Re: New Member Seeking Your Advice

Posted July 3, 2006 · July 3, 2006

Hi

I have a couple of questions for you:

1. I have to ask: are you expecting a 100% diagnosis prior to surgery, when this monster can only accurately be determined by surgery?

2. What do you mean by the "unpleasant ramifications of the canal wall down procedure"?

3. When all is said and done, wouldn't you just want shot of the darned tumour? Why wait for more damage to occur?

Not to put too fine a point on this, it can't be stressed enough tha tcholesteatoma can do serious damage over a period of time. You yourself said it's quite possibly gobbled up your incus already; how much more are you willing to sacrifice to the cholesteatoma before thinking that perhapsn now may be the time to allow the surgeons to take a look. I'm not one to go lightly in to any surgery, but nor am I one to play with things like cholesteatoma. Two medicos have opined to you that it what you have is likely cholesteatoma; the next step logically would be surgery to get rid of it. Your surgeon would then decide whilst you are under anaesthetic which procedure (canal wall up, or canal wall down) would be most suitable.

I personally feel there are no "unpleasant ramifications of the canal wall down procedure" and certainly no small cosmetics would play any part in any decision to remove a growth as monstrous as cholesteatoma can be.

I'm not medico, but I have to say that my advice to you would be to go ahead - have the surgery and soon! You have little or nothing to lose, compared to what you could lose if it is cholesteatoma and you have no surgery, or you delay it for no real reason.

Kazzy

New Member Seeking Your Advice

Hello Everyone,I've been a member of the group for a couple of months now, and I've been reading the digest a couple of times a week. However, this is my first time to post.This is my situation- I would like any and all feedback or advice anyone has. I have put off making a decision about what to do about my c-toma long enough, and I need to make a decision relatively soon. My situation is probably very similar to what many people have experienced- I am 24 years old, and when I was a child I had two sets of tubes put into my ears (the second set put in after the first set fell out) to try and ameliorate the ear infections I was having. Then, when I was about 9 years old I had to get tympanoplasty surgery (the ear drum skin graft surgery) on both ears, since my ear drums had not closed properly from the tubes.That's the past. I had no problems with my ears for a long time, about 13 years or so. Fast forward to last summer, summer of 2005, basically one year ago this month. I swim at the gym as usual but water gets in my left ear as I'm practicing flipping in the water (learned not to do that again!). That night, it becomes clear my left ear is infected, because it is painful, feels full, and is giving off pretty unpleasant discharge. I go to the doctor, an ENT I hadn't been to before here in Dallas, Texas where I live. We take care of the ear infection, and all is well, but I come back 6 months later (last December or so) for a check-up just so he can take a look, and he orders a CAT scan since he thinks that there could be a c-toma forming in my left ear. (However, how long it's been there seems to be something that is impossible to know, since I wasn't having ENT check-ups basically between the ages of 10 and 23). I get the CAT scan done, and it comes back and my doctor says that it is highly "suspicious" for a cholesteatoma. Thus far I have had 2 opinions, and neither doctor has said firmly and conclusively, "Yes, you have a cholesteatoma," but they both said that the odds are over 90% and recommend surgery asap. They said that the Incus (one of the three ossicles) was partly blocked from view in the CAT scan, so that it's possible that the c-toma has already gobbled it up. Sure enough, my hearing in my left ear is distinctly less than in my right, which we confirmed with a hearing test. (Thinking out loud, though, does that necessarily mean that the c-toma has worn away one of my hearing ossicles, or could that also be a function of a perforated ear drum in that ear- I don't know. Apparently my ear drum in my left ear didn't fully close up, even after the tympanoplasty surgery).I apologize for being so verbose, but the devil certainly seems to be in the details when discussing these issues...So here I am now with a choice to make. Both doctors I have seen, one of whom is a nationally recognized otologist who I trust to be "on top of his game", have said that I need to get c-toma surgery and that I should definitely do it sooner rather than later. However, I'm just not quite ready to sign on the dotted line yet. Here's why:1. It still isn't a certainty that I have c-toma, though of course it is certainly the most likely possibility. 2. The surgery almost seems to bring more problems with it than it does solutions. My doctor told me that my hearing could actually be LESS after the surgery, since they may have to remove my ossicles and put in prostheses. Additionally, I'm not thrilled about the idea of having 5 or more surgeries to remove this thing- the rate of recurrence in "canal wall up" procedures, as my doctor recommended we do (and which I agree with because of the unpleasant cosmetic ramifications of the "canal wall down" procedure) is EXTREMELY high (20-40% is what I was told). Last, and I've partly gotten over this, but the possibility of facial nerve damage that would actually make me lose the ability to move half of my face is very alarming to me. The fact that my doctor said that this has never happened to any of his patients or to any patient at the ENT clinic at University of Texas Southwestern Medical Center where his practice is is certainly reassuring, but still, isn't there always a first? Given the choice, I would choose hearing loss in 1 ear over lifelong facial paralysis any day.3. Another concern I have is just the general way that surgery is approached by many in the medical community these days. I'm no expert in this at all, but I have heard it said that upwards of 70% of surgical procedures these days are unnecessary. Additionally, they don't seem to be that successful. I take my own personal experience as a case in point: Clearly the doctors who recommended tubes be put in my ears (and the ears of millions of kids in my generation) were not well advised. That seems to be one of the big reasons why we have lists like this one! Additionally, the tympanoplasty I had done when I was 9 didn't apparently work all that well. Surgery just doesn't seem to be the magic bullet that it's promised to be. Today the doctors are telling me I need to get surgery to correct a problem, but doctors also told my mother when I was a child that I needed tubes in my ears to prevent future ear infections. Clearly, the risks of tubes outweighed the rewards, which is why I'm in the present situation. I'm not saying that surgery is a bad thing, only that it seems we need more thorough and conservative criteria before going down that road.I asked my doctor if it was a CERTAINTY that my c-toma was going to grow and become increasingly problematic as time goes on, or if there was a possibility that I could live with this c-toma, perhaps having reduced hearing in my left ear, but never really having problems in the future. I found his answer very vague. (Again, he is an expert in his field and I am lucky to have him as a doctor, but I believe I have to approach all of this carefully). He said that Yes, it is a certainty that my c-toma will grow and create some or all of the resultant problems with it (hearing loss, infection, potentially even worse). However, he said, the thing that is a variable is the question of WHEN. He said it could be two weeks, or it could be 10 years, he really had no way to know. To me, something feels off about this. How can something be a CERTAIN problem, but we then have NO idea about the time frame? This doesn't seem quite right to me.One specific question I have for everyone: Has anyone ever known of someone who HAS indeed lost their hearing, had ear problems, or had meningitis or anything like that as a result of c-toma? The posts I have read have been very helpful in discussing people's experiences with c-toma surgery, recurrence, etc., but doesn't it seem a little strange that, while we all know many people through this list who have had experience with c-toma surgery, we don't seem to have a whole lot of living examples of people saying, "I lost all the hearing in my ear due to c-toma, and I sure wish I had gotten the surgery," or anything like that. Perhaps they are out there, I'm just not coming across them. Any information in this area would be much appreciated, as I'm just trying to assess whether the fact I have a c-toma means FOR SURE that it is going to grow and create problems, or if it could be relatively dormant. Heck, for all I know I've been living with this thing for the last 14 years or so and didn't even know it. Or, it could have grown after my ear infection last year, and be growing more right now as I type. I apologize again for this verbose posting, but I wanted to give everyone my full situation and describe my thinking on it thus far. What I would like to ask anyone who was nice enough to read this email is what their advice would be that I do at this point. Also, I would love to know if there is anyone else in the same boat as me, who is concerned about their c-toma and is looking into the possibility of surgery, but who is as of yet unconvinced that it is the best step. If there is anyone who has been diagnosed with c-toma but decided NOT to do the surgery it would be good to hear from them and understand their reasons for doing so. By the same token, if people find my logic very faulty, I would like to hear from them as well!Thank You everyone, and I look forward to being a more active member of the list. (Dallas, TX)

