Re: Confusing Prognosis.......Help!!!

[Guest guest]

HI Kim,

Sorry to hear that you are going through so much! It might be a good idea if you get a second opinion from another Otologist.

I just got through having surgery 2 1/2 weeks ago and part of the problems I was having was the same as yours. Both of my Eustachian tubes do not work. I have a tube in my right ear. My left ear drum was retracted all the way back to the bone and my eardrum was thick from scar tissue and infected. There was no room to put a tube in there.

When I had my surgery the Dr widened the ear canal, removed the scar tissue infected, thickened eardrum, rebuilt a new eardrum from tissue on the outside of my ear and put in a Torp. The Dr also found that a piece of cartilage that was put in by the previous Dr was laying on top of my facial nerve. I understand what you mean about feeling rotten and in pain.

Since then, I have been back to the Dr and have had the packing removed and suctioning. I have antibiotics to take for 2 weeks and I will see him again in 3 weeks. If the eardrum looks solid, he will then insert a tube in that ear. I still have a little bit of dizziness from the surgery, but for the first time this I can almost say I feel great!!

I by no means have been through all you have, but I had to switch Doctors to get the result I have now. I had 2 prior surgeries this year on my left ear that shouldn't haven't been handled the way they were.

There are alot of other people on this site that have more experience and knowledge than I do, but in my opinion, you have had just too many surgeries and you should not be in this bad of shape.

I am so sorry you are going through this!

Ingrid

-----Original Message-----From: kimmie3_us [mailto:kimmie3_us@...]Sent: Monday, December 15, 2003 1:59 PMcholesteatoma Subject: Confusing Prognosis.......Help!!!First off I have just caught up on all the posts & I want to wish everyone who has had or are scheduled for surgery a speedy recovery!!I went to the surgeon last week & was informed of a confusing prognosis & was wondering if anyone has any thoughts or ideas.I have had 20 plus surgeries for c-toma & reconstructions over the past 30 years.I have repeated recurrances of c-toma in both ears. My last surgery was in October of this year. Since then I have had extreme dizziness,constant foul drainage,{ now in both ears },alot of fatigue, & my eyesight has started to have bouts of bluriness. My surgeon again suctioned the left ear { most recent surgery }, the right ear was to raw & inflamed so he spared me the pain of suctioning it.After the treatment he sat down & explained to me what to expect from here on out. He said I had no eustachian tubes on either side. Both eardrums are totally retracted.I was told that because of the repeated surgeries & lots of scar tissue that there was absolutley no room to have new tubes inserted. This presents the problem of no control of pressure & drainage of both ears. So there is no way to pop my ears either. W/ all this my chances of the c-toma returning are really great & expected. I was told I could expect all my symptoms to just be w/ me from here on out. He said he could take my money & do minor surgeries to relieve the pain, & etc. but he would just be putting me thru something that would not benefit me whatsoever & he refuses to do that. He said I could expect alot more dizziness & these feelings of spaciness as things progressed. The only surgery he will do on me is for any more recurrances of the c-toma. Outside of that we just manage it as best we can.I am still on the Cipro drops, now in both ears. He also gave me nasal spray to help the sinuses because of the drainage factor. He said this kind was not addicting.I would like to ask if anybody has any knowledge of all this or any ideas. Right now I am just really confused. I have been thru so much for so long w/ my ears that I am starting to get a tad depressed. Its not the end of the world I know. My hearing is way down again but I have no way of knowing if its because of all the backup of drainage & infection or if the bones are starting to erode AGAIN.Thanks for listening & any info would be so much appreciated.I wish you all a Safe & Happy Holiday Season!!kimi

[Guest guest]

Kimi,

I'm so sorry that you are going through so much but I strongly agree with Ingrid. You need another opinion from a different otologist. Don't give up hope, new treatments are being tried all the time so please go see a new otologist.

Best of luck and hang in there. Have a good holiday.

Gus

Confusing Prognosis.......Help!!!

