Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 Sounds like a modified radical followed up by a reconstruction. This actuallly is a common approach used by Otologist's and ENT's that know wht they are doing. This is basicly the way mine was treated after 2 failed removal attempts... Tom Hansen From: nujerseygirl <nujerseygirl@...>Subject: Conflicting diagnosischolesteatoma Date: Friday, June 20, 2008, 8:18 AM Hi everyone,Well I have now seen two more specialists in NYC and they disagree onthe diagnosis of c-toma. The first one said it is not a c-toma and Icould just keep it dry and possibly not have any problems in thefuture or "elect" to have the mastoid cleaned out, the eroded bonesreplaced and the eardrum replaced in one operation. He felt thedamage was done from my collapsed eardrum and lifetime of infection.The second surgeon said he is quite sure it technically is a c-tomabut it has not taken the usual oval (football) shape and most doctorswould not recognize it as c-toma. He wants to do the usual two-stageoperation and cannot say if it will be wall up or down. He mentionedthe same three parts to the operation except he would reconstruct thebones during the second operation.So, has anyone ever had anything that sounds like this? Needless tosay, this just makes the decision more complicated and I guess I needanother opinion...but how many more do I get?I've placed a call to the referring ENT so we'll see his take on this.I thought it was going to be a decision between which doctor wouldremove the c-toma, not conflicting diagnosis and procedure. Thestress lever just went up a notch, but in reality they are not muchdifferent as I have no doubt that it needs cleaning out either way.Well, best to all of you, especially the little ones. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 It's hard to say for sure what your next step should be, but I think I would seek out the opinion of one more top notch surgeon. I would let him make his own assessment first, and then explain the diagnosis of the other two to him, and see what he says. Perhaps at this point you may have 2 opinions in sync, perhaps not. Either way, I would hope that by this stage you will have developed a preference for one of the 3 surgeons in terms of their approach and expertise. It may well be that the surgeon won't truly know the situation until he is in there, which is why I think it's vital that you have a top notch surgeon perform the procedure. I know that in both of my surgeries that the Cholesteatoma was larger than they had first anticipated by looking from the outside. > > Hi everyone, > Well I have now seen two more specialists in NYC and they disagree on > the diagnosis of c-toma. The first one said it is not a c-toma and I > could just keep it dry and possibly not have any problems in the > future or " elect " to have the mastoid cleaned out, the eroded bones > replaced and the eardrum replaced in one operation. He felt the > damage was done from my collapsed eardrum and lifetime of infection. > > The second surgeon said he is quite sure it technically is a c-toma > but it has not taken the usual oval (football) shape and most doctors > would not recognize it as c-toma. He wants to do the usual two- stage > operation and cannot say if it will be wall up or down. He mentioned > the same three parts to the operation except he would reconstruct the > bones during the second operation. > > So, has anyone ever had anything that sounds like this? Needless to > say, this just makes the decision more complicated and I guess I need > another opinion...but how many more do I get? > > I've placed a call to the referring ENT so we'll see his take on this. > > I thought it was going to be a decision between which doctor would > remove the c-toma, not conflicting diagnosis and procedure. The > stress lever just went up a notch, but in reality they are not much > different as I have no doubt that it needs cleaning out either way. > > Well, best to all of you, especially the little ones. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 If there is no discharge after stopping all oral and local antibiotic drops, there is less likeliness of C-toma being there. It is better to have reconstruction done at 2ed stage, to be sure of all infection cleared as well as C-Toma. Dr.Arun (India) On 6/20/08, nujerseygirl <nujerseygirl@...> wrote: Hi everyone,Well I have now seen two more specialists in NYC and they disagree onthe diagnosis of c-toma. The first one said it is not a c-toma and Icould just keep it dry and possibly not have any problems in the future or " elect " to have the mastoid cleaned out, the eroded bonesreplaced and the eardrum replaced in one operation. He felt thedamage was done from my collapsed eardrum and lifetime of infection. The second surgeon said he is quite sure it technically is a c-tomabut it has not taken the usual oval (football) shape and most doctorswould not recognize it as c-toma. He wants to do the usual two-stageoperation and cannot say if it will be wall up or down. He mentioned the same three parts to the operation except he would reconstruct thebones during the second operation.So, has anyone ever had anything that sounds like this? Needless tosay, this just makes the decision more complicated and I guess I need another opinion...but how many more do I get?I've placed a call to the referring ENT so we'll see his take on this.I thought it was going to be a decision between which doctor wouldremove the c-toma, not conflicting diagnosis and procedure. The stress lever just went up a notch, but in reality they are not muchdifferent as I have no doubt that it needs cleaning out either way.Well, best to all of you, especially the little ones. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 I would agree with this (getting the third opinion), but I also like your touching base with the referring ENT. Personally I like the second Doctor's approach better ... it's the more conservative route (even though that doctor is recommending surgery). There is obviously something wrong - might as well have a trained eye take a closer look. If this stuff was easier to see, more of us would be diagnosed earlier and fewer doctors would be so " surprised " at the extent of the damage when they do go in. Matt dskempton wrote: > > It's hard to say for sure what your next step should be, but I think > I would seek out the opinion of one more top notch surgeon. I would > let him make his own assessment first, and then explain the diagnosis > of the other two to him, and see what he says. Perhaps at this point > you may have 2 opinions in sync, perhaps not. > > Either way, I would hope that by this stage you will have developed a > preference for one of the 3 surgeons in terms of their approach and > expertise. > > It may well be that the surgeon won't truly know the situation until > he is in there, which is why I think it's vital that you have a top > notch surgeon perform the procedure. I know that in both of my > surgeries that the Cholesteatoma was larger than they had first > anticipated by looking from the outside. > > > > > > Hi everyone, > > Well I have now seen two more specialists in NYC and they disagree > on > > the diagnosis of c-toma. The first one said it is not a c-toma and > I > > could just keep it dry and possibly not have any problems in the > > future or " elect " to have the mastoid cleaned out, the eroded bones > > replaced and the eardrum replaced in one operation. He felt the > > damage was done from my collapsed eardrum and lifetime of infection. > > > > The second surgeon said he is quite sure it technically is a c-toma > > but it has not taken the usual oval (football) shape and most > doctors > > would not recognize it as c-toma. He wants to do the usual two- > stage > > operation and cannot say if it will be wall up or down. He mentioned > > the same three parts to the operation except he would reconstruct > the > > bones during the second operation. > > > > So, has anyone ever had anything that sounds like this? Needless to > > say, this just makes the decision more complicated and I guess I > need > > another opinion...but how many more do I get? > > > > I've placed a call to the referring ENT so we'll see his take on > this. > > > > I thought it was going to be a decision between which doctor would > > remove the c-toma, not conflicting diagnosis and procedure. The > > stress lever just went up a notch, but in reality they are not much > > different as I have no doubt that it needs cleaning out either way. > > > > Well, best to all of you, especially the little ones. > > > > > > -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 Aloha, I highly reccommend going with the doctor that would do the procedure in 2 stages. CWD, (canal wall down) has the best rate of success and less likely to reoccur. I just had a CWD mastoidectomy, it was rather advanced and now I am in recovery waiting to have the next stage in 5-6 months. I had the first stage done about 4 weeks ago and I feel like I am back to normal. Even my hearing is back to the way it was before the operation, and the incision has healed completely. The only thing left that even hints that I had an operation is the widened ear canal, but its not noticeable except from the side. I wish you good luck. Take it easy and relax, everything will be all right. Best Regards Dan cholesteatoma From: drarunjind@...Date: Fri, 20 Jun 2008 19:41:05 +0530Subject: Re: Conflicting diagnosis If there is no discharge after stopping all oral and local antibiotic drops, there is less likeliness of C-toma being there. It is better to have reconstruction done at 2ed stage, to be sure of all infection cleared as well as C-Toma. Dr.Arun (India) On 6/20/08, nujerseygirl <nujerseygirl > wrote: Hi everyone,Well I have now seen two more specialists in NYC and they disagree onthe diagnosis of c-toma. The first one said it is not a c-toma and Icould just keep it dry and possibly not have any problems in thefuture or "elect" to have the mastoid cleaned out, the eroded bonesreplaced and the eardrum replaced in one operation. He felt thedamage was done from my collapsed eardrum and lifetime of infection.The second surgeon said he is quite sure it technically is a c-tomabut it has not taken the usual oval (football) shape and most doctorswould not recognize it as c-toma. He wants to do the usual two-stageoperation and cannot say if it will be wall up or down. He mentionedthe same three parts to the operation except he would