New Member

[Guest guest]

Welcome Tammy! Ask any questions you have as you go along and someone will chime

in with an answer. We're all just a few steps ahead of you. My name is Flo and I

live in land. I had surgery on May 31st at 304 pounds and I weighed 179 a

few weeks ago. I feel fine and am amazed every day at the energy I have. I'm 58

so I'm one of the senior members....and there are quite a few of us on

here...right Pat and Pat? Your weigh loss is great Tammy.

Flo from land

[Guest guest]

Welcome, Tammy. Sorry I missed the Texas meeting. I will try to make the next

one. 40 pounds is awesome!!!

Pat Eppler in Tyler

New Member

Hi,

My name is Tammy Hall, and I had surgery with Dr. Rutledge on March 7, 2001.

I have lost 40 lbs. so far.

I am so glad to finally be on the other side with you guys. I am feeling

great so far, but I would love to ask yall questions when they come up. I went

to a Support Group meeting yesterday in Texas for all of us in the metroplex.

It was wonderful to finally put faces with all the names I have been seeing in

my emails over the last few months.

I look forward to talking and sharing with you guys - I'm glad I was finally

able to join.

Thanks

Tammy Hall

[Guest guest]

Right, Flo. Next month I hit 61--can't believe it--don't feel like it and

hopefully don't look it either.

Pat Eppler in Tyler, TX

RE: New Member

Welcome Tammy! Ask any questions you have as you go along and someone will

chime in with an answer. We're all just a few steps ahead of you. My name is Flo

and I live in land. I had surgery on May 31st at 304 pounds and I weighed

179 a few weeks ago. I feel fine and am amazed every day at the energy I have.

I'm 58 so I'm one of the senior members....and there are quite a few of us on

here...right Pat and Pat? Your weigh loss is great Tammy.

Flo from land

[Guest guest]

--- , " Pat Eppler " wrote:

I hit 61--can't believe it--don't feel like

it and hopefully don't look it either.

No WAY!!!! You look gorgeous, skinny and not day over 45!!!

Love

Lori

>

> Pat Eppler in Tyler, TX

> RE: New Member

>

>

> Welcome Tammy! Ask any questions you have as you go along and

someone will chime in with an answer. We're all just a few steps ahead

of you. My name is Flo and I live in land. I had surgery on May

31st at 304 pounds and I weighed 179 a few weeks ago. I feel fine and

am amazed every day at the energy I have. I'm 58 so I'm one of the

senior members....and there are quite a few of us on here...right Pat

and Pat? Your weigh loss is great Tammy.

>

> Flo from land

>

>

>

>

>

>

[Guest guest]

Tammy

WELCOME....plz feel free to post anytime. We are all here to support one

another.

Joni

Seattle

12/22/01

231/186/138

[Guest guest]

Love you, Lori!!!!!!! That has made my day!!!!!

Pat

RE: New Member

>

>

> Welcome Tammy! Ask any questions you have as you go along and

someone will chime in with an answer. We're all just a few steps ahead

of you. My name is Flo and I live in land. I had surgery on May

31st at 304 pounds and I weighed 179 a few weeks ago. I feel fine and

am amazed every day at the energy I have. I'm 58 so I'm one of the

senior members....and there are quite a few of us on here...right Pat

and Pat? Your weigh loss is great Tammy.

>

> Flo from land

>

>

>

>

>

>

[Guest guest]

Shirl!

Can't answer your question but can say WOW at that weight loss! You go girl!

If you keep that up, Ally McBeal will need a new job! HAHA

HUGS

in Ark

3-08

322-272

[Guest guest]

Tammy,

I was at the same meeting. I'm terrible with putting names and faces

together. Were you the one there with a freind that is thinking about

having the surgery? I look forward to hearing from you.

Melody

MGB

3/22/01

240/209

New Member

> Hi,

> My name is Tammy Hall, and I had surgery with Dr. Rutledge on March 7,

2001. I have lost 40 lbs. so far.

> I am so glad to finally be on the other side with you guys. I am feeling

great so far, but I would love to ask yall questions when they come up. I

went to a Support Group meeting yesterday in Texas for all of us in the

metroplex. It was wonderful to finally put faces with all the names I have

been seeing in my emails over the last few months.