First off I have just caught up on all the posts & I want to wish everyone who has had or are scheduled for surgery a speedy recovery!!I went to the surgeon last week & was informed of a confusing prognosis & was wondering if anyone has any thoughts or ideas.I have had 20 plus surgeries for c-toma & reconstructions over the past 30 years.I have repeated recurrances of c-toma in both ears. My last surgery was in October of this year. Since then I have had extreme dizziness,constant foul drainage,{ now in both ears },alot of fatigue, & my eyesight has started to have bouts of bluriness. My surgeon again suctioned the left ear { most recent surgery }, the right ear was to raw & inflamed so he spared me the pain of suctioning it.After the treatment he sat down & explained to me what to expect from here on out. He said I had no eustachian tubes on either side. Both eardrums are totally retracted.I was told that because of the repeated surgeries & lots of scar tissue that there was absolutley no room to have new tubes inserted. This presents the problem of no control of pressure & drainage of both ears. So there is no way to pop my ears either. W/ all this my chances of the c-toma returning are really great & expected. I was told I could expect all my symptoms to just be w/ me from here on out. He said he could take my money & do minor surgeries to relieve the pain, & etc. but he would just be putting me thru something that would not benefit me whatsoever & he refuses to do that. He said I could expect alot more dizziness & these feelings of spaciness as things progressed. The only surgery he will do on me is for any more recurrances of the c-toma. Outside of that we just manage it as best we can.I am still on the Cipro drops, now in both ears. He also gave me nasal spray to help the sinuses because of the drainage factor. He said this kind was not addicting.I would like to ask if anybody has any knowledge of all this or any ideas. Right now I am just really confused. I have been thru so much for so long w/ my ears that I am starting to get a tad depressed. Its not the end of the world I know. My hearing is way down again but I have no way of knowing if its because of all the backup of drainage & infection or if the bones are starting to erode AGAIN.Thanks for listening & any info would be so much appreciated.I wish you all a Safe & Happy Holiday Season!!kimi

[Guest guest]

I also strongly agree with Ingrid and Gus that you need to seek out

another opinion. With the advances of medical science in the last

few years I'd find it unacceptable for a doctor to tell me that all

he can do is operate on the c-toma.

When I first learned of this disease my doctor told me that the only

priority was to make my ear healthy (and worry about hearing

later)....it seems to me as if it is all about being proactive.

Don't give up! Good luck and keep us posted.

> Kimi,

>

> I'm so sorry that you are going through so much but I strongly

agree with Ingrid. You need another opinion from a different

otologist. Don't give up hope, new treatments are being tried all

the time so please go see a new otologist.

>

> Best of luck and hang in there. Have a good holiday.

>

> Gus

> Confusing Prognosis.......Help!!!

>

>

> First off I have just caught up on all the posts & I want to

wish

> everyone who has had or are scheduled for surgery a speedy

recovery!!

>

> I went to the surgeon last week & was informed of a confusing

> prognosis & was wondering if anyone has any thoughts or ideas.

>

> I have had 20 plus surgeries for c-toma & reconstructions over

the

> past 30 years.I have repeated recurrances of c-toma in both

ears. My

> last surgery was in October of this year. Since then I have had

> extreme dizziness,constant foul drainage,{ now in both

ears },alot

> of fatigue, & my eyesight has started to have bouts of

bluriness. My

> surgeon again suctioned the left ear { most recent surgery },

the

> right ear was to raw & inflamed so he spared me the pain of

> suctioning it.

> After the treatment he sat down & explained to me what to expect

> from here on out. He said I had no eustachian tubes on either

side.

> Both eardrums are totally retracted.I was told that because of

the

> repeated surgeries & lots of scar tissue that there was

absolutley

> no room to have new tubes inserted. This presents the problem of

no

> control of pressure & drainage of both ears. So there is no way

to

> pop my ears either. W/ all this my chances of the c-toma

returning

> are really great & expected. I was told I could expect all my

> symptoms to just be w/ me from here on out. He said he could

take my

> money & do minor surgeries to relieve the pain, & etc. but he

would

> just be putting me thru something that would not benefit me

> whatsoever & he refuses to do that. He said I could expect alot

more

> dizziness & these feelings of spaciness as things progressed.

The

> only surgery he will do on me is for any more recurrances of the

c-

> toma. Outside of that we just manage it as best we can.

