Re: deciding whether or not to have surgery

[Guest guest]

Hi,

I'm just gonna get right to it. You do need to find another doctor. The only

known treatment for cholesteatoma is surgery and it will continue to get worse

without it. In my opinion, there is no choice. If you have c-toma, you have to

have surgery.

I know this is not what you wanted to hear probably, but with this disease there

aren't any other options.

Michele Group Moderator

>

> I was diagnosed with a cholesteotoma in my right ear a few months ago, after

one misdiagnosis of otoschlerosis. To say the least I am having a hard time

trusting doctors, and I just had a horrible experience with a surgeon. No one

will help me decide if this surgery is truely necessary. The surgeon said it

made no difference to him if I had this surgery or not! Does anyone have

experience with a good surgeon in the Cincinnati, Ohio area? I am very

frustrated, anxious, scared, you name it!

>

[Guest guest]

Hi there,

I just had surgery march 12 because of cholesteatoma. And I let it go so long

before having surgery, that it ate through the bone that seperates the ear from

the brain and was found in my brain. Because of the bone being gone, my brain

dropped because that's the part that holds it up, and some of the brain died.

Not alot, but this is why you absolutely need the surgery. I'm not trying to

scare you, I just don't want you to make the same mistake I did. The surgery

really isn't all that bad. But you let it go on too long, you'll end up with

brain surgery like me. But you do need a new doctor if he doesn't care whether

you have it or not. Good luck.

> >

> > I was diagnosed with a cholesteotoma in my right ear a few months ago, after

one misdiagnosis of otoschlerosis. To say the least I am having a hard time

trusting doctors, and I just had a horrible experience with a surgeon. No one

will help me decide if this surgery is truely necessary. The surgeon said it

made no difference to him if I had this surgery or not! Does anyone have

experience with a good surgeon in the Cincinnati, Ohio area? I am very

frustrated, anxious, scared, you name it!

> >

>

[Guest guest]

I am sitting beside my 7 yr old who had his second surgery at 9 today. You have to have the surgery but you need a good doctor, need to make sure you have a c-toma. It never stops growing, it will eat up your hearing bones and into your brain cavity. I wish I knew of a good doctor in your area. We have some good ones in North Carolina. Ours doesn't have a great outgoing personality but he is good at what he does. Good luck finding a good doctor, you will be in our prayers.

From: seftonmichelle <seftonmichelle@...>Subject: deciding whether or not to have surgerycholesteatoma Date: Monday, April 27, 2009, 4:25 PM

I was diagnosed with a cholesteotoma in my right ear a few months ago, after one misdiagnosis of otoschlerosis. To say the least I am having a hard time trusting doctors, and I just had a horrible experience with a surgeon. No one will help me decide if this surgery is truely necessary. The surgeon said it made no difference to him if I had this surgery or not! Does anyone have experience with a good surgeon in the Cincinnati, Ohio area? I am very frustrated, anxious, scared, you name it!

[Guest guest]

Is the doctor who stated that it makes no difference if one gets operated fro C-Toma?, an ear surgery trained Otologist?

Then how does it enters the skull, it can not happen in a day.

Arun 

On 4/28/09, seftonmichelle <seftonmichelle@...> wrote:

I was diagnosed with a cholesteotoma in my right ear a few months ago, after one misdiagnosis of otoschlerosis. To say the least I am having a hard time trusting doctors, and I just had a horrible experience with a surgeon. No one will help me decide if this surgery is truely necessary. The surgeon said it made no difference to him if I had this surgery or not! Does anyone have experience with a good surgeon in the Cincinnati, Ohio area? I am very frustrated, anxious, scared, you name it!

[Guest guest]

C-toma if left untreated can kill you. It would take some time for this but it can happen. The only way to cure c-toma is by surgery, so surgery is needed. If you need to get a 2nd opinion let us know here you live and someone will likely refer you to someone they have seen and have confidence in.

Tom Hansen

From: Arun Gupta <drarunjind@...>cholesteatoma Sent: Tuesday, April 28, 2009 8:52:39 AMSubject: Re: deciding whether or not to have surgery

Is the doctor who stated that it makes no difference if one gets operated fro C-Toma?, an ear surgery trained Otologist?

Then how does it enters the skull, it can not happen in a day.

Arun

On 4/28/09, seftonmichelle <seftonmichelle> wrote:

I was diagnosed with a cholesteotoma in my right ear a few months ago, after one misdiagnosis of otoschlerosis. To say the least I am having a hard time trusting doctors, and I just had a horrible experience with a surgeon. No one will help me decide if this surgery is truely necessary. The surgeon said it made no difference to him if I had this surgery or not! Does anyone have experience with a good surgeon in the Cincinnati, Ohio area? I am very frustrated, anxious, scared, you name it!