> I look forward to talking and sharing with you guys - I'm glad I was

finally able to join.

>

> Thanks

> Tammy Hall

>

>

>

[Guest guest]

--- Hi and congratulations.......

Since the first 3 months are usually the most weight loss the

frequencies will slow down. Its fat so this is a good thing some of

us had it severe for 3-4 months. I remember promising not to eat

sugar because that seemed to go thru me quicker, but there is really

no rhyme or understandable reasoning other than the fat has to leave

somehow!!!!!!!

Lori

will seem like foreverIn @y..., shirltrotter@h... wrote:

> Hello, I am so happy to be able to finally post on this side. I had

> surgery with Dr. R. on 3/28/2001 at DRH. I was one of the last to

> have surgery there before he stopped.

>

> I have lost 43 pounds, I have been trying to get on the post op

side

> for over 3 weeks now. I have been so anxious to read everything

you

> post ops have to say. I have lots of questions, but don't know

where

> to begin.

>

> I guess I should ask the grossest first. How much longer are these

> emergency bathroom stops going to last? There is no way that much

> can come from what I eat!

>

> Please email me personally at shirltrotter@h... Thanks

>

> Shirl in WV

> MGB 3/28/01

> -43

[Guest guest]

Yes I brought my niece with me to the meeting.

New Member

>

>

> > Hi,

> > My name is Tammy Hall, and I had surgery with Dr. Rutledge on March 7,

> 2001. I have lost 40 lbs. so far.

> > I am so glad to finally be on the other side with you guys. I am

feeling

> great so far, but I would love to ask yall questions when they come up. I

> went to a Support Group meeting yesterday in Texas for all of us in the

> metroplex. It was wonderful to finally put faces with all the names I

have

> been seeing in my emails over the last few months.

> > I look forward to talking and sharing with you guys - I'm glad I was

> finally able to join.

> >

> > Thanks

> > Tammy Hall

> >

> >

> >

[Guest guest]

Welcome, Shirl,

I'm seeing a pattern here. We have had a lot of discussion here about

quantity and frequency of pooping lately ;-)...welcome to the club! I

have no advice for you but when I stopped taking Actigall and started

taking Citrucel twice a day, the number of emergencies seemed to

decrease.

> Hello, I am so happy to be able to finally post on this side. I had

> surgery with Dr. R. on 3/28/2001 at DRH. I was one of the last to

> have surgery there before he stopped.

>

> I have lost 43 pounds, I have been trying to get on the post op side

> for over 3 weeks now. I have been so anxious to read everything you

> post ops have to say. I have lots of questions, but don't know

where

> to begin.

>

> I guess I should ask the grossest first. How much longer are these

> emergency bathroom stops going to last? There is no way that much

> can come from what I eat!

>

> Please email me personally at shirltrotter@h... Thanks

>

> Shirl in WV

> MGB 3/28/01

> -43

[Guest guest]

Hi Littermate! Wow, 43 lbs!! Happy 6 week anniversary - glad you finally

made it over here!

Tonya in MN

3-28-01

New Member

Hello, I am so happy to be able to finally post on this side. I had

surgery with Dr. R. on 3/28/2001 at DRH. I was one of the last to

have surgery there before he stopped.

I have lost 43 pounds, I have been trying to get on the post op side

for over 3 weeks now. I have been so anxious to read everything you

post ops have to say. I have lots of questions, but don't know where

to begin.

I guess I should ask the grossest first. How much longer are these

emergency bathroom stops going to last? There is no way that much

can come from what I eat!

Please email me personally at shirltrotter@.... Thanks

Shirl in WV

MGB 3/28/01

-43

[Guest guest]

Tammy,

How are you? I hope all is going well.

I have lost 36 pounds in 7 weeks. Yippeee

Eating is getting a little easier. Are you doing OK with all foods?