> I am still on the Cipro drops, now in both ears. He also gave me

> nasal spray to help the sinuses because of the drainage factor.

He

> said this kind was not addicting.

> I would like to ask if anybody has any knowledge of all this or

any

> ideas. Right now I am just really confused. I have been thru so

much

> for so long w/ my ears that I am starting to get a tad

depressed.

> Its not the end of the world I know. My hearing is way down

again

> but I have no way of knowing if its because of all the backup of

> drainage & infection or if the bones are starting to erode AGAIN.

> Thanks for listening & any info would be so much appreciated.

>

> I wish you all a Safe & Happy Holiday Season!!

> kimi

>

>

>

[Guest guest]

Hi Kimi,

I ring in here too. Go for a second opinion. I wouldn't settle for

that prognosis until I've exhausted all options.

I'm sorry you are going through all this. That really sucks.

Connie

> First off I have just caught up on all the posts & I want to wish

> everyone who has had or are scheduled for surgery a speedy recovery!!

>

> I went to the surgeon last week & was informed of a confusing

> prognosis & was wondering if anyone has any thoughts or ideas.

>

> I have had 20 plus surgeries for c-toma & reconstructions over the

> past 30 years.I have repeated recurrances of c-toma in both ears. My

> last surgery was in October of this year. Since then I have had

> extreme dizziness,constant foul drainage,{ now in both ears },alot

> of fatigue, & my eyesight has started to have bouts of bluriness. My

> surgeon again suctioned the left ear { most recent surgery }, the

> right ear was to raw & inflamed so he spared me the pain of

> suctioning it.

> After the treatment he sat down & explained to me what to expect

> from here on out. He said I had no eustachian tubes on either side.

> Both eardrums are totally retracted.I was told that because of the

> repeated surgeries & lots of scar tissue that there was absolutley

> no room to have new tubes inserted. This presents the problem of no

> control of pressure & drainage of both ears. So there is no way to

> pop my ears either. W/ all this my chances of the c-toma returning

> are really great & expected. I was told I could expect all my

> symptoms to just be w/ me from here on out. He said he could take my

> money & do minor surgeries to relieve the pain, & etc. but he would

> just be putting me thru something that would not benefit me

> whatsoever & he refuses to do that. He said I could expect alot more

> dizziness & these feelings of spaciness as things progressed. The

> only surgery he will do on me is for any more recurrances of the c-

> toma. Outside of that we just manage it as best we can.

> I am still on the Cipro drops, now in both ears. He also gave me

> nasal spray to help the sinuses because of the drainage factor. He

> said this kind was not addicting.

> I would like to ask if anybody has any knowledge of all this or any

> ideas. Right now I am just really confused. I have been thru so much

> for so long w/ my ears that I am starting to get a tad depressed.

> Its not the end of the world I know. My hearing is way down again

> but I have no way of knowing if its because of all the backup of

> drainage & infection or if the bones are starting to erode AGAIN.

> Thanks for listening & any info would be so much appreciated.

>

> I wish you all a Safe & Happy Holiday Season!!

> kimi

[Guest guest]

Hi Kimi, I have had one c-toma surgery, and many reconstructive

surgeries for many years. I have congential c-toma. You have had so

much more done. I do hope you the best getting help. I am encouraged

by you. I know no one else with this condition, till I found this

group. So I look up to you and the others going through so much more

than myself. I have faith that you will find the care you need to get

better. I have you in my prayers. I for one never heard of an

Otologist till I joined the group. Personally I have great faith in

my Doctor, but......I am going to get another opinion, from the

Otoligist. I just have to find one in the Greater Cincinnati area

(USA). I think you would benifit from another opinion too. There is

always hope. New things are around now we did not have 20 years ago.

I am pulling for you Kimi, and the others here as well. I have

noticed blurred vision these past 6 months myself. Do you know if any

one has ever lost there vision because of this? I know you do not

feel good, but I wish you a happy holiday. Feel better soon.

> First off I have just caught up on all the posts & I want to wish

> everyone who has had or are scheduled for surgery a speedy

recovery!!