reconstruct thebones during the second operation.So, has anyone ever had anything that sounds like this? Needless tosay, this just makes the decision more complicated and I guess I needanother opinion...but how many more do I get?I've placed a call to the referring ENT so we'll see his take on this.I thought it was going to be a decision between which doctor wouldremove the c-toma, not conflicting diagnosis and procedure. Thestress lever just went up a notch, but in reality they are not muchdifferent as I have no doubt that it needs cleaning out either way.Well, best to all of you, especially the little ones. The i’m Talkathon starts 6/24/08. For now, give amongst yourselves. Learn More Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 30 year after my Modified Radical no one has ever noticed my ear canel was larger than the other one.... Tom Hansen Hi everyone,Well I have now seen two more specialists in NYC and they disagree onthe diagnosis of c-toma. The first one said it is not a c-toma and Icould just keep it dry and possibly not have any problems in thefuture or "elect" to have the mastoid cleaned out, the eroded bonesreplaced and the eardrum replaced in one operation. He felt thedamage was done from my collapsed eardrum and lifetime of infection.The second surgeon said he is quite sure it technically is a c-tomabut it has not taken the usual oval (football) shape and most doctorswould not recognize it as c-toma. He wants to do the usual two-stageoperation and cannot say if it will be wall up or down. He mentionedthe same three parts to the operation except he would reconstruct thebones during the second operation.So, has anyone ever had anything that sounds like this? Needless tosay, this just makes the decision more complicated and I guess I needanother opinion...but how many more do I get?I've placed a call to the referring ENT so we'll see his take on this.I thought it was going to be a decision between which doctor wouldremove the c-toma, not conflicting diagnosis and procedure. Thestress lever just went up a notch, but in reality they are not muchdifferent as I have no doubt that it needs cleaning out either way.Well, best to all of you, especially the little ones. The i¢m Talkathon starts 6/24/08. For now, give amongst yourselves. Learn More Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 Thanks again to all your hints and thoughts, they will not be wasted. I definitely feel the most comfortable with the third surgeon who thinks it is the c-toma. The first one I eliminated immediately, the second one I feel a little uncomfortable as he doesn't think it's a c-toma and may not look carefully for it although he is highly respected. So at least that is clear so far. Also the last doctor has done about a thousand of these...does that sound good to you too or not? The ENT returned my call today and said I did see two of the top surgeons, but since they disagree he gave me a third name if I choose to use it. Also waiting for a call from my plastic surgeon who I really respect as he led me to the doctor that cured my staph infection. So with all of you and the docs, I guess I'm getting to a less panicky state. It is good to know that so many of you have successfully gone through all of this. > > > > Hi everyone, > > Well I have now seen two more specialists in NYC and they disagree > on > > the diagnosis of c-toma. The first one said it is not a c-toma and > I > > could just keep it dry and possibly not have any problems in the > > future or " elect " to have the mastoid cleaned out, the eroded bones > > replaced and the eardrum replaced in one operation. He felt the > > damage was done from my collapsed eardrum and lifetime of infection. > > > > The second surgeon said he is quite sure it technically is a c-toma > > but it has not taken the usual oval (football) shape and most > doctors > > would not recognize it as c-toma. He wants to do the usual two- > stage > > operation and cannot say if it will be wall up or down. He mentioned > > the same three parts to the operation except he would reconstruct > the > > bones during the second operation. > > > > So, has anyone ever had anything that sounds like this? Needless to > > say, this just makes the decision more complicated and I guess I > need > > another opinion...but how many more do I get? > > > > I've placed a call to the referring ENT so we'll see his take on > this. > > > > I thought it was going to be a decision between which doctor would > > remove the c-toma, not conflicting diagnosis and procedure. The > > stress lever just went up a notch, but in reality they are not much > > different as I have no doubt that it needs cleaning out either way. > > > > Well, best to all of you, especially the little ones. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 I think your approach is sensible. I think the key thing is finding an experienced surgeon that you feel comfortable with. You have done more research that most, and at some point you kinda have to go with your gut instinct. From: nujerseygirl <nujerseygirl@...