Posted July 3, 2006 · July 3, 2006

,

i am sure you will get responses from those who have more experience

than I do. I had two surgeries - one to remove the c-toma, that had

destroyed the malleus and incus, and a second for reconstruction.

From all that I read, the likelihood of facial paralysis is slim. Of

course, that doesn't matter if it is you. Apparently, however, they

can put some sort of sensor on the nerve during surgery to alert them

of potential damage and also, even if one comes out of surgery with

some paralysis, the nerve damage frequently heals itself. I was much

more concerned about the potential damage the c-toma could do.

Hearing loss is one thing; having it continue to grow closer to the

brain is another.

Don't apologize for the lengthy message. As you said, the details are

important, and you articulated them perfectly. I wonder when they can

schedule surgery for you. I would think they couldn't schedule for a

month or so. Perhaps they could do another CAT scan to determine rate

of growth. I am just personally thrilled to be on this side of the

surgeries. All of the unknown is very scary and no one knows for

certain until they get in there. I would think, however, that surgery

would have less potential of more serious damage, if the c-toma is

smaller rather than larger.

Ok. That's my two cents worth. Let us know what you are thinking and

what you decide.

le (Cincinnati, OH)

On Jul 3, 2006, at 1:48 PM, wrote:

> Hello Everyone,

>

> I've been a member of the group for a couple of months now, and I've

> been reading the digest a couple of times a week. However, this is

> my first time to post.