>

> I went to the surgeon last week & was informed of a confusing

> prognosis & was wondering if anyone has any thoughts or ideas.

>

> I have had 20 plus surgeries for c-toma & reconstructions over the

> past 30 years.I have repeated recurrances of c-toma in both ears.

My

> last surgery was in October of this year. Since then I have had

> extreme dizziness,constant foul drainage,{ now in both ears },alot

> of fatigue, & my eyesight has started to have bouts of bluriness.

My

> surgeon again suctioned the left ear { most recent surgery }, the

> right ear was to raw & inflamed so he spared me the pain of

> suctioning it.

> After the treatment he sat down & explained to me what to expect

> from here on out. He said I had no eustachian tubes on either side.

> Both eardrums are totally retracted.I was told that because of the

> repeated surgeries & lots of scar tissue that there was absolutley

> no room to have new tubes inserted. This presents the problem of no

> control of pressure & drainage of both ears. So there is no way to

> pop my ears either. W/ all this my chances of the c-toma returning

> are really great & expected. I was told I could expect all symptoms

to just be w/ me from here on out. He said he could take my

> money & do minor surgeries to relieve the pain, & etc. but he would

> just be putting me thru something that would not benefit me

> whatsoever & he refuses to do that. He said I could expect alot

more

> dizziness & these feelings of spaciness as things progressed. The

> only surgery he will do on me is for any more recurrances of the c-

> toma. Outside of that we just manage it as best we can.

> I am still on the Cipro drops, now in both ears. He also gave me

> nasal spray to help the sinuses because of the drainage factor. He

> said this kind was not addicting.

> I would like to ask if anybody has any knowledge of all this or any

> ideas. Right now I am just really confused. I have been thru so

much

> for so long w/ my ears that I am starting to get a tad depressed.

> Its not the end of the world I know. My hearing is way down again

> but I have no way of knowing if its because of all the backup of

> drainage & infection or if the bones are starting to erode AGAIN.

> Thanks for listening & any info would be so much appreciated.

>

> I wish you all a Safe & Happy Holiday Season!!

> kimi

[Guest guest]

---Thank you so much!! Like you I find this group & all the folks in

it very encouraging. Its also very sad to me that so many suffer

from this. But also very rewarding when I hear of their success in

battling this ugly monster.

I was brought to tears when you said you looked up to me &

others. We really don't think in our situations that we can be of

help but I am so glad that I can be of any help to you. Thank you

very much !!

So you live in the Cincinati area? Thats wild, I live in central

Ohio ! You are like 2 hours away from me. I have always gone to

Columbus for my surgeries. Perhaps I will change directions & search

in your area for a second opinion. I have never considered going

south to look. You have helped me already w/ planting the idea to

look in your area !!!

Maybe you can keep me posted on your search !!!!!!

Safe & Happy Holidays !

kimi

In cholesteatoma , mountainmama07@y... wrote:

> Hi Kimi, I have had one c-toma surgery, and many reconstructive

> surgeries for many years. I have congential c-toma. You have had

so

> much more done. I do hope you the best getting help. I am

encouraged

> by you. I know no one else with this condition, till I found this

> group. So I look up to you and the others going through so much

more

> than myself. I have faith that you will find the care you need to

get

> better. I have you in my prayers. I for one never heard of an

> Otologist till I joined the group. Personally I have great faith

in

> my Doctor, but......I am going to get another opinion, from the

> Otoligist. I just have to find one in the Greater Cincinnati area

> (USA). I think you would benifit from another opinion too. There

is

> always hope. New things are around now we did not have 20 years

ago.

> I am pulling for you Kimi, and the others here as well. I have

> noticed blurred vision these past 6 months myself. Do you know if

any

> one has ever lost there vision because of this? I know you do not

> feel good, but I wish you a happy holiday. Feel better soon.

>

>

>

>

>

>

>

> > First off I have just caught up on all the posts & I want to

wish

> > everyone who has had or are scheduled for surgery a speedy

> recovery!!

> >

> > I went to the surgeon last week & was informed of a confusing

> > prognosis & was wondering if anyone has any thoughts or ideas.