>Subject: Re: Conflicting diagnosischolesteatoma Date: Friday, June 20, 2008, 7:59 PM Thanks again to all your hints and thoughts, they will not be wasted. I definitely feel the most comfortable with the third surgeon whothinks it is the c-toma. The first one I eliminated immediately, thesecond one I feel a little uncomfortable as he doesn't think it's ac-toma and may not look carefully for it although he is highlyrespected. So at least that is clear so far. Also the last doctorhas done about a thousand of these...does that sound good to you tooor not?The ENT returned my call today and said I did see two of the topsurgeons, but since they disagree he gave me a third name if I chooseto use it. Also waiting for a call from my plastic surgeon who Ireally respect as he led me to the doctor that cured my staph infection.So with all of you and the docs, I guess I'm getting to a less panickystate. It is good to know that so many of you have successfully gonethrough all of this.> >> > Hi everyone,> > Well I have now seen two more specialists in NYC and they disagree > on> > the diagnosis of c-toma. The first one said it is not a c-toma and > I> > could just keep it dry and possibly not have any problems in the> > future or "elect" to have the mastoid cleaned out, the eroded bones> > replaced and the eardrum replaced in one operation. He felt the> > damage was done from my collapsed eardrum and lifetime of infection.> > > > The second surgeon said he is quite sure it technically is a c-toma> > but it has not taken the usual oval (football) shape and most > doctors> > would not recognize it as c-toma. He wants to do the usual two-> stage> > operation and cannot say if it will be wall up or down. He mentioned> > the same three parts to the operation except he would reconstruct > the> > bones during the second operation.> > > > So, has anyone ever had anything that sounds like this? Needless to> > say, this just makes the decision more complicated and I guess I > need> > another opinion...but how many more do I get?> > > > I've placed a call to the referring ENT so we'll see his take on > this.> > > > I thought it was going to be a decision between which doctor would> > remove the c-toma, not conflicting diagnosis and procedure. The> > stress lever just went up a notch, but in reality they are not much> > different as I have no doubt that it needs cleaning out either way.> > > > Well, best to all of you, especially the little ones.> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 The ear has been completely dry since stopping the Ciprodex. It only had one episode of drainage which was a thick clear fluid, slightly yellow with tiny streaks of blood that felt like it burst out all at once relieving the ear pain. The only other drainage previously was very water-like and I thought at the time was trapped water coming out. Is this what the c-toma drainage usually is like? (Sorry for the graphic description). > > > > Hi everyone, > > Well I have now seen two more specialists in NYC and they disagree on > > the diagnosis of c-toma. The first one said it is not a c-toma and I > > could just keep it dry and possibly not have any problems in the > > future or " elect " to have the mastoid cleaned out, the eroded bones > > replaced and the eardrum replaced in one operation. He felt the > > damage was done from my collapsed eardrum and lifetime of infection. > > > > The second surgeon said he is quite sure it technically is a c-toma > > but it has not taken the usual oval (football) shape and most doctors > > would not recognize it as c-toma. He wants to do the usual two-stage > > operation and cannot say if it will be wall up or down. He mentioned > > the same three parts to the operation except he would reconstruct the > > bones during the second operation. > > > > So, has anyone ever had anything that sounds like this? Needless to > > say, this just makes the decision more complicated and I guess I need > > another opinion...but how many more do I get? > > > > I've placed a call to the referring ENT so we'll see his take on this. > > > > I thought it was going to be a decision between which doctor would > > remove the c-toma, not conflicting diagnosis and procedure. The > > stress lever just went up a notch, but in reality they are not much > > different as I have no doubt that it needs cleaning out either way. > > > > Well, best to all of you, especially the little ones. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 Hi, Chloe has had the type of cholesteatoma that is " pearl " like, but she has also had some that is like a matrix of debris. This was running through her mastoid, and has actually just returned. We are in the process of removing it again. She has her next surgery on July 2. Try googling cholesteatoma matrix and see if you recognize that description. Like you said, they are going in anyway, and our experience has been that the CT scan will make a lot more sense to them once they do the surgery. Basically, the scan says something is there, but only surgery says exactly what! A good surgeon will send any debris for a culture anyway. Good luck! On Fri, Jun 20, 2008 at 9:18 AM, nujerseygirl <nujerseygirl@...