Re: post surgery problems prevention?

[Guest guest]

I can't image having 10 surgeries, that is a brave young lady u have with u. I

had always had problems with my ears growing up as a kid, but it wasn't until I

toke a job that sent me on a plane to Hawaii and they flew me every other day

that I realized something was seriously wrong with my ears. I will admit that I

am scared of anything dealing with altitudes like flying. I always tended to get

sick headache or ear infections, if I really don't monitor what I do afterwords.

I really think there is a missing link there.

Sent from my iPod

[Guest guest]

JinMei has never complained about her ears hurting when flying. There are no

roads to where we live so it is either fly or take a boat. And taking a ferry

from Washington is a long process.

Donna DeBoer

>

> I can't image having 10 surgeries, that is a brave young lady u have with u. I

had always had problems with my ears growing up as a kid, but it wasn't until I

toke a job that sent me on a plane to Hawaii and they flew me every other day

that I realized something was seriously wrong with my ears. I will admit that I

am scared of anything dealing with altitudes like flying. I always tended to get

sick headache or ear infections, if I really don't monitor what I do afterwords.

I really think there is a missing link there.

>

> Sent from my iPod

>

[Guest guest]

My ears didn't hurt when flying, I think it's the fact that your ears and

balance are readjusting after u change altitudes like when driving through

mountains. Like a normal persons ears are supposed to pop when u go up that

high, mine don't. It irritates my ears and I get headaches at first sometimes

bleeding.

Sent from my iPod

[Guest guest]

If one has perforations in both ears, then flying is fine. Intact eardrums

experience all-over air pressure (as opposed to sound waves) because of

differences in cabin pressure and middle ear air pressure. And when the

eustachian tube doesn't open to equalise the pressure, that's when the pain is

felt. It's the failure of the eustachian tubes that's caused all my problems

with repeated bust eardrums when flying, and being the root cause of my more

serious problems now. In that sense, perforations while flying actullay help!

>

> Next week my 8 year old daughter JinMei is having her 10th ear surgery. All in

less than 4 year's time. She has Cholesteatomas in both ears that keep growing

back. Plus her grafted in ear drums fail. Plus she has lost the titanium that

was grafted in. We aren't going to try that again until she can have some

significant healthy ears time. But how do we KEEP her ears healthy? I keep them

as dry as possible. She doesn't swim. We are careful during showers. We DO fly

home to Alaska within a few days of surgery each time. The Dr. said flying is

fine. Is that true? Is there ANYTHING I could be doing wrong? I feel she has a

really good Dr. at Seattle Children's Hospital. Her hearing is significantly

impaired by this. JinMei also had a cleft palate & has had about 10 more

surgeries for that & associated problems. I just feel like I'm missing some key

info somewhere. Or maybe that's just wishful thinking. HELP!!! Ideas? Thoughts?

Suggestions?

>

> Donna DeBoer

>

[Guest guest]

Hi Danna,

My two ear drums are perforated and from experience i know that even a few drop of water if enter my ear(s) will couse infection. I am pending my first surgery to remove c.toma, soon,and searching for the best doctor for this proccedure

ruth

From: contactb.today <bernbrooks@...>cholesteatoma Sent: Sat, May 28, 2011 4:14:29 AMSubject: Re: post surgery problems prevention?

If one has perforations in both ears, then flying is fine. Intact eardrums experience all-over air pressure (as opposed to sound waves) because of differences in cabin pressure and middle ear air pressure. And when the eustachian tube doesn't open to equalise the pressure, that's when the pain is felt. It's the failure of the eustachian tubes that's caused all my problems with repeated bust eardrums when flying, and being the root cause of my more serious problems now. In that sense, perforations while flying actullay help!>> Next week my 8 year old daughter JinMei is having her 10th ear surgery. All in less than 4 year's time. She has Cholesteatomas in both ears that keep growing back. Plus her grafted in ear drums fail.