>

> This is my situation- I would like any and all feedback or advice

> anyone has. I have put off making a decision about what to do about

> my c-toma long enough, and I need to make a decision relatively

> soon. My situation is probably very similar to what many people have

> experienced- I am 24 years old, and when I was a child I had two

> sets of tubes put into my ears (the second set put in after the

> first set fell out) to try and ameliorate the ear infections I was

> having. Then, when I was about 9 years old I had to get

> tympanoplasty surgery (the ear drum skin graft surgery) on both

> ears, since my ear drums had not closed properly from the tubes.

>

> That's the past. I had no problems with my ears for a long time,

> about 13 years or so. Fast forward to last summer, summer of 2005,

> basically one year ago this month. I swim at the gym as usual but

> water gets in my left ear as I'm practicing flipping in the water

> (learned not to do that again!). That night, it becomes clear my

> left ear is infected, because it is painful, feels full, and is

> giving off pretty unpleasant discharge. I go to the doctor, an ENT I

> hadn't been to before here in Dallas, Texas where I live. We take

> care of the ear infection, and all is well, but I come back 6 months

> later (last December or so) for a check-up just so he can take a

> look, and he orders a CAT scan since he thinks that there could be a

> c-toma forming in my left ear. (However, how long it's been there

> seems to be something that is impossible to know, since I wasn't

> having ENT check-ups basically between the ages of 10 and 23).

>

> I get the CAT scan done, and it comes back and my doctor says that

> it is highly " suspicious " for a cholesteatoma. Thus far I have had 2

> opinions, and neither doctor has said firmly and conclusively, " Yes,

> you have a cholesteatoma, " but they both said that the odds are over

> 90% and recommend surgery asap. They said that the Incus (one of the

> three ossicles) was partly blocked from view in the CAT scan, so

> that it's possible that the c-toma has already gobbled it up. Sure

> enough, my hearing in my left ear is distinctly less than in my

> right, which we confirmed with a hearing test. (Thinking out loud,

> though, does that necessarily mean that the c-toma has worn away one

> of my hearing ossicles, or could that also be a function of a

> perforated ear drum in that ear- I don't know. Apparently my ear

> drum in my left ear didn't fully close up, even after the

> tympanoplasty surgery).

>

> I apologize for being so verbose, but the devil certainly seems to

> be in the details when discussing these issues...

>

> So here I am now with a choice to make. Both doctors I have seen,

> one of whom is a nationally recognized otologist who I trust to

> be " on top of his game " , have said that I need to get c-toma surgery

> and that I should definitely do it sooner rather than later.

> However, I'm just not quite ready to sign on the dotted line yet.

> Here's why:

>

> 1. It still isn't a certainty that I have c-toma, though of course

> it is certainly the most likely possibility.

>

> 2. The surgery almost seems to bring more problems with it than it

> does solutions. My doctor told me that my hearing could actually be

> LESS after the surgery, since they may have to remove my ossicles

> and put in prostheses. Additionally, I'm not thrilled about the idea

> of having 5 or more surgeries to remove this thing- the rate of

> recurrence in " canal wall up " procedures, as my doctor recommended

> we do (and which I agree with because of the unpleasant cosmetic

> ramifications of the " canal wall down " procedure) is EXTREMELY high

> (20-40% is what I was told). Last, and I've partly gotten over this,

> but the possibility of facial nerve damage that would actually make

> me lose the ability to move half of my face is very alarming to me.

> The fact that my doctor said that this has never happened to any of

> his patients or to any patient at the ENT clinic at University of

> Texas Southwestern Medical Center where his practice is is certainly

> reassuring, but still, isn't there always a first? Given the choice,

> I would choose hearing loss in 1 ear over lifelong facial paralysis

> any day.

>

> 3. Another concern I have is just the general way that surgery is

> approached by many in the medical community these days. I'm no

> expert in this at all, but I have heard it said that upwards of 70%

> of surgical procedures these days are unnecessary. Additionally,

> they don't seem to be that successful. I take my own personal

> experience as a case in point: Clearly the doctors who recommended

> tubes be put in my ears (and the ears of millions of kids in my

> generation) were not well advised. That seems to be one of the big

> reasons why we have lists like this one! Additionally, the

> tympanoplasty I had done when I was 9 didn't apparently work all

> that well. Surgery just doesn't seem to be the magic bullet that

> it's promised to be. Today the doctors are telling me I need to get

> surgery to correct a problem, but doctors also told my mother when I

> was a child that I needed tubes in my ears to prevent future ear

> infections. Clearly, the risks of tubes outweighed the rewards,

> which is why I'm in the present situation. I'm not saying that

> surgery is a bad thing, only that it seems we need more thorough and

> conservative criteria before going down that road.