> wrote: Hi everyone,Well I have now seen two more specialists in NYC and they disagree onthe diagnosis of c-toma. The first one said it is not a c-toma and I could just keep it dry and possibly not have any problems in thefuture or " elect " to have the mastoid cleaned out, the eroded bonesreplaced and the eardrum replaced in one operation. He felt thedamage was done from my collapsed eardrum and lifetime of infection. The second surgeon said he is quite sure it technically is a c-tomabut it has not taken the usual oval (football) shape and most doctorswould not recognize it as c-toma. He wants to do the usual two-stage operation and cannot say if it will be wall up or down. He mentionedthe same three parts to the operation except he would reconstruct thebones during the second operation.So, has anyone ever had anything that sounds like this? Needless to say, this just makes the decision more complicated and I guess I needanother opinion...but how many more do I get?I've placed a call to the referring ENT so we'll see his take on this.I thought it was going to be a decision between which doctor would remove the c-toma, not conflicting diagnosis and procedure. Thestress lever just went up a notch, but in reality they are not muchdifferent as I have no doubt that it needs cleaning out either way.Well, best to all of you, especially the little ones. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2008 Report Share Posted June 21, 2008 My c-toma hadn't drained for 5 years, just a feeling of fullness, and it did have a thick fluid build up behind the ear drum - which was not a part of the ctoma. And as long as I watched my diet (no dairy) I didn't get infections, but it still eroded away at the bones. So, drainage isn't always a good indication. Either way, it sounds like the choice of both your doctors was surgery. One of the ways I chose my surgeon (after determining which ones in my area were otologists, not just an ENT) was reading about them on line - mine had been mentioned in several published articles. Then I also called up the hospital clinic where he worked and just asked one of the staff members who had the most experience with ctomas in that department and who they would recommend. My doc was also voted by his colleges in his department to be the doctor that other doctors would take their family member or loved one to. I think it's called the "Best Doctor" award. It took two months to get my initial appointment though, but it was worth the wait. Experience means a lot to me. The very first ENT wanted to do the radical mastoidectomy (I think that's the right term) with no mention of reconstruction at all. He wouldn't even discuss it. Get in, get out. And the other ENT had only seen ctomas about twice a year. Not enough experience for me to let him do surgery on my precious head. :-) I went with the third doc and feel I made the best choice. Good luck! The ear has been completely dry since stopping the Ciprodex. It only had one episode of drainage which was a thick clear fluid, slightly yellow with tiny streaks of blood that felt like it burst out all at once relieving the ear pain. The only other drainage previously was very water-like and I thought at the time was trapped water coming out. Is this what the c-toma drainage usually is like? (Sorry for the graphic description) .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2008 Report Share Posted June 22, 2008 Hi, My husband has had issues with his ears for over 20 yrs with several surgeries during this time frame - one of which was a complete osiscular chain reconstruction - they cleaned out the c-toma and removed and replaced all the destroyed inner ear bones....he too had several doctors look at his ears and not once diagnos C-toma because there was no drainage or smell..... He's going back in again for more surgery to either re-position the prosthetics that moved during a trip up to the top of Pikes Peak -Cog Railway ride.....Although his doctor - who is also touted as being the best in his field - doesn't feel there's any infection going on there he can't explain away the fullness my husband feels in his ear, and shows in his jawline, nor can he explain the pain and dizziness. The scans always show a clean inner ear....yet I'll bet when they get in there it will be a different story.... Since we live in Kansas and the closest ENT hospital is up in Kansas City then Dr. Staeckler is it....My only real issue with him is in that we had to demand a surgery date because he wanted to just keep waiting and seeing how felt in another 6 mos....well it's been alomost 6 mos since his last appt and it's no better. I'll be on the wary side until the surgery is over and we're back home... I just wish more doctors would take the time to read these posts and really listen to the patient and get their noses away from the books.. Books are only as good as the information put in them and the knowledge level of the author(s). Good Luck in your diagnosis and treatments Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2008 Report Share Posted June 22, 2008 Bashing books isn't the answer. If there were more written about the disease in book literature or if the books that have been published were more readily available it would be a good idea - especially if one were geared toward general practitioners. United States libraries are falling WAY behind the libraries throughout the world - it's a national disgrace! We are rapidly becoming further behind in a wide swath of science and technology. The most widely