> >

> > I have had 20 plus surgeries for c-toma & reconstructions over

the

> > past 30 years.I have repeated recurrances of c-toma in both

ears.

> My

> > last surgery was in October of this year. Since then I have had

> > extreme dizziness,constant foul drainage,{ now in both

ears },alot

> > of fatigue, & my eyesight has started to have bouts of

bluriness.

> My

> > surgeon again suctioned the left ear { most recent surgery },

the

> > right ear was to raw & inflamed so he spared me the pain of

> > suctioning it.

> > After the treatment he sat down & explained to me what to expect

> > from here on out. He said I had no eustachian tubes on either

side.

> > Both eardrums are totally retracted.I was told that because of

the

> > repeated surgeries & lots of scar tissue that there was

absolutley

> > no room to have new tubes inserted. This presents the problem of

no

> > control of pressure & drainage of both ears. So there is no way

to

> > pop my ears either. W/ all this my chances of the c-toma

returning

> > are really great & expected. I was told I could expect all

symptoms

> to just be w/ me from here on out. He said he could take my

> > money & do minor surgeries to relieve the pain, & etc. but he

would

> > just be putting me thru something that would not benefit me

> > whatsoever & he refuses to do that. He said I could expect alot

> more

> > dizziness & these feelings of spaciness as things progressed.

The

> > only surgery he will do on me is for any more recurrances of the

c-

> > toma. Outside of that we just manage it as best we can.

> > I am still on the Cipro drops, now in both ears. He also gave me

> > nasal spray to help the sinuses because of the drainage factor.

He

> > said this kind was not addicting.

> > I would like to ask if anybody has any knowledge of all this or

any

> > ideas. Right now I am just really confused. I have been thru so

> much

> > for so long w/ my ears that I am starting to get a tad

depressed.

> > Its not the end of the world I know. My hearing is way down

again

> > but I have no way of knowing if its because of all the backup of

> > drainage & infection or if the bones are starting to erode AGAIN.

> > Thanks for listening & any info would be so much appreciated.

> >

> > I wish you all a Safe & Happy Holiday Season!!

> > kimi

[Guest guest]

kimi, Iam very sorry to here that! I to am feeling low--I just went to a different ENT today and found out my c-toma has returned in the right ear. I go to get a ct next week. But most of my pain is in the left ear.. The pressure I have on that side is unbearable--my eustachian tubes also are just about spent. I live on nose sprays and loritabs. The doctor told me "get use to the pain juliana, there is nothing I can do to help you". What a thing to hear! My heart goes out to you though. I've only had 6 surgerys and I guess soon it will be 7. Good Luck

na

[Guest guest]

---

na,

I really feel for you that the c-toma has returned. Did the

doc say why there is more pain in the left ear? Is it because of

your tube? I haven't had any pain meds for awhile but I have been

thinking of calling & asking for some. This pain gets old real quick

doesn't it?

What all surgeries have you had? I hate to hear you have to

get another one. I understand about feeling low. My mom always says

things happen for a reason. But what the reason for dealing w/ c-

toma is totally beyond me !! I'll keep you in my thoughts & prayers.

kimi

In cholesteatoma , julsm123@a... wrote:

> kimi, Iam very sorry to here that! I to am feeling low--I just

went to a

> different ENT today and found out my c-toma has returned in the

right ear. I go

> to get a ct next week. But most of my pain is in the left ear..

The pressure

> I have on that side is unbearable--my eustachian tubes also are

just about

> spent. I live on nose sprays and loritabs. The doctor told

me " get use to the

> pain juliana, there is nothing I can do to help you " . What a

thing to hear!