>

> I asked my doctor if it was a CERTAINTY that my c-toma was going to

> grow and become increasingly problematic as time goes on, or if

> there was a possibility that I could live with this c-toma, perhaps

> having reduced hearing in my left ear, but never really having

> problems in the future. I found his answer very vague. (Again, he is

> an expert in his field and I am lucky to have him as a doctor, but I

> believe I have to approach all of this carefully). He said that Yes,

> it is a certainty that my c-toma will grow and create some or all of

> the resultant problems with it (hearing loss, infection, potentially

> even worse). However, he said, the thing that is a variable is the

> question of WHEN. He said it could be two weeks, or it could be 10

> years, he really had no way to know.

>

> To me, something feels off about this. How can something be a

> CERTAIN problem, but we then have NO idea about the time frame? This

> doesn't seem quite right to me.

>

> One specific question I have for everyone: Has anyone ever known of

> someone who HAS indeed lost their hearing, had ear problems, or had

> meningitis or anything like that as a result of c-toma? The posts I

> have read have been very helpful in discussing people's experiences

> with c-toma surgery, recurrence, etc., but doesn't it seem a little

> strange that, while we all know many people through this list who

> have had experience with c-toma surgery, we don't seem to have a

> whole lot of living examples of people saying, " I lost all the

> hearing in my ear due to c-toma, and I sure wish I had gotten the

> surgery, " or anything like that. Perhaps they are out there, I'm

> just not coming across them. Any information in this area would be

> much appreciated, as I'm just trying to assess whether the fact I

> have a c-toma means FOR SURE that it is going to grow and create

> problems, or if it could be relatively dormant. Heck, for all I know

> I've been living with this thing for the last 14 years or so and

> didn't even know it. Or, it could have grown after my ear infection

> last year, and be growing more right now as I type.

>

> I apologize again for this verbose posting, but I wanted to give

> everyone my full situation and describe my thinking on it thus far.

> What I would like to ask anyone who was nice enough to read this

> email is what their advice would be that I do at this point. Also, I

> would love to know if there is anyone else in the same boat as me,

> who is concerned about their c-toma and is looking into the

> possibility of surgery, but who is as of yet unconvinced that it is

> the best step. If there is anyone who has been diagnosed with c-toma

> but decided NOT to do the surgery it would be good to hear from them

> and understand their reasons for doing so. By the same token, if

> people find my logic very faulty, I would like to hear from them as

> well!

>

> Thank You everyone, and I look forward to being a more active member

> of the list.

>

> (Dallas, TX)

>

Posted July 3, 2006 · July 3, 2006

,

All of the worries you have concerning the surgery will happen anyway if you DON'T have the surgery. The c-toma will continue to grow until it destroys everything inside your ear and then into your brain. You could end up with paralysis of your face, lost of any taste, and even eventually death.

I don't know who your doctor is, however, I would hope that he has encouraged you to research this subject so that you would know what to expect.

I also live in the Dallas area. My 16 year old son is scheduled for surgery on July 19th. We are using Dr. Trone at Medical City. He is very good and has quite a bit of experience with treating c-tomas.

From what I have been able to determine from research of this subject is that the c-toma will definitely continue to grow. As far as how quickly...that seems to be a definite variable. Sometimes they grow relatively quickly, and sometimes they grow extremely slow, from what I have been able to determine the rate of growth differs from one person to the next.

As far the problems caused from the c-tomas, I don't know which posts you have been reading, however, I have read case after case of the problems that had to be corrected because of damage caused by the c-toma.

From what I am reading, the surgeries themselves are very painful, however, it is not the surgery that has caused the loss of bones and tissue...it is the c-toma which destroyed those.

I am definitely NOT a advocate of diving into surgery if there are other viable alternatives, however, I also do not believe in putting off surgery when there are NOT viable alternatives.

Ultimately, you are the one who has to make the final decision. I hope you don't wait too long.

Best regards, Annette

New Member Seeking Your Advice

Hello Everyone,I've been a member of the group for a couple of months now, and I've been reading the digest a couple of times a week. However, this is my first time to post.This is my situation- I would like any and all feedback or advice anyone has. I have put off making a decision about what to do about my c-toma long enough, and I need to make a decision relatively soon. My situation is probably very similar to what many people have experienced- I am 24 years old, and when I was a child I had two sets of tubes put into my ears (the second set put in after the first set fell out) to try and ameliorate the ear infections I was having. Then, when I was about 9 years old I had to get tympanoplasty surgery (the ear drum skin graft surgery) on both ears, since my ear drums had not closed properly from the tubes.That's the past. I had no problems with my ears for a long time, about 13 years or so. Fast

forward to last summer, summer of 2005, basically one year ago this month. I swim at the gym as usual but water gets in my left ear as I'm practicing flipping in the water (learned not to do that again!). That night, it becomes clear my left ear is infected, because it is painful, feels full, and is giving off pretty unpleasant discharge. I go to the doctor, an ENT I hadn't been to before here in Dallas, Texas where I live. We take care of the ear infection, and all is well, but I come back 6 months later (last December or so) for a check-up just so he can take a look, and he orders a CAT scan since he thinks that there could be a c-toma forming in my left ear. (However, how long it's been there seems to be something that is impossible to know, since I wasn't having ENT check-ups basically between the ages of 10 and 23). I get the CAT scan done, and it comes back and my doctor says that it is highly "suspicious"

