RE: Introduction and story

June 29, 2005

Hey at this point, I am somewhat confident in the care I am

receiving. If my ear does not become clean or stable soon, I may

seek another opinion. They are not " otologists " as far as I know,

although one of the two specialists I referred to earlier worked

only with ears, I was told.

I would love to hear statistics on how common/rare cholesteatoma

is. One of my current doctors said that he saw about 10 cases of it

a year, IIRC. One I saw in London he saw 30 or 40. This guy in

London is allegedly " the best in Ontario " , and I was originally

going to stick with him, but he was away during my emergency.

Anyhow, thanks for the kind words

> Sorry this has been such a mess for you. I HAVE had a somewhat

positive

> (as good as it can be) experience. 3 surgeries, all Canal Wall

Up. 18

> months time span. I now have 2 clean ears with 100% hearing in

one and

> 90% in the other. No water restrictions, no cleanings, no c-

toma. I

> owe it all to my fantastic doctor. Just wanted to let you know

that

> there are some success stories out there, but you probably correct

in

> stating that they are not highly publicized on this site.

>

> I would suggest seeing an otologist or neurotologist (sp?). They

are

> more specialized than ENT. The specialize in ears only and deal

with

> c-toma's on a daily basis. My ENT immediatly referred me to one

and in

> hindsight I am greatful. At the time, if the ENT told me he

wanted to

> do the surgury I would have been fine with it. After becoming more

> educated I now know that this is a rare condition. Even an ENT

does not

> see it that often. Perhaps the docs. you were working with were

> otologists, but you didn't mention it specifically.

>

> Jeff

>

> _____

>

> From: cholesteatoma

> [mailto:cholesteatoma ] On Behalf Of

kookieiswonderful

> Sent: Wednesday, June 29, 2005 12:32 AM

> cholesteatoma

> Subject: Introduction and story

>

> Well, I've never actually met or spoken to anybody who has had a

> cholesteatoma before, so this is new. I must say that reading

> various stories on the web it sounds like the majority of patients

> posting have negative stories. Of course, part of this is

probably

> because those with negative stories are more likely to seek

support

> then those who have had favorable outcomes. Anyhow, here is my

> story. It is rather long as it involves three surgeries, and ends

> with my appointment this week.

>

> I'm from Ontario, Canada. I have had infections in my ear since I

> was a child. Tubes were placed in three or four times but they

> never lasted, and the fluid would come again. From the time I was

> about 11 or 12 I seem to remember not hearing very at well out of

my

> right ear. Especially poorly compared to how I had been hearing.

I

> do seem to remember it spontaneously getting better during the

> summer one year. I can't remember really thinking much of it or

> what was going through my head at the time. But anyhow, my

hearing

> got worse again in that year and tubes were placed in again (and

> again after that) as fluid behind the ears was the diagnosis. My

> doctor said my ear was especially a pain in the butt (in a

friendly

> way, of course) because tubes never stayed in. He considered

trying

> different tubes. But I had told him that tubes did not make a

> difference in my hearing. A test confirmed this the next time

tubes

> were put in. He said that he thought I may have had

cholesteatoma.

> A cat scan confirmed this. I was scheduled for surgery. I was

> about 19 (I'm 22 now). When he performed the surgery, he said he

> was surprised by how far the cholesteatoma had spread, and that he

> had to remove the malleus and incus bones, and that he had left

the

> stapes and did something or other to my little remaining ear

drum.

> I remember that the surgery took about six hours, and that my arm

> actually hurt worse than my ear after the surgery, due to the

blood

> pressure cuff. I can recall after the surgery that food tasted

> different. This was not permanent, as it turns out.

> Because the main goal of cholesteatoma surgery, I was told, was

> to gain a safe hearing environment, my surgery was deemed a

success

> because my hearing environment was now clean. It wasn't really to

> remain that way however. Basically, my ENT surgeon did not have

his

> own microscope and suction in his office. My ear needed a lot of

> cleaning and he was scheduling appoints for two weeks after he

> deemed I need cleaning, meaning that by the time we met for the

that

> my ear canal was closing. He did not know what was happening or

> why. At the end of one appointment where couldn't actually clean

my

> ear because of this closing, he said he was going to send me to

> another specialist. I am thankful that he was humble enough to

> admit that he didn't have a clue what was going on, although I

think

> he was late in doing so. I saw another specialist that he

referred

> me to, as well as another one I had asked my GP to set me up with

a

> month earlier when I decided I was frustrated with him not knowing

> what was going on. Both of them immediately recognized the

problem

> as scar tissue developing and closing over the canal. They seemed

> to have a lot more knowledge of this area than my old specialist.

