Re: Eustachian Tube Dysfunction Driving Me Crazy!

[Guest guest]

My c-toma was a result of chonic eustatian tube disfunction. My doc. told me I

should pop my ears 50 times a day if I can. I've been popping them as often as

I can (maybe a dozen times a day) for 6 months now. It certainly helps and

should prevent future retraction of the eardrum. According to my doc, they

can't fix the eustatian tubes that don't work, but you can live with it with a

tube or frequent popping to keep a positive pressure in the ear. You should

talk to you doctor, but at first I was afraid to blow hard when popping the

ears. He told me I couldn't do any damage by blowing too hard.

Eustachian Tube Dysfunction Driving Me Crazy!

I've had a successful canal wall down. The cholesteatoma is gone,

but I still feel fullness thanks to a Eustachian tube that just

won't open. I have good days and bad days, but mostly bad. Bad to

the point where I don't want to live anymore. It's gotten so bad

I'm drafting suicide notes thinking it will all be for the better.

My husband listens patiently, but he can't do anything. My oto, who

did the canal wall down, started me on allergy shots 3 months ago

and they've been absolutely no help at all. Meanwhile, he claims he

put a ventilation tube in there when he did the canal wall down but

that he can't see it now. If putting in a new one would end this, I

don't understant why he hasn't offered to.....and what the heck does

he mean by " I can't see it. " anyway.

I've visited this one doctor in my town who claims that people can

be allergic to their own hormones and thinks that my swelling, which

gets worse during ovulation and my period, might be a result of

this. He's not on my insurance plan and this treatment, if it even

holds water, will cost a couple thousand dollars.

I just want this all to end. My ear doctor can't help, I've had 3

surgeries already, and the fullness is driving me mad.

Does anyone have any words of advice or words from the other side of

having what seems to be a swelled shut eustachian tube fixed? I do

get a few seconds of relief when I pinch my nose and blow hard. The

popping helps, but it swells shut again. Are there any solutions?

Sorry to be a downer, I'm just at the end of my rope with this.

[Guest guest]

Jeff,

My doctors told me to keep popping my ears as well and assured me

that doing that will only help. In fact, the allergist (who I'm

skeptical about, but am seeing anyway) said that popping the ears

might actually kind of " teach " the eustachian tube to stay open.

Did you find that the ventilation tube helped you? My doctor says

he put one in there but " can't see it " . I'm wondering if it fell

out.

>

> My c-toma was a result of chonic eustatian tube disfunction. My

doc. told me I should pop my ears 50 times a day if I can. I've

been popping them as often as I can (maybe a dozen times a day) for

6 months now. It certainly helps and should prevent future

retraction of the eardrum. According to my doc, they can't fix the

eustatian tubes that don't work, but you can live with it with a

tube or frequent popping to keep a positive pressure in the ear.

You should talk to you doctor, but at first I was afraid to blow

hard when popping the ears. He told me I couldn't do any damage by

blowing too hard.

>

> Eustachian Tube Dysfunction Driving Me

Crazy!

>

>

>

> I've had a successful canal wall down. The cholesteatoma is

gone,

> but I still feel fullness thanks to a Eustachian tube that

just

> won't open. I have good days and bad days, but mostly bad.

Bad to

> the point where I don't want to live anymore. It's gotten

so bad

> I'm drafting suicide notes thinking it will all be for the

better.

>

> My husband listens patiently, but he can't do anything. My

oto, who

> did the canal wall down, started me on allergy shots 3

months ago

> and they've been absolutely no help at all. Meanwhile, he

claims he

> put a ventilation tube in there when he did the canal wall

down but

> that he can't see it now. If putting in a new one would end

this, I

> don't understant why he hasn't offered to.....and what the

heck does

> he mean by " I can't see it. " anyway.

>

> I've visited this one doctor in my town who claims that

people can

> be allergic to their own hormones and thinks that my

swelling, which

> gets worse during ovulation and my period, might be a result

of

> this. He's not on my insurance plan and this treatment, if

it even

> holds water, will cost a couple thousand dollars.

>

> I just want this all to end. My ear doctor can't help, I've

had 3

> surgeries already, and the fullness is driving me mad.

>

> Does anyone have any words of advice or words from the other

side of

> having what seems to be a swelled shut eustachian tube

fixed? I do

> get a few seconds of relief when I pinch my nose and blow

hard. The

> popping helps, but it swells shut again. Are there any

solutions?

>

> Sorry to be a downer, I'm just at the end of my rope with

this.

>

>

>

>

>

>

[Guest guest]

Kazzy, that must be horrible. I read about some sort of fiberoptic

tube they were using to insert into Eustachian tubes. I wonder if

something like that would work.

> >

> > My c-toma was a result of chonic eustatian tube

disfunction. My

> doc. told me I should pop my ears 50 times a day if I can.

I've

> been popping them as often as I can (maybe a dozen times a

day) for

> 6 months now. It certainly helps and should prevent future

> retraction of the eardrum. According to my doc, they can't

fix the

> eustatian tubes that don't work, but you can live with it with

a

> tube or frequent popping to keep a positive pressure in the

ear.