for a cholesteatoma. Thus far I have had 2 opinions, and neither doctor has said firmly and conclusively, "Yes, you have a cholesteatoma, " but they both said that the odds are over 90% and recommend surgery asap. They said that the Incus (one of the three ossicles) was partly blocked from view in the CAT scan, so that it's possible that the c-toma has already gobbled it up. Sure enough, my hearing in my left ear is distinctly less than in my right, which we confirmed with a hearing test. (Thinking out loud, though, does that necessarily mean that the c-toma has worn away one of my hearing ossicles, or could that also be a function of a perforated ear drum in that ear- I don't know. Apparently my ear drum in my left ear didn't fully close up, even after the tympanoplasty surgery).I apologize for being so verbose, but the devil certainly seems to be in the details when discussing these issues...So here I am

now with a choice to make. Both doctors I have seen, one of whom is a nationally recognized otologist who I trust to be "on top of his game", have said that I need to get c-toma surgery and that I should definitely do it sooner rather than later. However, I'm just not quite ready to sign on the dotted line yet. Here's why:1. It still isn't a certainty that I have c-toma, though of course it is certainly the most likely possibility. 2. The surgery almost seems to bring more problems with it than it does solutions. My doctor told me that my hearing could actually be LESS after the surgery, since they may have to remove my ossicles and put in prostheses. Additionally, I'm not thrilled about the idea of having 5 or more surgeries to remove this thing- the rate of recurrence in "canal wall up" procedures, as my doctor recommended we do (and which I agree with because of the unpleasant cosmetic ramifications of

the "canal wall down" procedure) is EXTREMELY high (20-40% is what I was told). Last, and I've partly gotten over this, but the possibility of facial nerve damage that would actually make me lose the ability to move half of my face is very alarming to me. The fact that my doctor said that this has never happened to any of his patients or to any patient at the ENT clinic at University of Texas Southwestern Medical Center where his practice is is certainly reassuring, but still, isn't there always a first? Given the choice, I would choose hearing loss in 1 ear over lifelong facial paralysis any day.3. Another concern I have is just the general way that surgery is approached by many in the medical community these days. I'm no expert in this at all, but I have heard it said that upwards of 70% of surgical procedures these days are unnecessary. Additionally, they don't seem to be that successful. I take my own personal

experience as a case in point: Clearly the doctors who recommended tubes be put in my ears (and the ears of millions of kids in my generation) were not well advised. That seems to be one of the big reasons why we have lists like this one! Additionally, the tympanoplasty I had done when I was 9 didn't apparently work all that well. Surgery just doesn't seem to be the magic bullet that it's promised to be. Today the doctors are telling me I need to get surgery to correct a problem, but doctors also told my mother when I was a child that I needed tubes in my ears to prevent future ear infections. Clearly, the risks of tubes outweighed the rewards, which is why I'm in the present situation. I'm not saying that surgery is a bad thing, only that it seems we need more thorough and conservative criteria before going down that road.I asked my doctor if it was a CERTAINTY that my c-toma was going to grow and become

increasingly problematic as time goes on, or if there was a possibility that I could live with this c-toma, perhaps having reduced hearing in my left ear, but never really having problems in the future. I found his answer very vague. (Again, he is an expert in his field and I am lucky to have him as a doctor, but I believe I have to approach all of this carefully). He said that Yes, it is a certainty that my c-toma will grow and create some or all of the resultant problems with it (hearing loss, infection, potentially even worse). However, he said, the thing that is a variable is the question of WHEN. He said it could be two weeks, or it could be 10 years, he really had no way to know. To me, something feels off about this. How can something be a CERTAIN problem, but we then have NO idea about the time frame? This doesn't seem quite right to me.One specific question I have for everyone: Has anyone ever known

of someone who HAS indeed lost their hearing, had ear problems, or had meningitis or anything like that as a result of c-toma? The posts I have read have been very helpful in discussing people's experiences with c-toma surgery, recurrence, etc., but doesn't it seem a little strange that, while we all know many people through this list who have had experience with c-toma surgery, we don't seem to have a whole lot of living examples of people saying, "I lost all the hearing in my ear due to c-toma, and I sure wish I had gotten the surgery," or anything like that. Perhaps they are out there, I'm just not coming across them. Any information in this area would be much appreciated, as I'm just trying to assess whether the fact I have a c-toma means FOR SURE that it is going to grow and create problems, or if it could be relatively dormant. Heck, for all I know I've been living with this thing for the last 14 years or so and