How is your neice? Has she made any decisions?

Email soon.

Melody

New Member

> >

> >

> > > Hi,

> > > My name is Tammy Hall, and I had surgery with Dr. Rutledge on March 7,

> > 2001. I have lost 40 lbs. so far.

> > > I am so glad to finally be on the other side with you guys. I am

> feeling

> > great so far, but I would love to ask yall questions when they come up.

I

> > went to a Support Group meeting yesterday in Texas for all of us in the

> > metroplex. It was wonderful to finally put faces with all the names I

> have

> > been seeing in my emails over the last few months.

> > > I look forward to talking and sharing with you guys - I'm glad I was

> > finally able to join.

> > >

> > > Thanks

> > > Tammy Hall

> > >

> > >

> > >

[Guest guest]

Hi, this is Michele

I just received an e-mail from . He

maintains another cholesteatoma group. Here's the

address: http://www.cholesteatoma.org. I was looking

into alternatives (you know anything but surgery) and

wrote and asked if he knew anything. He told me

to look up Case #290 on the above referenced website.

I haven't read it yet but apparently this guy has had

some success with homeopathy but I still think he went

through some surgeries. Check it out and let me know.

Doing research on the web, or anywhere else for that

matter is not fun. There really is nothing new going

on for this disease (according to my husbands dr., Dr.

O. McMenomey, Oregon Health Sciences University).

Let me know how it goes. Good luck.

Michele

--- billsue@... wrote:

> Hi everyone. Found this group this morning, trying

> to do some

> research about c-toma. My daughter is 15, just had

> surgery on her

> left ear this week. The doc said it was a small

> cyst, and did not

> cause too much damage. She had surgery 3 years ago

> on the r ear, that

> one caused pretty extensive bone erosion, and the

> doc did some

> reconstruction. Then there was a follow up surg.

> following that, 1 yr

> later, to make sure there was no more tissue

> regrowth. I'm just

> starting on web research, any info or thoughts on

> complimentary

> therapy, or alternative therapy's that might help

> the body heal

> better? Or maybe prevent any more cysts?

>

>

=====

Call 911, some sucker just stole our water!!!!!!

__________________________________________________

[Guest guest]

Welcome to the group. I'm sorry to hear about your daughter. I wish

I had info to share with you, but I am just starting to research

cholesteatoma myself. There doesn't seem to be much info

available...the only thing I find is " Surgery is the only option " .

That or prevention. It sounds like the best advice out there may be

to never-ever miss an appointment with your ENT. And, make sure your

ENT is GOOD.

It's been two years since your daughter's followup surgery on her

right ear. Has she had any more problems? Can she hear out of that

ear?

I wish your daughter a speedy and complete recovery for this week's

surgery. I have two daughters (13 and 17) and I know how hard

something like this would be on them at their age.

~ ~

> Hi everyone. Found this group this morning, trying to do some

> research about c-toma. My daughter is 15, just had surgery on her

> left ear this week. The doc said it was a small cyst, and did not

> cause too much damage. She had surgery 3 years ago on the r ear,

that

> one caused pretty extensive bone erosion, and the doc did some

> reconstruction. Then there was a follow up surg. following that, 1

yr

> later, to make sure there was no more tissue regrowth. I'm just

> starting on web research, any info or thoughts on complimentary

> therapy, or alternative therapy's that might help the body heal

> better? Or maybe prevent any more cysts?

[Guest guest]

Hi Carla, Welcome to the group! I agree, it is wonderful to find out

we aren't alone in this. If you ever have any questions, someone

here probably has had a similar experience and would love to share.

We hope you will share your story with us soon - as soon as you are

comfortable. Hang in there, you're not alone!

> i can not believe i found this, this site is amazing. i don't have

> the guts to post my story yet. i'm getting there. i was 6 i think

> when i had my first surgery. one of many. there is alot i don't

> remember, and being 19, alot i haven't experienced. these storys i

> read are so...brave. i'm very grateful for this site. i don't

feel

> so alone now. thank you to everyone who can put up with this. i

> don't know, but i feel like i have met a whole new family.