> My heart goes out to you though. I've only had 6 surgerys and I

guess soon it

> will be 7. Good Luck

> na

[Guest guest]

Hi Kimi, I found so much hope through you, and the others. I have

this horrible illness. I actually live in Indiana, Lawrenceburg is

the closest town to me. I go to Cincinnati for my treatments. They

have the bigger and better hospitals for me to get to. I have friends

who are surgical assistants in the Cincinnati Hospitals for many

years. My friends sis- in- law is the one who puts people to sleep

for surgery. I know people who work Insurance claims, and they have

good leads on Doctors. I am calling around to collect info on

Otologist in Cincinnati, Ohio. My friend " when " I find a good one I

will most definatly share with you. I have faith in my Doctor. But I

think it is time to get another take on things. It can not hurt. I am

scared to do this. I just hope I made the right moves along the way

involving my care. Now I know the word Otologist, I am going to see

one. My ENT Specialist is a grad of Yale University, been my Doc for

over 20 years. He is really good. I love him to no end. We have

become friends over the years. I just want to see a Doc who does

nothing but ears. I guess I want to be told I am ok as ok can be with

this disease. Especially after all the post I have read on here about

ENT Doctors. If you have any leads I would be interested also. I

know we need to find some help because this has gone on all our

lives. You have had a lot more surgeries,and more extensive problems

than me. I am only on number 20. I never thought I would ever know

any one with this history. Bless your heart. It is a long and hard

road, it breaks my heart you have gone through all this, and still

having trouble. Yes... you and the other people here have shown me

not to give up, that this disease progresses, and that there is hope.

My Doctor says there is " always hope " all the time. If any one has

any leads on Otologist in the greater Cincinnati area I would

appreciate the leads. Kimi bless you in your search of a good

Otologist. I will do every thing I can to help you find good care. As

I am looking also for myself. Just hang on and do the best you can.

Some one will give us advise here. Be well.......

> > > First off I have just caught up on all the posts & I want to

> wish

> > > everyone who has had or are scheduled for surgery a speedy

> > recovery!!

> > >

> > > I went to the surgeon last week & was informed of a confusing

> > > prognosis & was wondering if anyone has any thoughts or ideas.

> > >

> > > I have had 20 plus surgeries for c-toma & reconstructions over

> the

> > > past 30 years.I have repeated recurrances of c-toma in both

> ears.

> > My

> > > last surgery was in October of this year. Since then I have had

> > > extreme dizziness,constant foul drainage,{ now in both

> ears },alot

> > > of fatigue, & my eyesight has started to have bouts of

> bluriness.

> > My

> > > surgeon again suctioned the left ear { most recent surgery },

> the

> > > right ear was to raw & inflamed so he spared me the pain of

> > > suctioning it.

> > > After the treatment he sat down & explained to me what to

expect

> > > from here on out. He said I had no eustachian tubes on either

> side.

> > > Both eardrums are totally retracted.I was told that because of

> the

> > > repeated surgeries & lots of scar tissue that there was

> absolutley

> > > no room to have new tubes inserted. This presents the problem

of

> no

> > > control of pressure & drainage of both ears. So there is no way

> to

> > > pop my ears either. W/ all this my chances of the c-toma

> returning

> > > are really great & expected. I was told I could expect all

> symptoms

> > to just be w/ me from here on out. He said he could take my

> > > money & do minor surgeries to relieve the pain, & etc. but he

> would

> > > just be putting me thru something that would not benefit me

> > > whatsoever & he refuses to do that. He said I could expect alot

> > more

> > > dizziness & these feelings of spaciness as things progressed.

> The

> > > only surgery he will do on me is for any more recurrances of

the

> c-

> > > toma. Outside of that we just manage it as best we can.

> > > I am still on the Cipro drops, now in both ears. He also gave

me

> > > nasal spray to help the sinuses because of the drainage factor.

> He

> > > said this kind was not addicting.

> > > I would like to ask if anybody has any knowledge of all this or

> any

> > > ideas. Right now I am just really confused. I have been thru so

> > much

> > > for so long w/ my ears that I am starting to get a tad

> depressed.

> > > Its not the end of the world I know. My hearing is way down

> again

> > > but I have no way of knowing if its because of all the backup

of

> > > drainage & infection or if the bones are starting to erode

AGAIN.

> > > Thanks for listening & any info would be so much appreciated.

> > >

> > > I wish you all a Safe & Happy Holiday Season!!

> > > kimi

[Guest guest]

---Hi,

Like you I have always thought I would never meet anybody who

has had so many surgeries & so many fights w/ c-toma. 20

surgeries.......wow, you have been thru alot also!!! Also like you I

have stayed w/ the same doctors thru out my whole life. I am scared

to death to go to another one. This business of letting someone cut

into your head is some serious stuff, not to be taken lightly right?