didn't even know it. Or, it could have grown after my ear infection last year, and be growing more right now as I type. I apologize again for this verbose posting, but I wanted to give everyone my full situation and describe my thinking on it thus far. What I would like to ask anyone who was nice enough to read this email is what their advice would be that I do at this point. Also, I would love to know if there is anyone else in the same boat as me, who is concerned about their c-toma and is looking into the possibility of surgery, but who is as of yet unconvinced that it is the best step. If there is anyone who has been diagnosed with c-toma but decided NOT to do the surgery it would be good to hear from them and understand their reasons for doing so. By the same token, if people find my logic very faulty, I would like to hear from them as well!Thank You everyone, and I look forward to being a more active

member of the list. (Dallas, TX)

Posted July 3, 2006 · July 3, 2006

Hello

Most of us here have already had surgeries and are well aware that gambling with ctoma is not worth the risk. The ENT doctors are the experts and if they think you should have surgery then it's probably good advice.

I ignored the problems I had with draining ears and chronic ear-ache for years. After all I'd always had lots of ear problems and hearing loss and my general doctor thought I'd be wasting my time going back to ENT. And then within the space of a couple of weeks a lot of ctoma symptoms appeared rapidly. I developed vertigo, face paralysis, fearsome headaches, double vision and a lot of pain throughout my head, neck and shoulder. At that point I'd become an emergency case and was at high risk from cranial complications. 5 years on and 4 surgeries things have improved greatly though I'm still having to deal with a few balance problems and some loss of facial function.

The trouble is that you never know when the ctoma will reach a critical stage, though when it does it's certainly an ordeal and irreversible damage may taken place by then. It's always better to go in for surgery sooner rather than later and in the long-run the surgery is far more preferable to the alternative.

Phil

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Posted July 3, 2006 · July 3, 2006

Glad you found this site. I'm one that has had a CWD

(modified radical version) and am very glad I had it.

Prior to my CWD I had 2 removal attempts and the

c-toma came back. The CWD provides about a 85% chance

that the c-toma will not come back, mine has not. In

the time since me CWD NO ONE has ever noticed that I

had one, I never heard of any who had it been noticed

other than explaining the weird hair cut. Hair grows

back quickly. By the way my CWD was in 1979, so it's

time tested....

tom hansen

--- <nathancrow@...> wrote:

> Hello Everyone,

>

> I've been a member of the group for a couple of

> months now, and I've

> been reading the digest a couple of times a week.

> However, this is

> my first time to post.

>

> This is my situation- I would like any and all

> feedback or advice

> anyone has. I have put off making a decision about

> what to do about

> my c-toma long enough, and I need to make a decision

> relatively

> soon. My situation is probably very similar to what

> many people have

> experienced- I am 24 years old, and when I was a

> child I had two

> sets of tubes put into my ears (the second set put

> in after the

> first set fell out) to try and ameliorate the ear

> infections I was

> having. Then, when I was about 9 years old I had to

> get

> tympanoplasty surgery (the ear drum skin graft

> surgery) on both

> ears, since my ear drums had not closed properly

> from the tubes.

>

> That's the past. I had no problems with my ears for

> a long time,

> about 13 years or so. Fast forward to last summer,

> summer of 2005,

> basically one year ago this month. I swim at the gym

> as usual but

> water gets in my left ear as I'm practicing flipping

> in the water

> (learned not to do that again!). That night, it

> becomes clear my

> left ear is infected, because it is painful, feels

> full, and is

> giving off pretty unpleasant discharge. I go to the

> doctor, an ENT I

> hadn't been to before here in Dallas, Texas where I

> live. We take

> care of the ear infection, and all is well, but I

> come back 6 months

> later (last December or so) for a check-up just so

> he can take a

> look, and he orders a CAT scan since he thinks that

> there could be a

> c-toma forming in my left ear. (However, how long

> it's been there

> seems to be something that is impossible to know,

> since I wasn't

> having ENT check-ups basically between the ages of

> 10 and 23).

>

> I get the CAT scan done, and it comes back and my

> doctor says that

> it is highly " suspicious " for a cholesteatoma. Thus

> far I have had 2

> opinions, and neither doctor has said firmly and

> conclusively, " Yes,

> you have a cholesteatoma, " but they both said that

> the odds are over

> 90% and recommend surgery asap. They said that the

> Incus (one of the

> three ossicles) was partly blocked from view in the

> CAT scan, so

> that it's possible that the c-toma has already

> gobbled it up. Sure

> enough, my hearing in my left ear is distinctly less

> than in my

> right, which we confirmed with a hearing test.

> (Thinking out loud,

> though, does that necessarily mean that the c-toma

> has worn away one

> of my hearing ossicles, or could that also be a

> function of a

> perforated ear drum in that ear- I don't know.