[Guest guest]

The surgeon I went to see is Board Certified in Otolaryngology, and Neurotology-

I'm sure he's a great surgeon. But his bedside manner stunk!!! What he said

was that it didn't matter to HIM if I chose to have surgery or not. I think

maybe I stepped on his toes for asking questions (???) but I was looking for a

little compassion and guidance as to what I should do, and he didn't want to do

that. He continued to say that he wouldn't do surgery on me now because I was

too anxious and indecisive.

The problem is, that my hearing is not that bad in the ear with the

cholesteatoma, and surgery will most likely make my hearing go down. Does

anyone have any experience with a surgeon in the Cincinnati, Ohio area??

>

>

>

> I was diagnosed with a cholesteotoma in my right ear a few months ago, after

one misdiagnosis of otoschlerosis. To say the least I am having a hard time

trusting doctors, and I just had a horrible experience with a surgeon. No one

will help me decide if this surgery is truely necessary. The surgeon said it

made no difference to him if I had this surgery or not! Does anyone have

experience with a good surgeon in the Cincinnati, Ohio area? I am very

frustrated, anxious, scared, you name it!

>

[Guest guest]

Hi ,

The surgeon you spoke with is clearly an a$$hole! However, you really need to get the Cholesteatoma removed because the longer you leave it, the more damage it will cause.

The key is to find the best surgeon you possibly can (think someone in the top 5% of their profession), and one that will answer your questions and not treat you like an imbecile. Look for a neuro-otologist, and be prepared to travel to find the best surgeon you can.

Good luck, and don't let bad doctors put you off getting this fixed. There are good ear doctors out there, keep looking.

From: seftonmichelle <seftonmichelle@...>Subject: Re: deciding whether or not to have surgerycholesteatoma Date: Tuesday, April 28, 2009, 1:29 PM

The surgeon I went to see is Board Certified in Otolaryngology, and Neurotology- I'm sure he's a great surgeon. But his bedside manner stunk!!! What he said was that it didn't matter to HIM if I chose to have surgery or not. I think maybe I stepped on his toes for asking questions (???) but I was looking for a little compassion and guidance as to what I should do, and he didn't want to do that. He continued to say that he wouldn't do surgery on me now because I was too anxious and indecisive.The problem is, that my hearing is not that bad in the ear with the cholesteatoma, and surgery will most likely make my hearing go down. Does anyone have any experience with a surgeon in the Cincinnati, Ohio area?? > > > > I was diagnosed with a cholesteotoma in my right ear a few months ago, after one misdiagnosis of otoschlerosis. To say the least I am having a hard time trusting doctors, and I just had a horrible experience with a surgeon. No one will help me decide if this surgery is truely necessary. The surgeon said it made no difference to him if I had this surgery or not! Does anyone have experience with a good surgeon in the Cincinnati, Ohio area? I am very frustrated, anxious, scared, you name it!>

[Guest guest]

Would you rather have hearing or would you rather have life? Do not make your choice based on if you will have hearing or not. Why do you say his bedside manner stunk? Because your not listening to what he is saying? Or because you don't want to give up our hearing? I have had the Modified Radical, it's not as bad your making it out to be condisering it will likely get rid of the C-toma for good. Once again, the only way to get with of this stuff is Surgery. I do urge you to get a 2nd opinion, I bet you will hear the other doc say the same thing.........

Tom Hansen

From: seftonmichelle <seftonmichelle@...>cholesteatoma Sent: Tuesday, April 28, 2009 12:29:52 PMSubject: Re: deciding whether or not to have surgery

The surgeon I went to see is Board Certified in Otolaryngology, and Neurotology- I'm sure he's a great surgeon. But his bedside manner stunk!!! What he said was that it didn't matter to HIM if I chose to have surgery or not. I think maybe I stepped on his toes for asking questions (???) but I was looking for a little compassion and guidance as to what I should do, and he didn't want to do that. He continued to say that he wouldn't do surgery on me now because I was too anxious and indecisive.The problem is, that my hearing is not that bad in the ear with the cholesteatoma, and surgery will most likely make my hearing go down. Does anyone have any experience with a surgeon in the Cincinnati, Ohio area?? > > > > I was diagnosed with a cholesteotoma in my right ear a few months ago, after one misdiagnosis of otoschlerosis. To say the least I am having a hard time trusting doctors, and I just had a horrible experience with a surgeon. No one will help me decide if this surgery is truely necessary. The surgeon said it made no difference to him if I had this surgery or not! Does anyone have experience with a good surgeon in the Cincinnati, Ohio area? I am very frustrated, anxious, scared, you name it!>

[Guest guest]

I only saw two doctors in the Cincinnati area that listed neurotology as

their subspecialty. They are below with two addresses for a Dr. Myles

Pensak. Other Ohio neurotologists are listed at the bottom of this

message. This information is from the following web site:

http://www.entnet.org/

You might also consider nearby places in Kentucky.