> carla

[Guest guest]

I can't believe I found this site, either, Carla. I've been

searching for years and had no luck! I am almost on the verge of

tears. Finally, someone has had the smarts to get this thing

posted! Thanks to whoever started it!

How many times has the cholesteatoma recurred since you were 6? I'm

worried that my son will have it recur for the rest of his life. He

had surgery back in February to fix a perforated eardrum and the

doctor found more cholesteatoma (unexpected). He was able to swim

this summer, but then infection occurred and the doctor found some

scar tissue that needed to be taken out. My son had surgery

yesterday and more cholesteatoma was found (on the eardrum). I'm

feeling a bit frustrated. He was a real trooper yesterday, and has

been, since this crazy thing started!

> i can not believe i found this, this site is amazing. i don't have

> the guts to post my story yet. i'm getting there. i was 6 i think

> when i had my first surgery. one of many. there is alot i don't

> remember, and being 19, alot i haven't experienced. these storys i

> read are so...brave. i'm very grateful for this site. i don't

feel

> so alone now. thank you to everyone who can put up with this. i

> don't know, but i feel like i have met a whole new family.

> carla

[Guest guest]

At 04:34 PM 3/8/2002 -0500, you wrote:

>Hi I'm new to the group. Figured I'd check out what others have

>experienced. I

>am in the process of scheduling my third removal of c-toma. I am 26 years old.

>I live in Northern New Jersey about 20 minutes from NYC. I was relieved

>to find

>out today my MRI results. They showed an extremely swollen temporal wall,

>which

>is definitely better than my brain creeping out of my skull (I had two doctors

>warn me that the c-toma may have caused meningitis or deterioration of the

>skull). I have had severe pressure, headaches and dizziness for the past two

>weeks. I've seen 4 ENT's, 1 Audiogram, 1 CT scan, 1 MRI in the last two

>weeks.

>I admittedly am useless at work because I cannot focus on anything for an

>extended period of time. I am having trouble sleeping. I've seen all these

>doctors and none of them have given me anything to relieve the symptoms.

Welcome to the group, Mark. This is a very supportive and informative

place to be. When is someone going to do something about your current

symptoms? Pain usually happens for a reason. What's your next step in

this process?

>A warning to those who have children going through this: request copies or

>original of any and all tests. Did you know most Doctors destroy files

>after 5

>years!

A very good warning, indeed. Most CT scans or MRI films aren't destroyed,

but paper copies of records manage to " disappear " sometimes.

>I had my first Tonsillectomy and tubes when I was 6 years old. Then tubes

>again

>when I was 9. Then a mastoidectomy for c-toma when I was 11. Then an

>eight hour

>surgery for c-toma and a prosthetic when I was 18. Surprisingly my

>hearing was

>pretty good up until 2 weeks ago. One of the Doctors told me the c-toma

>probably dislodged the prosthetic, other wise I might not have detected

>anything.

This is what happened to me about two years after my first surgery. I had

my prosthesis replaced two years ago, so far it's still there. I have a

feeling I'll probably have a first hand look at it before too long, but

I'll sit tight til then.

Good to have you here.

Diane Brunet

[Guest guest]

Hi Mark,

Welcome to the group. Glad you found us. Did you

have any trouble finding us? I'm just curious.

I'm sorry to hear that you are sitting at work in

pain.

Do you know if your c-toma was congental or acquired?

From what you write, it sounds like you will be in

surgery soon. Since the doctors were concerned about

about meningitis or deterioration, it must be close.

Does an MRI show everything? My husband had a CT scan

when he was first diagnosed (2 years, 2 ears, 1 tube,

and 4 surgeries ago) that the c-toma was large, but

when he actually did the surgery, the c-toma was even

larger than the CT scan showed. The first 2 surgeries

were on his left ear, the last being a canal wall

down. He also has a maximum conductive hearing loss

in that ear but he can hear with a hearing aide. When

he was getting ready for the 3rd surgery, also the

first on the right ear, I asked if a CT scan was

needed and the doctor said no because scans don't

always show everything. So far thing have gone ok

with the right ear. Only time will tell.