> Apparently my ear

> drum in my left ear didn't fully close up, even

> after the

> tympanoplasty surgery).

>

> I apologize for being so verbose, but the devil

> certainly seems to

> be in the details when discussing these issues...

>

> So here I am now with a choice to make. Both doctors

> I have seen,

> one of whom is a nationally recognized otologist who

> I trust to

> be " on top of his game " , have said that I need to

> get c-toma surgery

> and that I should definitely do it sooner rather

> than later.

> However, I'm just not quite ready to sign on the

> dotted line yet.

> Here's why:

>

> 1. It still isn't a certainty that I have c-toma,

> though of course

> it is certainly the most likely possibility.

>

> 2. The surgery almost seems to bring more problems

> with it than it

> does solutions. My doctor told me that my hearing

> could actually be

> LESS after the surgery, since they may have to

> remove my ossicles

> and put in prostheses. Additionally, I'm not

> thrilled about the idea

> of having 5 or more surgeries to remove this thing-

> the rate of

> recurrence in " canal wall up " procedures, as my

> doctor recommended

> we do (and which I agree with because of the

> unpleasant cosmetic

> ramifications of the " canal wall down " procedure) is

> EXTREMELY high

> (20-40% is what I was told). Last, and I've partly

> gotten over this,

> but the possibility of facial nerve damage that

> would actually make

> me lose the ability to move half of my face is very

> alarming to me.

> The fact that my doctor said that this has never

> happened to any of

> his patients or to any patient at the ENT clinic at

> University of

> Texas Southwestern Medical Center where his practice

> is is certainly

> reassuring, but still, isn't there always a first?

> Given the choice,

> I would choose hearing loss in 1 ear over lifelong

> facial paralysis

> any day.

>

> 3. Another concern I have is just the general way

> that surgery is

> approached by many in the medical community these

> days. I'm no

> expert in this at all, but I have heard it said that

> upwards of 70%

> of surgical procedures these days are unnecessary.

> Additionally,

> they don't seem to be that successful. I take my own

> personal

> experience as a case in point: Clearly the doctors

> who recommended

> tubes be put in my ears (and the ears of millions of

> kids in my

> generation) were not well advised. That seems to be

> one of the big

> reasons why we have lists like this one!

> Additionally, the

> tympanoplasty I had done when I was 9 didn't

> apparently work all

> that well. Surgery just doesn't seem to be the magic

> bullet that

> it's promised to be. Today the doctors are telling

> me I need to get

> surgery to correct a problem, but doctors also told

> my mother when I

> was a child that I needed tubes in my ears to

> prevent future ear

> infections. Clearly, the risks of tubes outweighed

> the rewards,

> which is why I'm in the present situation. I'm not

> saying that

> surgery is a bad thing, only that it seems we need

> more thorough and

> conservative criteria before going down that road.

>

> I asked my doctor if it was a CERTAINTY that my

> c-toma was going to

> grow and become increasingly problematic as time

> goes on, or if

> there was a possibility that I could live with this

> c-toma, perhaps

> having reduced hearing in my left ear, but never

> really having

> problems in the future. I found his answer very

> vague. (Again, he is

> an expert in his field and I am lucky to have him as

> a doctor, but I

> believe I have to approach all of this carefully).

> He said that Yes,

> it is a certainty that my c-toma will grow and

> create some or all of

> the resultant problems with it (hearing loss,

> infection, potentially

> even worse). However, he said, the thing that is a

> variable is the

> question of WHEN. He said it could be two weeks, or

> it could be 10

> years, he really had no way to know.

>

> To me, something feels off about this. How can

> something

=== message truncated ===

__________________________________________________

Posted July 3, 2006 · July 3, 2006

,

It seemed to me that in parts of your post that you feel like a

lot of surgeries are unnecessary but at the same time you are not

against surgery. I am a strong believer in c-toma and what they can

possibly do to you. Why? Growing up I had a ton of ear infections

with the eardrum bursting with blood and all that good stuff. I

never had tubes put in my ears however. As I was growing up I

started to lose my hearing slowly but surely and never really looked

into it too much but noticed that I said what? a lot and could not

hear people who spoke softly and also some things sounded far away

when they were right next to me (if that makes sense?). I have had

ringing in my right ear for most of my life. Also, everytime I would

get " stuffed up " or get a cold my ears would stay stuffed up for a

looonng time (fluid filled). This may sound weird but when I was

younger I would turn my head upside down and my ear would " open up. "

Must have been the fluid moving around in my ear. I am 28 years old

and had surgery May 30th to remove the c-toma from my right ear,

mastoidectomy and tympanoplasty. I was lucky because the c-toma

didn't destroy my ear bones, but I'm obviously in the early stages

of getting this all taken care of. Now I have to have the left ear

done. The reason the doctors finally suspected c-toma was because of

the fact that I had a severe ear infection that no antibiotic would

clear up. I was to the point of wanting to literally end my life.