> You should talk to you doctor, but at first I was afraid to

blow

> hard when popping the ears. He told me I couldn't do any

damage by

> blowing too hard.

> >

> > Eustachian Tube Dysfunction Driving

Me

> Crazy!

> >

> >

> >

> > I've had a successful canal wall down. The

cholesteatoma is

> gone,

> > but I still feel fullness thanks to a Eustachian tube

that

> just

> > won't open. I have good days and bad days, but mostly

bad.

> Bad to

> > the point where I don't want to live anymore. It's

gotten

> so bad

> > I'm drafting suicide notes thinking it will all be for

the

> better.

> >

> > My husband listens patiently, but he can't do

anything. My

> oto, who

> > did the canal wall down, started me on allergy shots 3

> months ago

> > and they've been absolutely no help at all.

Meanwhile, he

> claims he

> > put a ventilation tube in there when he did the canal

wall

> down but

> > that he can't see it now. If putting in a new one

would end

> this, I

> > don't understant why he hasn't offered to.....and what

the

> heck does

> > he mean by " I can't see it. " anyway.

> >

> > I've visited this one doctor in my town who claims

that

> people can

> > be allergic to their own hormones and thinks that my

> swelling, which

> > gets worse during ovulation and my period, might be a

result

> of

> > this. He's not on my insurance plan and this

treatment, if

> it even

> > holds water, will cost a couple thousand dollars.

> >

> > I just want this all to end. My ear doctor can't

help, I've

> had 3

> > surgeries already, and the fullness is driving me mad.

> >

> > Does anyone have any words of advice or words from the

other

> side of

> > having what seems to be a swelled shut eustachian tube

> fixed? I do

> > get a few seconds of relief when I pinch my nose and

blow

> hard. The

> > popping helps, but it swells shut again. Are there

any

> solutions?

> >

> > Sorry to be a downer, I'm just at the end of my rope

with

> this.

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi

I've not had/have c-toma (I'm on this board ebcause my son may have

one) but your post struck a cord with me.

I was born with a cleft palate (like my son) and have had trouble

with fluuid in my ears all my life.

What hit the cord with me is that I have dreadful fluid build up and

opressure every month when I have my period too. I find my 'good'

ear (the one I can hear the best out of) totally blocks for a couple

of days at this time of the month. I need to wear my hearing aid in

my 'bad' ear.

The day after my daughter was born I went totally deaf in both ears

because of fluid levels in my body as a result of the hormone

changes in my body.

Have you tried taking a diruetic...I don't know if your in the UK or

the US but over here in the UK we have ones called Aqua-ban and

there are lots of other brands available that you can buy in the

chemist over the counter. I have tried these and they do help, don't

solve the problm altogether, but do help.

Also try watching your salt intake. I find if I eat too many crisps,

etc then it can be worse.

I recently had a t-tube removed from my ear and spent the past week

feeling absolutely awful with pressure in my ears. I ended up going

to the doctors and got some antibiotics and have felt much better.

It might also be worth a try?

If the doctor has put in a ventilation tube but now can't see it,

could it be that it has fallen out? They can usually see them if

they try hard enough to (unless things are more complicated with

having had a c-toma (please excuse my ignorance if this is the case).

I hope this is of some help.

Fay

>

> I've had a successful canal wall down. The cholesteatoma is gone,

> but I still feel fullness thanks to a Eustachian tube that just

> won't open. I have good days and bad days, but mostly bad. Bad

to

> the point where I don't want to live anymore. It's gotten so bad

> I'm drafting suicide notes thinking it will all be for the better.

>

> My husband listens patiently, but he can't do anything. My oto,

who

> did the canal wall down, started me on allergy shots 3 months ago

> and they've been absolutely no help at all. Meanwhile, he claims

he

> put a ventilation tube in there when he did the canal wall down

but

> that he can't see it now. If putting in a new one would end this,

I

> don't understant why he hasn't offered to.....and what the heck

does

> he mean by " I can't see it. " anyway.

>

> I've visited this one doctor in my town who claims that people can

> be allergic to their own hormones and thinks that my swelling,

which

> gets worse during ovulation and my period, might be a result of

> this. He's not on my insurance plan and this treatment, if it

even

> holds water, will cost a couple thousand dollars.

>

> I just want this all to end. My ear doctor can't help, I've had 3

> surgeries already, and the fullness is driving me mad.

>

> Does anyone have any words of advice or words from the other side

of

> having what seems to be a swelled shut eustachian tube fixed? I

do

> get a few seconds of relief when I pinch my nose and blow hard.

The

> popping helps, but it swells shut again. Are there any

solutions?

>

> Sorry to be a downer, I'm just at the end of my rope with this.

>

[Guest guest]

Fay,

My ear is much, much worse during my period and when I ovulate. My

oto is finally starting to believe me and I've found an allergist

who thinks he may be able to help, as he specializes in allergies

and how hormones are related -- field of study which there does not

seem to be a lot of sound knowledge.