Please keep us updated and remember that this group is

here for you. You can rant and rave, bitch, anything

you need to vent your frustration. That's what we are

here for.

Take care, Michele

--- Mark Anema <mark.anema.b@...> wrote:

> Hi I'm new to the group. Figured I'd check out what

> others have experienced. I

> am in the process of scheduling my third removal of

> c-toma. I am 26 years old.

> I live in Northern New Jersey about 20 minutes from

> NYC. I was relieved to find

> out today my MRI results. They showed an extremely

> swollen temporal wall, which

> is definitely better than my brain creeping out of

> my skull (I had two doctors

> warn me that the c-toma may have caused meningitis

> or deterioration of the

> skull). I have had severe pressure, headaches and

> dizziness for the past two

> weeks. I've seen 4 ENT's, 1 Audiogram, 1 CT scan, 1

> MRI in the last two weeks.

> I admittedly am useless at work because I cannot

> focus on anything for an

> extended period of time. I am having trouble

> sleeping. I've seen all these

> doctors and none of them have given me anything to

> relieve the symptoms.

>

> A warning to those who have children going through

> this: request copies or

> original of any and all tests. Did you know most

> Doctors destroy files after 5

> years! When the c-toma comes back, it can several

> years later? It is good to

> have copies of post op. Audiograms and CT scans.

> Don't let the doctors tell you

> that you cannot have these records. They can

> charge you for copies but they

> cannot keep them from you.

>

> I had my first Tonsillectomy and tubes when I was 6

> years old. Then tubes again

> when I was 9. Then a mastoidectomy for c-toma when I

> was 11. Then an eight hour

> surgery for c-toma and a prosthetic when I was 18.

> Surprisingly my hearing was

> pretty good up until 2 weeks ago. One of the

> Doctors told me the c-toma

> probably dislodged the prosthetic, other wise I

> might not have detected

> anything.

>

>

> sitting at work in pain,

> Mark

>

>

>

>

>

__________________________________________________

[Guest guest]

Hi and welcome to the group, Mark Thank you for sharing your most amazing story with us. Have they scheduled your surgery yet? Please let us know when it is. I have a few questions....have you been seeing a doctor for yearly exams from the time you were 18 until present? Also, were you told as a child to keep water out of your ears...and did you? Have you ever thought that having tubes may have contributed to this? My daughter Alyssa (9) has had c-toma recur 3x in her left ear and it has claimed all of her hearing in it. She had canal wall down surgery last August. She is presently c-toma free, and goes every 3 months for a check.

Again, welcome to the group. We're all here to support each other throughout every stage of life with this terrible condition. Hope yoou start feeling better soon.

Take care,

[Guest guest]

Hi Mancie,

The Ctoma usually starts behind the eardrum and spreads from there. It is

VERY common for it to end up in the mastoid region. As for not knowing how

big it is, the doctor doesn't usually know untill he gets physically inside

your ear. CT's & MRI's don't show the whole picture. For more information

check out www.cholesteatoma.org. There are close to 500 case studies posted

and lots of other information as well.

Keep us informed. We do care.

God bless, Jane

>From: " mance8936 " <mance8936@...>

>Reply-cholesteatoma

>cholesteatoma

>Subject: New Member

>Date: Thu, 14 Mar 2002 22:25:00 -0000

>

>Hi everyone,

>

>My name is Mancie. I am 24 years old and was diagnosed with a

>cholesteatoma last month. I had a CT Scan and all the tests done. I

>will have surgery the end of this month. I have been searching all

>over the internet for more info on this and arrived here. I realize

>now that I know nothing on my condition, I don't know how big it is

>or exactly where it is, I just know it is in the mastoid bone. Is

>that where it normally is?

>

>Thanks for any help,

>Mancie

>

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

[Guest guest]

Hi Mancie,

I agree with Jane. C-tomas also tend to be larger

than the doctor expects, sometimes even more aggresive

than they thought.