I can only echo all of the feedback that you've gotten from the others.

Surgery is your only option. Get the lousy thing taken out so that it

stops causing damage.

I was curious ... have any of you read " The white earth " by

McGahan? I had pointed it out a couple years back as a work of fiction

whose main character has cholesteatoma.

- Matt

The Data from the database:

Name: Myles L Pensak, MD

Address : Dept of OTO

231 Albert Sabin Way ML #0528

Cincinnati, OH 45267-0528

Business Phone: (513) 558-5143

Board Certification: ABOto

Member Since: 10/01/1983

Subspecialties: Neurotology, Otology

Education: NY Univ Med,Otology Group Nashville Tennessee,Yale-New

Haven Medical Center

Website: http://www.ent.uc.edu

Name: Myles L Pensak, MD

Address : Univ ENT Specialists

222 Piedmont Ave Ste 5200

Cincinnati, OH 45219-4222

Business Phone: (513) 558-5143

Board Certification: ABOto

Member Since: 10/01/1983

Subspecialties: Neurotology, Otology

Education: NY Univ Med,Otology Group Nashville Tennessee,Yale-New

Haven Medical Center

Website: http://www.ent.uc.edu

Name: Ravi N Samy, MD

Address : Dept of OTO - HNS

231 Albert B Sabin Way ML 0528

Cincinnati, OH 45267

Business Phone: (513) 558-3901

Board Certification: ABOto

Member Since: 09/18/1996

Subspecialties: Maxillofacial Surgery, Neurotology, Otology,

Pediatric Otolaryngology

Education: Duke Univ,Univ of Iowa,Stanford University

Website: http://www.ent.uc.edu

Name City

E. Dodson, MD Columbus, OH 43210-1240

Mohamed A Hamid, MD PhD EE Lyndhurst, OH 44124

Cliff A. Megerian, MD Cleveland, OH 44106-1736

Myles L Pensak, MD Cincinnati, OH 45267-0528

Myles L Pensak, MD Cincinnati, OH 45219-4222

M Ryzenman, MD New Albany, OH 43054-0606

M Ryzenman, MD Westerville, OH 43082-6077

Ravi N Samy, MD Cincinnati, OH 45267

S. Toma, MD Toledo, OH 43606-1171

S. Toma, MD Oregon, OH 43616-8203

D Bradley Welling, III, MD PhD Columbus, OH 43210-1240

Judith A White, MD PhD Cleveland, OH 44195-0001

Tom Hansen wrote:

>

>

> Would you rather have hearing or would you rather have life? Do not

> make your choice based on if you will have hearing or not. Why do you

> say his bedside manner stunk? Because your not listening to what

> he is saying? Or because you don't want to give up our hearing? I

> have had the Modified Radical, it's not as bad your making it out

> to be condisering it will likely get rid of the C-toma for good. Once

> again, the only way to get with of this stuff is Surgery. I do urge

> you to get a 2nd opinion, I bet you will hear the other doc say the

> same thing.........

>

> Tom Hansen

>

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

> *From:* seftonmichelle <seftonmichelle@...>

> *To:* cholesteatoma

> *Sent:* Tuesday, April 28, 2009 12:29:52 PM

> *Subject:* Re: deciding whether or not to have surgery

>

> The surgeon I went to see is Board Certified in Otolaryngology, and

> Neurotology- I'm sure he's a great surgeon. But his bedside manner

> stunk!!! What he said was that it didn't matter to HIM if I chose to

> have surgery or not. I think maybe I stepped on his toes for asking

> questions (???) but I was looking for a little compassion and guidance

> as to what I should do, and he didn't want to do that. He continued to

> say that he wouldn't do surgery on me now because I was too anxious

> and indecisive.

>

> The problem is, that my hearing is not that bad in the ear with the

> cholesteatoma, and surgery will most likely make my hearing go down.

> Does anyone have any experience with a surgeon in the Cincinnati, Ohio

> area??

>

>

>

>

> >

> >

> >

> > I was diagnosed with a cholesteotoma in my right ear a few months

> ago, after one misdiagnosis of otoschlerosis. To say the least I am

> having a hard time trusting doctors, and I just had a horrible

> experience with a surgeon. No one will help me decide if this surgery

> is truely necessary. The surgeon said it made no difference to him if

> I had this surgery or not! Does anyone have experience with a good

> surgeon in the Cincinnati, Ohio area? I am very frustrated, anxious,

> scared, you name it!

> >

>

>

>

--

[Guest guest]

Matt,

Thank you for the information!

--- In cholesteatoma , "