I

> chose to stick with the specialist that my GP referred me to as he

> seemed to have the most experience with the problem I had.

> Life had other plans. Both of these specialists had decided

that

> surgery could wait a few months. If you can recall, my former ENT

> surgeon had not been able to clean my ear out the last time he had

> seen me. For some reason it didn't occur to me or any of the two

> specialists that what needed to be cleaned remained in my ear and

> was causing problems. I'm not sure why as it seems so obvious

now,

> but what happened happened. Basically, about a week or two after

> seeing these specialists, my actual ear (not the inner ear or the

> canal which was closed but the ear) began to become quite

painful.

> According to my parents the one side of my face was also swollen.

> The ENT surgeon I had chosen to remain with was on vacation at

this

> time so we could not see him. I felt a bit weird about going to

the

> one I had not chosen, and my old ENT surgeon was obviously not

going

> to be too useful. So I went to the walk-in in a hosptial in a

nearby

> city.

> There I was diagnosed as having an abcess in my ear and

cellulitis

> of the face, as the infection had spread. I remember them putting

> me on percocet, which is the most wonderful drug. I can remember

> sleeping in the psych room in the emergency section, the night

> before major surgery, and yet I slept the most pleasant sleep I

had

> ever had.

> The surgery removed my abcess, and again this surgery was deemed

> successful. This surgery, by the way, was performed by a doctor

who

> had probably only 2 or 3 years of ENT experience and looked like

he

> was 25 (obviously he can't be that young, but he is no more than

34

> or so). But he is excellent and knowledgable, which goes to show

> that age doesn't necessarily mean experience.

> Cut forward another year and I needed another surgery to

perform

> a meatoplasty because the scar tissue was growing again. This

young

> surgeon of my was very up frong about the fact that he felt

another

> doctor in the clinic he worked in would do a better job than he

> would, so he booked an appointment. A doctor who is honest and

> direct about his or her abilities is worth a lot, let me tell you.

> Sorry for the rambling, I will get to the point Basically,

> after this last surgery, my ear has been good, but it needs a lot

of

> cleaning and has hadrecurring fungal infections. Up until about

> last march, I was seeing any of the three doctors in the clinic

> (though mostly the one who performed the most recent surgery),

> depending on who was available, on a weekly or sometimes biweekly

> basis. I have since been moved to a month apart in cleaning. My

> ear makes a big mess apparently They haven't really seen one

so

> productive. I'm amazed at what they pull out.

> The end of the story so far is that today I had a discussion

with

> my current ENT (I decided it was best to see one of them

> consistently) doctor about reconstruction. She said that my

hearing

> was surprisingly good in my ear, only about a 15-20 db conductive

> hearing loss. so that's good. It is unfortunate that my ear is

so

> productive because it means a hearing aid would get plugged and

> maybe make things worse, but maybe one day.....

>

> Thanks for listening.

>

June 30, 2005

mourad mazouz <algerianbrokers@...> a écrit :

Jeff Schwartzkopf <jeff.schwartzkopf@...> a écrit :

,

Sorry this has been such a mess for you. I HAVE had a somewhat positive (as good as it can be) experience. 3 surgeries, all Canal Wall Up. 18 months time span. I now have 2 clean ears with 100% hearing in one and 90% in the other. No water restrictions, no cleanings, no c-toma. I owe it all to my fantastic doctor. Just wanted to let you know that there are some success stories out there, but you probably correct in stating that they are not highly publicized on this site.

I would suggest seeing an otologist or neurotologist (sp?). They are more specialized than ENT. The specialize in ears only and deal with c-toma's on a daily basis. My ENT immediatly referred me to one and in hindsight I am greatful. At the time, if the ENT told me he wanted to do the surgury I would have been fine with it. After becoming more educated I now know that this is a rare condition. Even an ENT does not see it that often. Perhaps the docs. you were working with were otologists, but you didn't mention it specifically.

Jeff

dear JEFF

WOULD YOU BE KIND TO INFORM ABOUT ADRESS OF YOU OTOLOGIST.THEN I CAN SEND HIM MY NEPHWEW FOR CONSULTATION.