Jane is right, please keep us informed.

Take care, Michele

--- Jane Blanchard <tribble7@...> wrote:

> Hi Mancie,

>

> The Ctoma usually starts behind the eardrum and

> spreads from there. It is

> VERY common for it to end up in the mastoid region.

> As for not knowing how

> big it is, the doctor doesn't usually know untill he

> gets physically inside

> your ear. CT's & MRI's don't show the whole

> picture. For more information

> check out www.cholesteatoma.org. There are close to

> 500 case studies posted

> and lots of other information as well.

>

> Keep us informed. We do care.

>

> God bless, Jane

>

>

> >From: " mance8936 " <mance8936@...>

> >Reply-cholesteatoma

> >cholesteatoma

> >Subject: New Member

> >Date: Thu, 14 Mar 2002 22:25:00 -0000

> >

> >Hi everyone,

> >

> >My name is Mancie. I am 24 years old and was

> diagnosed with a

> >cholesteatoma last month. I had a CT Scan and all

> the tests done. I

> >will have surgery the end of this month. I have

> been searching all

> >over the internet for more info on this and arrived

> here. I realize

> >now that I know nothing on my condition, I don't

> know how big it is

> >or exactly where it is, I just know it is in the

> mastoid bone. Is

> >that where it normally is?

> >

> >Thanks for any help,

> >Mancie

> >

>

>

>

_________________________________________________________________

> Chat with friends online, try MSN Messenger:

> http://messenger.msn.com

>

>

__________________________________________________

[Guest guest]

Hi to all. My name is Jimmy and I'm from Tennessee. I just found

out yesterday that I had c-toma. The doctor has already set up a cat

scan for me on December 5th to see how much damage has been done. I

guess I'm going to get a second opinion. Does anyone know of any

reliable doctors in West Tennessee. This is the first time I have

ever been to the doctors office in West TN, because I am not

orginially from here. I'm from East TN instead. Anyway, I'm very

nervous about this whole ordeal. I am married and have a 13 month

old girl named Katlynn. Just decided to drop a line to say hi and

introduce myself to all. Any feedback on doctors and any comments

are greatly appreciated. Thanks!

Jimmy

[Guest guest]

Hi Jimmy,

Welcome to the group. This is a great source for information. I am also new here and have learned alot in a very short time. Everyone seems more than willing to share their experiences and point you in the right direction. Im not sure if my son has a c-toma or not, havent had our consult since the ct scan and hearing test yet, but Im much more prepared if he does. Good luck to you, and check out the links and such on this site.It will help you understand what your dealing with..

~*~Renonda~*~

[Guest guest]

Hi Pete, The test you are talking about is the prom stim and not all centers

do that tests espescially if yor are using hearing aids. The hearing aids

show the presence of a working auditory nerve. I did have Prom Stim done as

one of my ears was unaided for 13 years. It is uncomfortable but very short

in duration. I also can't stand to have anyone mess with my ear and sweat

and shake just having my ears checked! However I took a deep breath and

went for it and have experienced many wonderful years of the most beautiful

sounds that have put me back in touch with life around me chasing away all

of the isolation that surrounded me forr so many years! Cheers, Ruth

New Member

My name is Pete. I am 55 years old and my hearing has steadily

decreased since age 7. I now wear strong bilateral hearing aids but

they are no longer very useful in understanding speech. I am

considering the probabilty that eventually I will get no further

benefit from hearing aids. As of now, the only tones and freqs I do

hear are way at the bottom of the audiogram.

I'm considering a CI operation but haven't begun the process mainly

because I'm scared to death that the operation will fail and I'll

lose whatever residual hearing is left. Plus, I'm not sure I want to

undergo that one test where they stick a needle in your eardrum. I

don't like my ears messed-with. I can barely stand it when I have

impacted cerenum removed with a currette. Way too pianful!

I'm gonna go into lurk mode now and get to know how things work in

this group. Maybe I'll learn enough to get my courage up.

p