The pain was awful. Finally, IV pain meds in the hospital took care

of the pain but the fluid wouldn't clear up.

All the reasons above were enough to convince me that I had

something going on and needed to be taken care of. I just wouldn't

want to see someone like you get to those points because you decided

not to have the surgery. My ENT showed me on the CT scan where the c-

toma had filled my mastoid bone. Your mastoid is suppose to be sort

of a spongy bone so air can flow through I suppose but my mastoid

was filled with c-toma material.

I pray that you come to a decision before you have issues like mine.

I'm sure other people have had worse happen than me but to be able

to get the c-toma before it causes anything worse than what you have

going on now would certainly be good.

Take care,

>

> Hello Everyone,

>

> I've been a member of the group for a couple of months now, and

I've

> been reading the digest a couple of times a week. However, this is

> my first time to post.

>

> This is my situation- I would like any and all feedback or advice

> anyone has. I have put off making a decision about what to do

about

> my c-toma long enough, and I need to make a decision relatively

> soon. My situation is probably very similar to what many people

have

> experienced- I am 24 years old, and when I was a child I had two

> sets of tubes put into my ears (the second set put in after the

> first set fell out) to try and ameliorate the ear infections I was

> having. Then, when I was about 9 years old I had to get

> tympanoplasty surgery (the ear drum skin graft surgery) on both

> ears, since my ear drums had not closed properly from the tubes.

>

> That's the past. I had no problems with my ears for a long time,

> about 13 years or so. Fast forward to last summer, summer of 2005,

> basically one year ago this month. I swim at the gym as usual but

> water gets in my left ear as I'm practicing flipping in the water

> (learned not to do that again!). That night, it becomes clear my

> left ear is infected, because it is painful, feels full, and is

> giving off pretty unpleasant discharge. I go to the doctor, an ENT

I

> hadn't been to before here in Dallas, Texas where I live. We take

> care of the ear infection, and all is well, but I come back 6

months

> later (last December or so) for a check-up just so he can take a

> look, and he orders a CAT scan since he thinks that there could be

a

> c-toma forming in my left ear. (However, how long it's been there

> seems to be something that is impossible to know, since I wasn't

> having ENT check-ups basically between the ages of 10 and 23).

>

> I get the CAT scan done, and it comes back and my doctor says that

> it is highly " suspicious " for a cholesteatoma. Thus far I have had

2

> opinions, and neither doctor has said firmly and

conclusively, " Yes,

> you have a cholesteatoma, " but they both said that the odds are

over

> 90% and recommend surgery asap. They said that the Incus (one of

the

> three ossicles) was partly blocked from view in the CAT scan, so

> that it's possible that the c-toma has already gobbled it up. Sure

> enough, my hearing in my left ear is distinctly less than in my

> right, which we confirmed with a hearing test. (Thinking out loud,

> though, does that necessarily mean that the c-toma has worn away

one

> of my hearing ossicles, or could that also be a function of a

> perforated ear drum in that ear- I don't know. Apparently my ear

> drum in my left ear didn't fully close up, even after the

> tympanoplasty surgery).

>

> I apologize for being so verbose, but the devil certainly seems to

> be in the details when discussing these issues...

>

> So here I am now with a choice to make. Both doctors I have seen,

> one of whom is a nationally recognized otologist who I trust to

> be " on top of his game " , have said that I need to get c-toma

surgery

> and that I should definitely do it sooner rather than later.

> However, I'm just not quite ready to sign on the dotted line yet.

> Here's why:

>

> 1. It still isn't a certainty that I have c-toma, though of course

> it is certainly the most likely possibility.

>

> 2. The surgery almost seems to bring more problems with it than it

> does solutions. My doctor told me that my hearing could actually

be

> LESS after the surgery, since they may have to remove my ossicles

> and put in prostheses. Additionally, I'm not thrilled about the

idea

> of having 5 or more surgeries to remove this thing- the rate of

> recurrence in " canal wall up " procedures, as my doctor recommended

> we do (and which I agree with because of the unpleasant cosmetic

> ramifications of the " canal wall down " procedure) is EXTREMELY

high

> (20-40% is what I was told). Last, and I've partly gotten over

this,

> but the possibility of facial nerve damage that would actually

make

> me lose the ability to move half of my face is very alarming to

me.

> The fact that my doctor said that this has never happened to any

of

> his patients or to any patient at the ENT clinic at University of

> Texas Southwestern Medical Center where his practice is is

certainly

> reassuring, but still, isn't there always a first? Given the

choice,

> I would choose hearing loss in 1 ear over lifelong facial

paralysis

> any day.

>

> 3. Another concern I have is just the general way that surgery is

> approached by many in the medical community these days. I'm no

> expert in this at all, but I have heard it said that upwards of

70%