So far, I've taken Medrol to drain the fluid. It did nothing. I've

also been taking an antihistamine called AlleRX (pseudoephidrein)

which seems to help a little.

I have not taken Aqua Ban or a general diuretic. That's one more

avenue to pursue.

I've read a bit about eustachian tube function going hand in hand

with cleft palate. I wonder if there's any correlation between my

eustachian tube malfunction and the dental work I had (tooth

amputation and bridge on upper molar) right before this all started

two years ago.

> >

> > I've had a successful canal wall down. The cholesteatoma is

gone,

> > but I still feel fullness thanks to a Eustachian tube that just

> > won't open. I have good days and bad days, but mostly bad. Bad

> to

> > the point where I don't want to live anymore. It's gotten so

bad

> > I'm drafting suicide notes thinking it will all be for the

better.

> >

> > My husband listens patiently, but he can't do anything. My oto,

> who

> > did the canal wall down, started me on allergy shots 3 months

ago

> > and they've been absolutely no help at all. Meanwhile, he

claims

> he

> > put a ventilation tube in there when he did the canal wall down

> but

> > that he can't see it now. If putting in a new one would end

this,

> I

> > don't understant why he hasn't offered to.....and what the heck

> does

> > he mean by " I can't see it. " anyway.

> >

> > I've visited this one doctor in my town who claims that people

can

> > be allergic to their own hormones and thinks that my swelling,

> which

> > gets worse during ovulation and my period, might be a result of

> > this. He's not on my insurance plan and this treatment, if it

> even

> > holds water, will cost a couple thousand dollars.

> >

> > I just want this all to end. My ear doctor can't help, I've had

3

> > surgeries already, and the fullness is driving me mad.

> >

> > Does anyone have any words of advice or words from the other

side

> of

> > having what seems to be a swelled shut eustachian tube fixed? I

> do

> > get a few seconds of relief when I pinch my nose and blow hard.

> The

> > popping helps, but it swells shut again. Are there any

> solutions?

> >

> > Sorry to be a downer, I'm just at the end of my rope with this.

> >

>

[Guest guest]

Sorry I'm just now answering this. I've been away.

I believe the correct way, or at least the way I do it, is to hold

your nose and blow out. It may feel as if you are doing something

wrong, but the doctor said it was actually a good thing to keep

doing.

Personally, now I'm wondering if it's not so much a Eustachian tube

issue I'm having or just a hard time dealing with the anatomy of my

ear. Perhaps the fullness I'm perceiving is just tightness or

pressure in the middle ear maybe having to do with my not having

undergone reconstruction yet.

Did anyone notice ear fullness subsiding after reconstruction?

> >

> > My c-toma was a result of chonic eustatian tube disfunction. My

> doc. told me I should pop my ears 50 times a day if I can. I've

> been popping them as often as I can (maybe a dozen times a day)

for

> 6 months now. It certainly helps and should prevent future

> retraction of the eardrum. According to my doc, they can't fix

the

> eustatian tubes that don't work, but you can live with it with a

> tube or frequent popping to keep a positive pressure in the ear.

> You should talk to you doctor, but at first I was afraid to blow

> hard when popping the ears. He told me I couldn't do any damage

by

> blowing too hard.

> >

> > Eustachian Tube Dysfunction Driving Me

> Crazy!

> >

> >

> >

> > I've had a successful canal wall down. The cholesteatoma

is

> gone,

> > but I still feel fullness thanks to a Eustachian tube that

> just

> > won't open. I have good days and bad days, but mostly

bad.

> Bad to

> > the point where I don't want to live anymore. It's gotten

> so bad

> > I'm drafting suicide notes thinking it will all be for the

> better.

> >

> > My husband listens patiently, but he can't do anything.

My

> oto, who

> > did the canal wall down, started me on allergy shots 3

> months ago

> > and they've been absolutely no help at all. Meanwhile, he

> claims he

> > put a ventilation tube in there when he did the canal wall

> down but

> > that he can't see it now. If putting in a new one would

end

> this, I

> > don't understant why he hasn't offered to.....and what the

> heck does

> > he mean by " I can't see it. " anyway.

> >

> > I've visited this one doctor in my town who claims that

> people can

> > be allergic to their own hormones and thinks that my

> swelling, which

> > gets worse during ovulation and my period, might be a

result

> of

> > this. He's not on my insurance plan and this treatment,

if

> it even

> > holds water, will cost a couple thousand dollars.

> >

> > I just want this all to end. My ear doctor can't help,

I've

> had 3

> > surgeries already, and the fullness is driving me mad.

> >

> > Does anyone have any words of advice or words from the

other

> side of

> > having what seems to be a swelled shut eustachian tube

> fixed? I do

> > get a few seconds of relief when I pinch my nose and blow

> hard. The

> > popping helps, but it swells shut again. Are there any

> solutions?

> >

> > Sorry to be a downer, I'm just at the end of my rope with

> this.

> >

> >

> >

> >

> >

> >