So the fear is real & neverending.

I would like very much to hear about any new doctors you find.

I'll keep you updated if I find any also.

We have to keep the faith even when we think we've had enough.

There have been times when I have just felt like saying the hell w/

it all, what happens, happens. But.......I just pull myself up by

the boot straps & go on. LOL!!! This is a very frustrating & dreaded

disease to fight. But we can fight it & win. I am just really

thankful that thru reconstructive surgeries & all the bones I have

had replaced that I have had many good hearing years !!!!! No matter

what....thats a good thing !!!!!!!!!!!

Stay strong & be well......we can do this !!!!

kimi

In cholesteatoma , mountainmama07@y... wrote:

> Hi Kimi, I found so much hope through you, and the others. I have

> this horrible illness. I actually live in Indiana, Lawrenceburg

is

> the closest town to me. I go to Cincinnati for my treatments.

They

> have the bigger and better hospitals for me to get to. I have

friends

> who are surgical assistants in the Cincinnati Hospitals for many

> years. My friends sis- in- law is the one who puts people to

sleep

> for surgery. I know people who work Insurance claims, and they

have

> good leads on Doctors. I am calling around to collect info on

> Otologist in Cincinnati, Ohio. My friend " when " I find a good one

I

> will most definatly share with you. I have faith in my Doctor. But

I

> think it is time to get another take on things. It can not hurt. I

am

> scared to do this. I just hope I made the right moves along the

way

> involving my care. Now I know the word Otologist, I am going to

see

> one. My ENT Specialist is a grad of Yale University, been my Doc

for

> over 20 years. He is really good. I love him to no end. We have

> become friends over the years. I just want to see a Doc who does

> nothing but ears. I guess I want to be told I am ok as ok can be

with

> this disease. Especially after all the post I have read on here

about

> ENT Doctors. If you have any leads I would be interested also. I

> know we need to find some help because this has gone on all our

> lives. You have had a lot more surgeries,and more extensive

problems

> than me. I am only on number 20. I never thought I would ever know

> any one with this history. Bless your heart. It is a long and

hard

> road, it breaks my heart you have gone through all this, and still

> having trouble. Yes... you and the other people here have shown me

> not to give up, that this disease progresses, and that there is

hope.

> My Doctor says there is " always hope " all the time. If any one has

> any leads on Otologist in the greater Cincinnati area I would

> appreciate the leads. Kimi bless you in your search of a good

> Otologist. I will do every thing I can to help you find good care.

As

> I am looking also for myself. Just hang on and do the best you

can.

> Some one will give us advise here. Be well.......

>

>

>

>

> > > > First off I have just caught up on all the posts & I want to

> > wish

> > > > everyone who has had or are scheduled for surgery a speedy

> > > recovery!!

> > > >

> > > > I went to the surgeon last week & was informed of a

confusing

> > > > prognosis & was wondering if anyone has any thoughts or

ideas.

> > > >

> > > > I have had 20 plus surgeries for c-toma & reconstructions

over

> > the

> > > > past 30 years.I have repeated recurrances of c-toma in both

> > ears.

> > > My

> > > > last surgery was in October of this year. Since then I have

had

> > > > extreme dizziness,constant foul drainage,{ now in both

> > ears },alot

> > > > of fatigue, & my eyesight has started to have bouts of

> > bluriness.

> > > My

> > > > surgeon again suctioned the left ear { most recent

surgery },

> > the

> > > > right ear was to raw & inflamed so he spared me the pain of

> > > > suctioning it.

> > > > After the treatment he sat down & explained to me what to

> expect

> > > > from here on out. He said I had no eustachian tubes on

either

> > side.