Plus she has lost the titanium that was grafted in. We aren't going to try that again until she can have some significant healthy ears time. But how do we KEEP her ears healthy? I keep them as dry as possible. She doesn't swim. We are careful during showers. We DO fly home to Alaska within a few days of surgery each time. The Dr. said flying is fine. Is that true? Is there ANYTHING I could be doing wrong? I feel she has a really good Dr. at Seattle Children's Hospital. Her hearing is significantly impaired by this. JinMei also had a cleft palate & has had about 10 more surgeries for that & associated problems. I just feel like I'm missing some key info somewhere. Or maybe that's just wishful thinking. HELP!!! Ideas? Thoughts? Suggestions?> > Donna DeBoer>

[Guest guest]

That was the only thing I would add...water can be a big enemy! Also any upper respiratory infections seem to settle in chloe's ear--only the left. Our other big problem is yeast infections after bacterial infections. I think due, in part, to the strong antibiotic drops. We sort of go back and forth between the two. Last infection was MRSA and yeast!

 

She has another surgery next week, and I am curious if this might be the first with no regrowth.

 

Don't overthink it, though. We did everything right, everytime, but she just continues to have new growth. I have actually been letting her swim this week with earplugs:)...so she can have a little summer before the " no swimming for six months " rule sets in again! This is now her longest span--thirteen months since the last surgery.

On Sun, May 29, 2011 at 2:03 PM, Ruth Silver <amitai7129@...> wrote:

Hi Danna,

 

My two ear drums are perforated and from experience i know that even a few drop of water  if enter my ear(s)  will couse infection. I am pending my first surgery to remove c.toma, soon,and searching for the best doctor for this proccedure

ruth

From: contactb.today <bernbrooks@...>cholesteatoma

Sent: Sat, May 28, 2011 4:14:29 AMSubject: Re: post surgery problems prevention?

 

If one has perforations in both ears, then flying is fine. Intact eardrums experience all-over air pressure (as opposed to sound waves) because of differences in cabin pressure and middle ear air pressure. And when the eustachian tube doesn't open to equalise the pressure, that's when the pain is felt. It's the failure of the eustachian tubes that's caused all my problems with repeated bust eardrums when flying, and being the root cause of my more serious problems now. In that sense, perforations while flying actullay help!

>> Next week my 8 year old daughter JinMei is having her 10th ear surgery. All in less than 4 year's time. She has Cholesteatomas in both ears that keep growing back. Plus her grafted in ear drums fail. Plus she has lost the titanium that was grafted in. We aren't going to try that again until she can have some significant healthy ears time. But how do we KEEP her ears healthy? I keep them as dry as possible. She doesn't swim. We are careful during showers. We DO fly home to Alaska within a few days of surgery each time. The Dr. said flying is fine. Is that true? Is there ANYTHING I could be doing wrong? I feel she has a really good Dr. at Seattle Children's Hospital. Her hearing is significantly impaired by this. JinMei also had a cleft palate & has had about 10 more surgeries for that & associated problems. I just feel like I'm missing some key info somewhere. Or maybe that's just wishful thinking. HELP!!! Ideas? Thoughts? Suggestions?

> > Donna DeBoer>

[Guest guest]

On 5/31/2011 10:06 AM, Jenni wrote:

> K, you should be able to go into your settings and change your

> preferences there. Jenni

Or just click the link at the bottom of every group message that says

" unsubscribe " ...

[Guest guest]

On 5/31/2011 10:06 AM, Jenni wrote:

> K, you should be able to go into your settings and change your

> preferences there. Jenni

Or just click the link at the bottom of every group message that says

" unsubscribe " ...

[Guest guest]

I try to prevent water in her ears. JinMei tests positive for MRSA, too. Has for

years but never really had an infection with it.

Donna DeBoer

> > >

> > > Next week my 8 year old daughter JinMei is having her 10th ear surgery.

> > All in less than 4 year's time. She has Cholesteatomas in both ears that

> > keep growing back. Plus her grafted in ear drums fail. Plus she has lost the

> > titanium that was grafted in. We aren't going to try that again until she

> > can have some significant healthy ears time. But how do we KEEP her ears

> > healthy? I keep them as dry as possible. She doesn't swim. We are careful

> > during showers. We DO fly home to Alaska within a few days of surgery each

> > time. The Dr. said flying is fine. Is that true? Is there ANYTHING I could

> > be doing wrong? I feel she has a really good Dr. at Seattle Children's

> > Hospital. Her hearing is significantly impaired by this. JinMei also had a

> > cleft palate & has had about 10 more surgeries for that & associated

> > problems. I just feel like I'm missing some key info somewhere. Or maybe

> > that's just wishful thinking. HELP!!! Ideas? Thoughts? Suggestions?

> > >

> > > Donna DeBoer

> > >

> >

> >

> >

> >

>