YOUR HELP WILL BE WELCOMED

KINDLY

MOURAD

dear JEFF

WOULD YOU BE KIND TO TELL US HOW THIS HAPPEN WITH MORE DETAILS.I HAVE GOT NEPHEW 13 YEARS OLD.HE HAS BEEN ON HIS SECOND SURGERY IN RIGHT EAR NOW I THINK IT IS GOING WELL BUT HE WILL DO SURGERY FOR THE LEFT EAR IN NEXT SEPTEMBER .ANY ADVICE FOR HIM ???

REGARDS

MOURAD

From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of kookieiswonderfulSent: Wednesday, June 29, 2005 12:32 AMcholesteatoma Subject: Introduction and story

Well, I've never actually met or spoken to anybody who has had a cholesteatoma before, so this is new. I must say that reading various stories on the web it sounds like the majority of patients posting have negative stories. Of course, part of this is probably because those with negative stories are more likely to seek support then those who have had favorable outcomes. Anyhow, here is my story. It is rather long as it involves three surgeries, and ends with my appointment this week.I'm from Ontario, Canada. I have had infections in my ear since I was a child. Tubes were placed in three or four times but they never lasted, and the fluid would come again. From the time I was about 11 or 12 I seem to remember not hearing very at well out of my right ear. Especially poorly compared to how I had been hearing. I do seem to remember it spontaneously getting better

during the summer one year. I can't remember really thinking much of it or what was going through my head at the time. But anyhow, my hearing got worse again in that year and tubes were placed in again (and again after that) as fluid behind the ears was the diagnosis. My doctor said my ear was especially a pain in the butt (in a friendly way, of course) because tubes never stayed in. He considered trying different tubes. But I had told him that tubes did not make a difference in my hearing. A test confirmed this the next time tubes were put in. He said that he thought I may have had cholesteatoma. A cat scan confirmed this. I was scheduled for surgery. I was about 19 (I'm 22 now). When he performed the surgery, he said he was surprised by how far the cholesteatoma had spread, and that he had to remove the malleus and incus bones, and that he had left the stapes and did

something or other to my little remaining ear drum. I remember that the surgery took about six hours, and that my arm actually hurt worse than my ear after the surgery, due to the blood pressure cuff. I can recall after the surgery that food tasted different. This was not permanent, as it turns out. Because the main goal of cholesteatoma surgery, I was told, was to gain a safe hearing environment, my surgery was deemed a success because my hearing environment was now clean. It wasn't really to remain that way however. Basically, my ENT surgeon did not have his own microscope and suction in his office. My ear needed a lot of cleaning and he was scheduling appoints for two weeks after he deemed I need cleaning, meaning that by the time we met for the next two weeks, my ear was pretty messy. On top of that it appeared that my ear canal was closing. He did not know what was

happening or why. At the end of one appointment where couldn't actually clean my ear because of this closing, he said he was going to send me to another specialist. I am thankful that he was humble enough to admit that he didn't have a clue what was going on, although I think he was late in doing so. I saw another specialist that he referred me to, as well as another one I had asked my GP to set me up with a month earlier when I decided I was frustrated with him not knowing what was going on. Both of them immediately recognized the problem as scar tissue developing and closing over the canal. They seemed to have a lot more knowledge of this area than my old specialist. I chose to stick with the specialist that my GP referred me to as he seemed to have the most experience with the problem I had. Life had other plans. Both of these specialists had decided that surgery could

wait a few months. If you can recall, my former ENT surgeon had not been able to clean my ear out the last time he had seen me. For some reason it didn't occur to me or any of the two specialists that what needed to be cleaned remained in my ear and was causing problems. I'm not sure why as it seems so obvious now, but what happened happened. Basically, about a week or two after seeing these specialists, my actual ear (not the inner ear or the canal which was closed but the ear) began to become quite painful. According to my parents the one side of my face was also swollen. The ENT surgeon I had chosen to remain with was on vacation at this time so we could not see him. I felt a bit weird about going to the one I had not chosen, and my old ENT surgeon was obviously not going to be too useful. So I went to the walk-in in a hosptial in a nearby city. There I was diagnosed as having

an abcess in my ear and cellulitis of the face, as the infection had spread. I remember them putting me on percocet, which is the most wonderful drug. I can remember sleeping in the psych room in the emergency section, the night before major surgery, and yet I slept the most pleasant sleep I had ever had. The surgery removed my abcess, and again this surgery was deemed successful. This surgery, by the way, was performed by a doctor who had probably only 2 or 3 years of ENT experience and looked like he was 25 (obviously he can't be that young, but he is no more than 34 or so). But he is excellent and knowledgable, which goes to show that age doesn't necessarily mean experience. Cut forward another year and I needed another surgery to perform a meatoplasty because the scar tissue was growing again. This young surgeon of my was very up frong about the fact that he felt another