> > > > Both eardrums are totally retracted.I was told that because

of

> > the

> > > > repeated surgeries & lots of scar tissue that there was

> > absolutley

> > > > no room to have new tubes inserted. This presents the

problem

> of

> > no

> > > > control of pressure & drainage of both ears. So there is no

way

> > to

> > > > pop my ears either. W/ all this my chances of the c-toma

> > returning

> > > > are really great & expected. I was told I could expect all

> > symptoms

> > > to just be w/ me from here on out. He said he could take my

> > > > money & do minor surgeries to relieve the pain, & etc. but

he

> > would

> > > > just be putting me thru something that would not benefit me

> > > > whatsoever & he refuses to do that. He said I could expect

alot

> > > more

> > > > dizziness & these feelings of spaciness as things

progressed.

> > The

> > > > only surgery he will do on me is for any more recurrances of

> the

> > c-

> > > > toma. Outside of that we just manage it as best we can.

> > > > I am still on the Cipro drops, now in both ears. He also

gave

> me

> > > > nasal spray to help the sinuses because of the drainage

factor.

> > He

> > > > said this kind was not addicting.

> > > > I would like to ask if anybody has any knowledge of all this

or

> > any

> > > > ideas. Right now I am just really confused. I have been thru

so

> > > much

> > > > for so long w/ my ears that I am starting to get a tad

> > depressed.

> > > > Its not the end of the world I know. My hearing is way down

> > again

> > > > but I have no way of knowing if its because of all the

backup

> of

> > > > drainage & infection or if the bones are starting to erode

> AGAIN.

> > > > Thanks for listening & any info would be so much appreciated.

> > > >

> > > > I wish you all a Safe & Happy Holiday Season!!

> > > > kimi

[Guest guest]

Thank you sooo much. It means alot to me just to be able to vent how I feel. I think sometimes the Doctors think iam creating this in my head (pain that is ) and then sometimes I feel ; "well am I ?" I know I am not. Its real and its there. But what do you do....Get a second opinion! Thanks again

na

[Guest guest]

Hello Kimi, lets see...in March of 2000 I had my first surgery... I have or rather had an Extensive infiltrating C-Toma... Both ears. I had a CWD (canal wall down) Mastoidectiomy, Tympanoplasty, Meatoplasty, OCR, Ossiculopasty..........traumactic removal of the anterior footplate with the stapedial tendon cut (that one was just the left ear)..The C-toma was removed from the Mastiod tip which was angled next to the posterior fossa dura and the temporal lobe dura and the attic--It took a little over 11 hours to do that one surgery and that was with two Doctors, boy was my body sore ..felt like i was run over by a mac-truck!

About 5 months later I had my reconstruction (fake earbones and eardrum). Five months or sixmonths later I had my other ear c-toma taken out then 5 months later the reconsrtuction on that--- Four surgerys but when I was younger I had the tubes put in my ears so I guess all together 6. And frankly...I dont want any more! But I guess I really don"t have a say.

na

[Guest guest]

Hi na, wow you have been around the block havent you! I know

that was hard to do. I am glad you got through it all. I believe 11

hours is the longest surgery that I know of. I am still new here, so

I dont know if there are others with that lengthly surgery. I imagene

it took you some time to get back on your feet after that one. I been

reading your post. I hope all is going ok for you. My ear hurts but

it is rainy and snowing here in Indiana. So it comes with the winter.

You be well! Happy holidays to you.

> Hello Kimi, lets see...in March of 2000 I had my first surgery... I

have or

> rather had an Extensive infiltrating C-Toma... Both ears. I had a

CWD (canal

> wall down) Mastoidectiomy, Tympanoplasty, Meatoplasty, OCR,

> Ossiculopasty..........traumactic removal of the anterior footplate

with the stapedial tendon

> cut (that one was just the left ear)..The C-toma was removed from

the Mastiod

> tip which was angled next to the posterior fossa dura and the

temporal lobe dura

> and the attic--It took a little over 11 hours to do that one

surgery and that

> was with two Doctors, boy was my body sore ..felt like i was run

over by a

> mac-truck!

> About 5 months later I had my reconstruction (fake earbones and

eardrum).

> Five months or sixmonths later I had my other ear c-toma taken out

then 5 months

> later the reconsrtuction on that--- Four surgerys but when I was

younger I

> had the tubes put in my ears so I guess all together 6. And

frankly...I dont

> want any more! But I guess I really don " t have a say.

> na