 days. So far so good.> > > Donna DeBoer> >>>>> ------------------------------------

>>

[Guest guest]

I've tried that before but I either am not a good photographer, or don't have

the right kind of camera. I guess I could ask someone else to take pics when I

need them.

Donna DeBoer

> > > >

> > > > > The reason we are talking more surgery is the C-toma has eroded the

> > > > > Eustachian tube. Normally we rotate back & forth between the two ears

> > with

> > > > > surgery so there is a pretty good period of time between them for the

> > same

> > > > > ear. This last surgery was done June 2nd.

> > > > >

> > > > > She normally does great with cleanings. She is a VERY medically

> > compliant

> > > > > child. To me looking in either ear looks gross to me. The packing was

> > taken

> > > > > out Wednesday by her Alaskan ENT(not her surgeon). We will see him

> > again in

> > > > > about 10 days. So far so good.

> > > > > Donna DeBoer

> > > >

> > >

> > >

> > >

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

> > >

> > >

[Guest guest]

Sometimes it is really hard to get what you are seeing on a digital screen.

On Mon, Jun 13, 2011 at 8:52 PM, Donna <Donna_is@...> wrote:

I've tried that before but I either am not a good photographer, or don't have the right kind of camera.  I guess I could ask someone else to take pics when I need them.

Donna DeBoer> > > >> > > > > The reason we are talking more surgery is the C-toma has eroded the

> > > > > Eustachian tube. Normally we rotate back & forth between the two ears> > with> > > > > surgery so there is a pretty good period of time between them for the> > same

> > > > > ear. This last surgery was done June 2nd.> > > > >> > > > > She normally does great with cleanings. She is a VERY medically> > compliant> > > > > child. To me looking in either ear looks gross to me. The packing was

> > taken> > > > > out Wednesday by her Alaskan ENT(not her surgeon). We will see him> > again in> > > > > about 10 days. So far so good.> > > > > Donna DeBoer

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