doctor in the clinic he worked in would do a better job than he would, so he booked an appointment. A doctor who is honest and direct about his or her abilities is worth a lot, let me tell you. Sorry for the rambling, I will get to the point Basically, after this last surgery, my ear has been good, but it needs a lot of cleaning and has hadrecurring fungal infections. Up until about last march, I was seeing any of the three doctors in the clinic (though mostly the one who performed the most recent surgery), depending on who was available, on a weekly or sometimes biweekly basis. I have since been moved to a month apart in cleaning. My ear makes a big mess apparently They haven't really seen one so productive. I'm amazed at what they pull out. The end of the story so far is that today I had a discussion with my current ENT (I decided it was best to see one of

them consistently) doctor about reconstruction. She said that my hearing was surprisingly good in my ear, only about a 15-20 db conductive hearing loss. so that's good. It is unfortunate that my ear is so productive because it means a hearing aid would get plugged and maybe make things worse, but maybe one day.....Thanks for listening.

June 30, 2005

Dr. Luetje

Otologic Center

Kansas City, MO 64111

816-531-7373

I guess the only advice I can offer it find a good Doctor. Based on the stories I have heard on this group, I am extreemly lucky to have happened upon this Doctor. His bedside manner is fantastic and I only missed 2 days of work for each surgery. No complications after surgery. On my first visit he spent about 3 hrs with me. This is unheard of for any doc I have ever been around.

Jeff

From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of mourad mazouzSent: Thursday, June 30, 2005 4:33 AMcholesteatoma Subject: RE: Introduction and story

mourad mazouz <algerianbrokers@...> a écrit :

Jeff Schwartzkopf <jeff.schwartzkopf@...> a écrit :

,

Sorry this has been such a mess for you. I HAVE had a somewhat positive (as good as it can be) experience. 3 surgeries, all Canal Wall Up. 18 months time span. I now have 2 clean ears with 100% hearing in one and 90% in the other. No water restrictions, no cleanings, no c-toma. I owe it all to my fantastic doctor. Just wanted to let you know that there are some success stories out there, but you probably correct in stating that they are not highly publicized on this site.

I would suggest seeing an otologist or neurotologist (sp?). They are more specialized than ENT. The specialize in ears only and deal with c-toma's on a daily basis. My ENT immediatly referred me to one and in hindsight I am greatful. At the time, if the ENT told me he wanted to do the surgury I would have been fine with it. After becoming more educated I now know that this is a rare condition. Even an ENT does not see it that often. Perhaps the docs. you were working with were otologists, but you didn't mention it specifically.

Jeff

dear JEFF

WOULD YOU BE KIND TO INFORM ABOUT ADRESS OF YOU OTOLOGIST.THEN I CAN SEND HIM MY NEPHWEW FOR CONSULTATION.

YOUR HELP WILL BE WELCOMED

KINDLY

MOURAD

dear JEFF

WOULD YOU BE KIND TO TELL US HOW THIS HAPPEN WITH MORE DETAILS.I HAVE GOT NEPHEW 13 YEARS OLD.HE HAS BEEN ON HIS SECOND SURGERY IN RIGHT EAR NOW I THINK IT IS GOING WELL BUT HE WILL DO SURGERY FOR THE LEFT EAR IN NEXT SEPTEMBER .ANY ADVICE FOR HIM ???

REGARDS

MOURAD

From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of kookieiswonderfulSent: Wednesday, June 29, 2005 12:32 AMcholesteatoma Subject: Introduction and story