held book in the U.S. on the surgical treatment of cholesteatoma is only held by 56 American libraries and it was written in 1987! The second most widely held book is a conference proceedings from the 1970s and it's not even held in every state. So, I'm afraid I have to disagree emphatically with you. More books for crying out loud! What was that old saying about knowledge being expensive? Personally, I don't like the price we're paying for ignorance! Being a science librarian that struggles daily with inadequate budgets, you kind of struck a VERY raw nerve. Matt J. wrote: > > Hi, > My husband has had issues with his ears for over 20 yrs with several > surgeries during this time frame - one of which was a complete > osiscular chain reconstruction - they cleaned out the c-toma and > removed and replaced all the destroyed inner ear bones....he too had > several doctors look at his ears and not once diagnos C-toma because > there was no drainage or smell..... > > He's going back in again for more surgery to either re-position the > prosthetics that moved during a trip up to the top of Pikes Peak -Cog > Railway ride.....Although his doctor - who is also touted as being > the best in his field - doesn't feel there's any infection going on > there he can't explain away the fullness my husband feels in his ear, > and shows in his jawline, nor can he explain the pain and > dizziness. The scans always show a clean inner ear....yet I'll bet > when they get in there it will be a different story.... > > Since we live in Kansas and the closest ENT hospital is up in Kansas > City then Dr. Staeckler is it....My only real issue with him is in > that we had to demand a surgery date because he wanted to just keep > waiting and seeing how felt in another 6 mos....well it's been > alomost 6 mos since his last appt and it's no better. I'll be on the > wary side until the surgery is over and we're back home... > > I just wish more doctors would take the time to read these posts and > really listen to the patient and get their noses away from the books.. > Books are only as good as the information put in them and the > knowledge level of the author(s). > > Good Luck in your diagnosis and treatments > > -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2008 Report Share Posted June 22, 2008 Matt, I think it was more an expression of frustration than anything else and let's face it, anyone who has had a Cholesteatoma has had to deal with more than their share of frustration. You're right though, books are not the enemy here, ignorance is. Regardless of whether Surgeons and ENTs get their knowledge from textbooks, field experience or web forums, there is clearly a problem in that most are not getting the Cholesteatoma memo at all. Nearly everyone who joins this board starts with the same "I just found out I had a Cholesteatoma, and I never heard of this condition. Apparently it's quite large, but I have seen 10+ ENT expects over the last 10 years." This is still shocking to me, and I have to wonder if there is a way to get this fairly basic information in the hands of every ENT surgeon. I even had one supposed ENT expert who told me to stop eating chicken and ice cream to stop my ear infections and hearing loss. Got a little bit off topic there, but I think this breaks down to a lack of general knowledge amongst ENT doctors regarding Cholesteatomas. How to address this wholesale knowledge gap is the big question. --- On Sun, 6/22/08, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2008 Report Share Posted June 22, 2008 Yes, I guess I'm doubly frustrated. It was absolute total ignorance by medical professionals that kept me from getting properly diagnosed for so long. It took a significant hearing loss and no response to another pill before it was figured out for me. Chicken and ice cream! Wow! Makes you wonder how they reached that conclusion... Matt daniel skempton wrote: > > Matt, I think it was more an expression of frustration than anything > else and let's face it, anyone who has had a Cholesteatoma has had to > deal with more than their share of frustration. You're right though, > books are not the enemy here, ignorance is. > > > > Regardless of whether Surgeons and ENTs get their knowledge from > textbooks, field experience or web forums, there is clearly a problem > in that most are not getting the Cholesteatoma memo at all. > > > > Nearly everyone who joins this board starts with the same " I just > found out I had a Cholesteatoma, and I never heard of this condition. > Apparently it's quite large, but I have seen 10+ ENT expects over the > last 10 years. " This is still shocking to me, and I have to wonder if > there is a way to get this fairly basic information in the hands of > every ENT surgeon. I even had one supposed ENT expert who told me to > stop eating chicken and ice cream to stop my ear infections and > hearing loss. > > > > Got a little bit off topic there, but I think this breaks down to a > lack of general knowledge amongst ENT doctors regarding > Cholesteatomas. How to address this wholesale knowledge gap is the big > question. > > > > --- On *Sun, 6/22/08, Quote Link to comment Share on other sites More sharing options...
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