Well, I've never actually met or spoken to anybody who has had a cholesteatoma before, so this is new. I must say that reading various stories on the web it sounds like the majority of patients posting have negative stories. Of course, part of this is probably because those with negative stories are more likely to seek support then those who have had favorable outcomes. Anyhow, here is my story. It is rather long as it involves three surgeries, and ends with my appointment this week.I'm from Ontario, Canada. I have had infections in my ear since I was a child. Tubes were placed in three or four times but they never lasted, and the fluid would come again. From the time I was about 11 or 12 I seem to remember not hearing very at well out of my right ear. Especially poorly compared to how I had been hearing. I do seem to remember it spontaneously getting better during the summer one year. I can't remember really thinking much of it or what was going through my head at the time. But anyhow, my hearing got worse again in that year and tubes were placed in again (and again after that) as fluid behind the ears was the diagnosis. My doctor said my ear was especially a pain in the butt (in a friendly way, of course) because tubes never stayed in. He considered trying different tubes. But I had told him that tubes did not make a difference in my hearing. A test confirmed this the next time tubes were put in. He said that he thought I may have had cholesteatoma. A cat scan confirmed this. I was scheduled for surgery. I was about 19 (I'm 22 now). When he performed the surgery, he said he was surprised by how far the cholesteatoma had spread, and that he had to remove the malleus and incus bones, and that he had left the stapes and did something or other to my little remaining ear drum. I remember that the surgery took about six hours, and that my arm actually hurt worse than my ear after the surgery, due to the blood pressure cuff. I can recall after the surgery that food tasted different. This was not permanent, as it turns out. Because the main goal of cholesteatoma surgery, I was told, was to gain a safe hearing environment, my surgery was deemed a success because my hearing environment was now clean. It wasn't really to remain that way however. Basically, my ENT surgeon did not have his own microscope and suction in his office. My ear needed a lot of cleaning and he was scheduling appoints for two weeks after he deemed I need cleaning, meaning that by the time we met for the next two weeks, my ear was pretty messy. On top of that it appeared that my ear canal was closing. He did not know what was happening or why. At the end of one appointment where couldn't actually clean my ear because of this closing, he said he was going to send me to another specialist. I am thankful that he was humble enough to admit that he didn't have a clue what was going on, although I think he was late in doing so. I saw another specialist that he referred me to, as well as another one I had asked my GP to set me up with a month earlier when I decided I was frustrated with him not knowing what was going on. Both of them immediately recognized the problem as scar tissue developing and closing over the canal. They seemed to have a lot more knowledge of this area than my old specialist. I chose to stick with the specialist that my GP referred me to as he seemed to have the most experience with the problem I had. Life had other plans. Both of these specialists had decided that surgery could wait a few months. If you can recall, my former ENT surgeon had not been able to clean my ear out the last time he had seen me. For some reason it didn't occur to me or any of the two specialists that what needed to be cleaned remained in my ear and was causing problems. I'm not sure why as it seems so obvious now, but what happened happened. Basically, about a week or two after seeing these specialists, my actual ear (not the inner ear or the canal which was closed but the ear) began to become quite painful. According to my parents the one side of my face was also swollen. The ENT surgeon I had chosen to remain with was on vacation at this time so we could not see him. I felt a bit weird about going to the one I had not chosen, and my old ENT surgeon was obviously not going to be too useful. So I went to the walk-in in a hosptial in a nearby city. There I was diagnosed as having an abcess in my ear and cellulitis of the face, as the infection had spread. I remember them putting me on percocet, which is the most wonderful drug. I can remember sleeping in the psych room in the emergency section, the night before major surgery, and yet I slept the most pleasant sleep I had ever had. The surgery removed my abcess, and again this surgery was deemed successful. This surgery, by the way, was performed by a doctor who had probably only 2 or 3 years of ENT experience and looked like he was 25 (obviously he can't be that young, but he is no more than 34 or so). But he is excellent and knowledgable, which goes to show that age doesn't necessarily mean experience. Cut forward another year and I needed another surgery to perform a meatoplasty because the scar tissue was growing again. This young surgeon of my was very up frong about the fact that he felt another doctor in the clinic he worked in would do a better job than he would, so he booked an appointment. A doctor who is honest and direct about his or her abilities is worth a lot, let me tell you. Sorry for the rambling, I will get to the point Basically, after this last surgery, my ear has been good, but it needs a lot of cleaning and has hadrecurring fungal infections. Up until about last march, I was seeing any of the three doctors in the clinic (though mostly the one who performed the most recent surgery), depending on who was available, on a weekly or sometimes biweekly basis. I have since been moved to a month apart in cleaning. My ear makes a big mess apparently They haven't really seen one so productive. I'm amazed at what they pull out. The end of the story so far is that today I had a discussion with my current ENT (I decided it was best to see one of them consistently) doctor about reconstruction. She said that my hearing was surprisingly good in my ear, only about a 15-20 db conductive hearing loss. so that's good. It is unfortunate that my ear is so productive because it means a hearing aid would get plugged and maybe make things worse, but maybe one day.....Thanks for listening.

June 30, 2005

A good Dr. in Phoenix Az

Dr. Mark Syms

Phoenix Ear CenterJeff Schwartzkopf <jeff.schwartzkopf@...> wrote: