Re: Re: possible cholesteatoma

[Guest guest]

Hi Rich

Though I'm not a doctor or medico of any sort, from my own personal experience and knowledge, I find some of your post to Angelina excessive, and in fact, incorrect.

A CT scan cannot and does not diagnose a cholesteatoma. Indeed, many doctors these days find it's not necessary for a CT scan, as often it provides no additional clues to the existence or extent of the growth, although granted, it can and sometimes does aid in defining the extent of the tumour.

You state that after confirmed diagnosis is made, the cholesteatoma is removed and then the ear drum and/or hearing bones are repaired. This is not always the case and depends on what type of surgery is carried out - canal wall up, or canal wall down. In a canal wall down, often the restoration of hearing is done during that first surgery and of course the surgery itself leaves a large mastoid bowl and widened ear canal, allowing the doctor to examine and remove any debris in his office/surgery, rather than requiring the patient to go to theatre for a second-look or restoration of hearing. My own surgery was modified radical mastoidectomy, tympanoplasty and ossiculoplasty - CWD - and this is not unusual; it just depends on what the surgeon finds.

You also stated that "an ear ache is a sign of ear infection." This is by no means always true. It could be a sign of anything wrong with the head, neck or shoulder; any injury or illness which causes the patient to refrain from moving the head or neck correctly can cause pain in the ear. TMJ can cause terrible ear pain, teething in a young child can cause excrutiating pain for the litle ones and there are numerous other things that could cause ear ache. If otitis media is confirmed it can (but may not always) involve a build-up of pus. This build-up will not continue unless treated. I have chronic otitis media and have visited the doctor often, to be told there is nothing to be done but to wait it out. It is now thought that many of the infections previously treated by antibiotics are viral infections and so do not respond (either at all, or as well) to antibiotics and therefore they are left untreated (by which I mean unmedicated) and often clear up very soon by themselves. The pus (if indeed there is pus, as it could just be an inflammation within the middle ear area) does not built up until it ruptures the ear drum. However, granted, if and when that does happen, it does give an enormous amount of relief to the patient as I'm sure many of us will know. If anyone experiences an earache that is different from what is normal for them, they should perhaps seek treatment, but I don't believe there is a need to 'go to an ENT doctor immediately'; a GP would suffice.

Rich, maybe our experiences are different and that's perhaps what causes our views to be different; I don't wish to be seen as nit-picking at your post, but I do feel it's important to post accurately, correctly, and informatively.

Kazzy :-)

Re: possible cholesteatoma

Hi Angelina,If your doctor sees a "possible" ctoma in your son's right ear, why ishe recommending a tympanoplasty ASAP? It seems to me your son shouldhave a CT to confirm an actual ctoma and its size first. If a ctomais confirmed, the surgeon may need to go through the ear drum toremove it, which makes a tympanoplasty uneccessary as the first roundof treatment. Read prior posts and you'll see a pattern. Confirmeddiagnosis first; ctoma removal and then repair of the ear drum and/orhearing bones. Doing the tympanoplasty before a ctoma removal makesno sense what so ever. While the hearing loss you son is experiencingis probably from the ruptured ear drums, it can also be from a ctoma.Your son's hearing loss is exactly the same as mine before a veryinvasive ctoma was removed. Here's some food for thought, especiallyin children. An ear ache is a sign of an ear infection (ottis media)behind the ear drum. If left untreated, the infection/pus will builduntil it ruptures the ear drum, which is when the person affected getsrelief; however, if the ear ache was untreated, the ear drum is almostsure to be ruptured. Needless to say, anyone experiencing an ear acheshould go to an ENT doctor immediately!Rich >> Hello everyone,> > I wanted to join you since I have found out that this group has > helped many to go through some tough times in the their lives. I am > not panicing yet, but as I learn more about my sons's medical > condition, I am getting more worried about possible outcomes. I would > appreciate if any of you had similar experience and would share them > with me.> > My family lives in Bosnia and Herzegovina, in Tuzla (population 150 > 000).My son Memo has always been a very healthy boy. He is 7 now, and > has't even had a cold since he was in kindergarten. we never thought > that he could be seriously ill. We did go twice (back in 2005) to see > a specialist because we suspected that he doesn't hear well, but the > doctor said that it is a quite normal audiogram for a child if he > has a cold. He treated it with antibioics and order new tests only if > he gets an earache or something. > > Anyway, around New Years he first had an earache. We took him to a > pediatrician who recommended an otologist who just gave him some > antibiotics and ordered audiogram. The pain went off the same day > any the child was OK, but we did some more hearing tests. Now we have > a total of 5 audiograms and they all show that his hearing is a > little worse then normal (25-35dB). > > He has no other signs of disease and seems a healthy boy. However, > since I wanted to be sure we took him to a best doctor in Tuzla (who > has a private ofice in Tuzla, and doesn't perform surgeries any > more). > > He checked him and reffered us to Zagreb, Croatia to Dr. Boris Pegan. > He was the first one to notice that my son has a condition more > serious than we tought. He said that Memo basically has not ear > drums (both sides). They were perforated and never healed back. > Instead, the membrane formed and it is functioning like an ear drum. > That is good for his hearing and speech development, but on the other > side, this membrane is constantly glued to ear bones (this is why > they are rigid). > > The doctor looked everything through the microscope and believes that > there is a cholesteatoma behind this membrane in the right ear, but > is not sure how big it is. He recomended tympanoplasty ASAP. Since it > has to be done six months apart, we are scheduled for May 9th (right > ear) and then again in November. Also his left ear seems to be free > of C-toma, but he can't be sure untill they open it up. > > I have so many questions now. It worries me the most that he has > problems with both ears and it increases the possibilities of > complications. We should do the other pre-op tests soon, and a CT, > but are these tests enough to be sure that there is no cholestetatoma > on both sides. I know I will have to wait untill the surgery to find > out, but would like to have something to hold on.> > Thank you very much for this chance to explain all this. Just writing > about it in detail and letting it go off my chest made me feel a > little better. I would be happy to hear from other memebrs of the > group.> > sincerely> > Angelina>

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[Guest guest]

Okay Rich we've all heard you loud and clear now....

I've had earaches that had nothing to do with an infection, BUT did have everything to do with my TMJ/Bruxism......I take some pain reliever and it goes away.....I've even had one that was a symptom of a migraine attack.....No one to this day can tell me why during a migraine attack my ear started aching other than it may have been neuromuscular.....any ideas???????

Please remember that we all come here with questions based on our experiences, worries, fears, etc.....We've all been given different information by our different doctors.....So, no one here can be an expert in all areas, otherwise we'd all be specialists in this arena.....

I do believe you like the others bring valuable insight into this somewhat unclear medical condition. To date my husbands seen quite a few ENT's right here in Wichita, a place seemingly overcrowded with medical centers.....needless to say one guy wouldn't look at his ear, and only wanted to fix my husbands crooked nose.....Go Figure!!! Needless to say there's only one (1) doctor here with the skills and qualifications to take care of this and he won't take Tricare.....let alone look at my husbands ear.....I could add my opinion here, but choose to keep it to myself at this time.

Honestly what our kids are doing education/career wise just doesn't play here....I've had a lot of teachers in my life and each one had there own style, experience level, and discipline....But not a single one taught the same information let alone the same way.....By the way I've raised 3 sons, and have been my husbands non-medical attendant for over 20 yrs now.....so I know earaches, swimmers ear and now Chlosteatomas..........................

As I sit here right now My husband, the one with the C-toma, is trying to get someone to explain to him why he's suddenly suffering from a month plus headache accompanied by dizziness, unsteadiness, excessive thirst, pressure and pain behind the eyes and facial numbness accompanied by numbness all the way down the right side of his body......Could be anything, but we all, doctors, specialists, etc....keep coming back to the same conclusion, the C-toma has flared up again....In the meantime he's been tested for stroke, meningitis, viral infection, bacterial infection, and Migraines.....So to put it politely it's not cut & dried...otherwise this would be a routine surgery done in nearly ever hospital.......

In a nutshell, we don't all live in the same areas of the country/world, our experiences are as different as the doctors we deal with and their levels of expertise and skill....That's why we have this forum.....

Like I said earlier you along with everyone else here brings valuable insight to this condition....

therefore we have to respect eachother at all times.....

Let's Keep it Real, but not Too Real...........

Re: possible cholesteatoma

Kazzy,Everyone that I know of who's doctor/surgeon suspected a ctoma had aCT to confirm it. A CT can show the size and extent of the ctoma. Granted, in some "rare" cases, a ctoma doesn't show up on a CT;nonetheless, a CT "is" the norm when diagnosing and/or confirming actoma. Tell me Kazzy, if most ctomas show up on a CT, how does adoctor know the size and extend of the ctoma without using one?Yes, the normal procedure when a ctoma is confirmed is to remove it,then rebuild. You know, as well as I, that a surgeon doesn't knowexactly what they are dealing with until they go in. What started offas a CWU procedure may end up being a CWD or both. Needless to say,it makes no sense to rebuild an ear drum, then have to tear it down toremove the ctoma. It makes a whole lot more sense the remove thectoma first and do the tympanoplasty at the same time and/or later. Doing a tympanoplasty first with the possibility of

tearing it apartmakes no sense.How many children do you have Kazzy? I have two girls, one is 28 andgoing to UC Berkeley on a scholarship in microbiology and the other is23 who has provided my wife and I with two grandchildren. Needless tosay, I have a lot of experience with children's aches and pains. Whenever my children and/or grandchildren had an ear ache, it wascaused by an ear infection 100% of the time, which antibiotics clearedup without rupturing their ear drums....period! You can bring up allthe variables in the world; however, Angelina was talking about her"child," not an adult. Bringing up TMJ, viral infections, teething aspossible causes of ear aches is just being argumentative. If youwould have read the original post thoroughly, you would have knownAngelina's child is 7 year old, a little beyond the teething stagedon't you think?Look over the majority of the posts on this site and you'll find

apattern. The pattern being most, if not all, confirmed ctomas wereoriginally missed by a GP; in fact, mine was too. With so many misseddiagnosis, was it practical for me to say to go to an ENT fortreatment rather than a GP, absolutely! In my case, if I had notsought out ENT for my hearing loss that my GP attributed to "age" andbeing in construction industry during my youth, I would be in somevery serious health issues by now. Remember, my ctoma had eaten awaymy skull and exposed brain matter. As a result, do I think ENT'sshould handle ALL ear problems? I think you know the answer! Readingthe experiences on this site, I think it irresponsible not torecommend an ENT for any ear aliment. Like eyes and limbs, were onlyborn with two ears, why not take care of them with the best doctorpossible!Kazzy, are you being seen as nit picking? Hmmm........ .. "Beingaccurate, correctly and informatively" is one thing; yet,

you claim myreply to Angelina was "excessive." WOW! I stand by my reply toAngelina as expressed above as being accurate, correct and informativeas based on my experiences, others experience and education. If youdisagree, then that's your prerogative.Rich> >> > Hello everyone,> > > > I wanted to join you since I have found out that this group has > > helped many to go through some tough times in the their lives. I am > > not panicing yet, but as I learn more about my sons's medical > >

condition, I am getting more worried about possible outcomes. Iwould > > appreciate if any of you had similar experience and would sharethem > > with me.> > > > My family lives in Bosnia and Herzegovina, in Tuzla (population 150 > > 000).My son Memo has always been a very healthy boy. He is 7now, and > > has't even had a cold since he was in kindergarten. we neverthought > > that he could be seriously ill. We did go twice (back in 2005)to see > > a specialist because we suspected that he doesn't hear well, butthe > > doctor said that it is a quite normal audiogram for a child if he > > has a cold. He treated it with antibioics and order new testsonly if > > he gets an earache or something. > > > > Anyway, around New Years he first had an earache. We took him to a > > pediatrician who recommended an otologist

who just gave him some > > antibiotics and ordered audiogram. The pain went off the same day > > any the child was OK, but we did some more hearing tests. Now wehave > > a total of 5 audiograms and they all show that his hearing is a > > little worse then normal (25-35dB). > > > > He has no other signs of disease and seems a healthy boy. However, > > since I wanted to be sure we took him to a best doctor in Tuzla(who > > has a private ofice in Tuzla, and doesn't perform surgeries any > > more). > > > > He checked him and reffered us to Zagreb, Croatia to Dr. BorisPegan. > > He was the first one to notice that my son has a condition more > > serious than we tought. He said that Memo basically has not ear > > drums (both sides). They were perforated and never healed back. > > Instead, the membrane formed and it is

functioning like an eardrum. > > That is good for his hearing and speech development, but on theother > > side, this membrane is constantly glued to ear bones (this is why > > they are rigid). > > > > The doctor looked everything through the microscope and believesthat > > there is a cholesteatoma behind this membrane in the right ear, but > > is not sure how big it is. He recomended tympanoplasty ASAP.Since it > > has to be done six months apart, we are scheduled for May 9th(right > > ear) and then again in November. Also his left ear seems to be free > > of C-toma, but he can't be sure untill they open it up. > > > > I have so many questions now. It worries me the most that he has > > problems with both ears and it increases the possibilities of > > complications. We should do the other pre-op tests soon, and a

CT, > > but are these tests enough to be sure that there is nocholestetatoma > > on both sides. I know I will have to wait untill the surgery tofind > > out, but would like to have something to hold on.> > > > Thank you very much for this chance to explain all this. Justwriting > > about it in detail and letting it go off my chest made me feel a > > little better. I would be happy to hear from other memebrs of the > > group.> > > > sincerely> > > > Angelina> >> > > > > > > --> This email has been verified as Virus free> Virus Protection and more available at http://www.plus. net> > > > >------------ --------- --------- --------- --------- --------- -> >

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Hi Rich

I had a CT scan in an effort to confirm cholesteatoma. Sadly, the surgeon reported the scan was a fat lot of good to him; I guess he found out the size and extent of the tumour during the surgery - he must have done pretty well as he seems to have got rid of the monster.

It seems only fair to point out that that 'tympanoplasty' appears to be a term that is used loosely and interchangeably by doctors when they are discussing any of the following: tympanoplasty, myringoplasty, ossiculoplasty, mastoidectomy. The fact that Angelina's son's doctor expressed a desire to carry out a tympanoplasty as soon as possible would, from what I have read, seem to be correct medical practice in attempting to remove the cholesteatoma.

In response to your comment, I didn't want to 'bring up all the variables in the world'; I merely wanted to point out rightfully that there are several different causes of ear pain, (be that in adults or children) and I did just that. Though you clearly feel differently, I believe that going to an ENT for any ear ailment is excessive, but maybe things are different over there than they are over here and maybe that's something that must be borne in mind when other members of the group read the posts of this group.

Kazzy :-)

Re: possible cholesteatoma

Kazzy,Everyone that I know of who's doctor/surgeon suspected a ctoma had aCT to confirm it. A CT can show the size and extent of the ctoma. Granted, in some "rare" cases, a ctoma doesn't show up on a CT;nonetheless, a CT "is" the norm when diagnosing and/or confirming actoma. Tell me Kazzy, if most ctomas show up on a CT, how does adoctor know the size and extend of the ctoma without using one?Yes, the normal procedure when a ctoma is confirmed is to remove it,then rebuild. You know, as well as I, that a surgeon doesn't knowexactly what they are dealing with until they go in. What started offas a CWU procedure may end up being a CWD or both. Needless to say,it makes no sense to rebuild an ear drum, then have to tear it down toremove the ctoma. It makes a whole lot more sense the remove thectoma first and do the tympanoplasty at the same time and/or later. Doing a tympanoplasty first with the possibility of tearing it apartmakes no sense.How many children do you have Kazzy? I have two girls, one is 28 andgoing to UC Berkeley on a scholarship in microbiology and the other is23 who has provided my wife and I with two grandchildren. Needless tosay, I have a lot of experience with children's aches and pains. Whenever my children and/or grandchildren had an ear ache, it wascaused by an ear infection 100% of the time, which antibiotics clearedup without rupturing their ear drums....period! You can bring up allthe variables in the world; however, Angelina was talking about her"child," not an adult. Bringing up TMJ, viral infections, teething aspossible causes of ear aches is just being argumentative. If youwould have read the original post thoroughly, you would have knownAngelina's child is 7 year old, a little beyond the teething stagedon't you think?Look over the majority of the posts on this site and you'll find apattern. The pattern being most, if not all, confirmed ctomas wereoriginally missed by a GP; in fact, mine was too. With so many misseddiagnosis, was it practical for me to say to go to an ENT fortreatment rather than a GP, absolutely! In my case, if I had notsought out ENT for my hearing loss that my GP attributed to "age" andbeing in construction industry during my youth, I would be in somevery serious health issues by now. Remember, my ctoma had eaten awaymy skull and exposed brain matter. As a result, do I think ENT'sshould handle ALL ear problems? I think you know the answer! Readingthe experiences on this site, I think it irresponsible not torecommend an ENT for any ear aliment. Like eyes and limbs, were onlyborn with two ears, why not take care of them with the best doctorpossible!Kazzy, are you being seen as nit picking? Hmmm.......... "Beingaccurate, correctly and informatively" is one thing; yet, you claim myreply to Angelina was "excessive." WOW! I stand by my reply toAngelina as expressed above as being accurate, correct and informativeas based on my experiences, others experience and education. If youdisagree, then that's your prerogative.Rich> >> > Hello everyone,> > > > I wanted to join you since I have found out that this group has > > helped many to go through some tough times in the their lives. I am > > not panicing yet, but as I learn more about my sons's medical > > condition, I am getting more worried about possible outcomes. Iwould > > appreciate if any of you had similar experience and would sharethem > > with me.> > > > My family lives in Bosnia and Herzegovina, in Tuzla (population 150 > > 000).My son Memo has always been a very healthy boy. He is 7now, and > > has't even had a cold since he was in kindergarten. we neverthought > > that he could be seriously ill. We did go twice (back in 2005)to see > > a specialist because we suspected that he doesn't hear well, butthe > > doctor said that it is a quite normal audiogram for a child if he > > has a cold. He treated it with antibioics and order new testsonly if > > he gets an earache or something. > > > > Anyway, around New Years he first had an earache. We took him to a > > pediatrician who recommended an otologist who just gave him some > > antibiotics and ordered audiogram. The pain went off the same day > > any the child was OK, but we did some more hearing tests. Now wehave > > a total of 5 audiograms and they all show that his hearing is a > > little worse then normal (25-35dB). > > > > He has no other signs of disease and seems a healthy boy. However, > > since I wanted to be sure we took him to a best doctor in Tuzla(who > > has a private ofice in Tuzla, and doesn't perform surgeries any > > more). > > > > He checked him and reffered us to Zagreb, Croatia to Dr. BorisPegan. > > He was the first one to notice that my son has a condition more > > serious than we tought. He said that Memo basically has not ear > > drums (both sides). They were perforated and never healed back. > > Instead, the membrane formed and it is functioning like an eardrum. > > That is good for his hearing and speech development, but on theother > > side, this membrane is constantly glued to ear bones (this is why > > they are rigid). > > > > The doctor looked everything through the microscope and believesthat > > there is a cholesteatoma behind this membrane in the right ear, but > > is not sure how big it is. He recomended tympanoplasty ASAP.Since it > > has to be done six months apart, we are scheduled for May 9th(right > > ear) and then again in November. Also his left ear seems to be free > > of C-toma, but he can't be sure untill they open it up. > > > > I have so many questions now. It worries me the most that he has > > problems with both ears and it increases the possibilities of > > complications. We should do the other pre-op tests soon, and a CT, > > but are these tests enough to be sure that there is nocholestetatoma > > on both sides. I know I will have to wait untill the surgery tofind > > out, but would like to have something to hold on.> > > > Thank you very much for this chance to explain all this. Justwriting > > about it in detail and letting it go off my chest made me feel a > > little better. I would be happy to hear from other memebrs of the > > group.> > > > sincerely> > > > Angelina> >> > > > > > > --> This email has been verified as Virus free> Virus Protection and more available at http://www.plus.net> > > > >----------------------------------------------------------> > > No virus found in this incoming message.> Checked by AVG Free Edition.> Version: 7.5.446 / Virus Database: 268.18.25/744 - Release Date:4/3/2007 5:32 AM>

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Dear Barbara,

Good luck with your sons' surgery. Was his Ctoma confirmed by CT prior to the recommended surgery? Our doctor in Zagreb hasn't requested that, although our local doctor said it would be good to do it. Anyway, in Tuzla, where I live, the CT machine is often out of function and I am not even sure we can do it.

My son is scheduled for the 9th of May.He will stay in hospital for a week. I am wondering if it's the same in the USA?? How long will your son stay? and have they told him already how long is the recovery gonna last?

I am sory I can's check mail more often, but I don't have Internet a home, so am I always a bit late.

Re: possible cholesteatoma

---Hi Angelina, it has helped my panic a lot talking with people on this web site. They are great! I wish the best for you & your son. My 20 year old son is going to have 1st surgery in 2 weeks .Best wishes, Barbara >

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[Guest guest]

HI Rick

and thanks for the note. You are right. It will not be tympanoplasty first, but in the end. I missinterpreted what the doctor said at first. The local doctor who reffered us to Zagreb explained that once they start the sugery they will know for sure if it is a Ctoma and how big it is. He also said that they will probably leave the ear "open" until they are sure that everything is clear and Ctoma is not back. Our local doctor also said that this Ctoma if it is there is probably very small, but yours was invasive and the hearing loss was not significant?!. Who knows.

The doctor requested to do a series of tests prior to coming to hospital, but did not order a ct. I am not even sure if we can do in here in our town, because the equiment is out of function more often than not. Do you think I should insist on having a CT? I thought they are not that reliable, since sometimes fluid may look the same like Ctoma??

I don't know much about medicine, and not being a native English speaker also doesn't help. right now we have two doctor both ENT specialists and one of them we saw only once after six hours drive to Zagreb. The one in Tuzla is a very good doctor but has retired and doesn't work in the hospital any more (only twice a week in a small private office). They describe the condition in Bosnian, Croatian and Latin and most info I can find are in English. You can imagine how confusing everything is.

From what I could see you seem to know a lot about this. What happens when they remove Ctoma and leave the ear open? My son has this membrane that has grown after the ruputure of the ear drums. i assume they will remove this memebrane and whatever is behind it and shouldn't be there. Have you ever heard something like that? Doctors (ENT specialists) in Tuzla hospital have many times loked his ears and always assumed that this "secundary membrane" was the ear drum. Additionally he never experioenced any pain, until January this year and it anly lasted for a few hours (after which it was probably ruptured and he felt better). And it's the same with the left ear, except that they think there is no Ctoma behind this membrane.

i will appreciate your opinion and experience. How is your hearing now and do you have any other problems? How long has it been since your surgery?? was it just one ear or both??

Thank you for everythng.

Angelina

Re: possible cholesteatoma

Hi Angelina,If your doctor sees a "possible" ctoma in your son's right ear, why ishe recommending a tympanoplasty ASAP? It seems to me your son shouldhave a CT to confirm an actual ctoma and its size first. If a ctomais confirmed, the surgeon may need to go through the ear drum toremove it, which makes a tympanoplasty uneccessary as the first roundof treatment. Read prior posts and you'll see a pattern. Confirmeddiagnosis first; ctoma removal and then repair of the ear drum and/orhearing bones. Doing the tympanoplasty before a ctoma removal makesno sense what so ever. While the hearing loss you son is experiencingis probably from the ruptured ear drums, it can also be from a ctoma.Your son's hearing loss is exactly the same as mine before a veryinvasive ctoma was removed. Here's some food for thought, especiallyin children. An ear ache is a sign of an ear infection (ottis media)behind the ear drum. If left

untreated, the infection/pus will builduntil it ruptures the ear drum, which is when the person affected getsrelief; however, if the ear ache was untreated, the ear drum is almostsure to be ruptured. Needless to say, anyone experiencing an ear acheshould go to an ENT doctor immediately!Rich >> Hello everyone,> > I wanted to join you since I have found out that this group has > helped many to go through some tough times in the their lives. I am > not panicing yet, but as I learn more about my sons's medical > condition, I am getting more worried about possible outcomes. I would > appreciate if any of you had similar experience and would share them > with me.> > My family lives in Bosnia and

Herzegovina, in Tuzla (population 150 > 000).My son Memo has always been a very healthy boy. He is 7 now, and > has't even had a cold since he was in kindergarten. we never thought > that he could be seriously ill. We did go twice (back in 2005) to see > a specialist because we suspected that he doesn't hear well, but the > doctor said that it is a quite normal audiogram for a child if he > has a cold. He treated it with antibioics and order new tests only if > he gets an earache or something. > > Anyway, around New Years he first had an earache. We took him to a > pediatrician who recommended an otologist who just gave him some > antibiotics and ordered audiogram. The pain went off the same day > any the child was OK, but we did some more hearing tests. Now we have > a total of 5 audiograms and they all show that his hearing is a > little worse then normal (25-35dB). >

> He has no other signs of disease and seems a healthy boy. However, > since I wanted to be sure we took him to a best doctor in Tuzla (who > has a private ofice in Tuzla, and doesn't perform surgeries any > more). > > He checked him and reffered us to Zagreb, Croatia to Dr. Boris Pegan. > He was the first one to notice that my son has a condition more > serious than we tought. He said that Memo basically has not ear > drums (both sides). They were perforated and never healed back. > Instead, the membrane formed and it is functioning like an ear drum. > That is good for his hearing and speech development, but on the other > side, this membrane is constantly glued to ear bones (this is why > they are rigid). > > The doctor looked everything through the microscope and believes that > there is a cholesteatoma behind this membrane in the right ear, but > is

not sure how big it is. He recomended tympanoplasty ASAP. Since it > has to be done six months apart, we are scheduled for May 9th (right > ear) and then again in November. Also his left ear seems to be free > of C-toma, but he can't be sure untill they open it up. > > I have so many questions now. It worries me the most that he has > problems with both ears and it increases the possibilities of > complications. We should do the other pre-op tests soon, and a CT, > but are these tests enough to be sure that there is no cholestetatoma > on both sides. I know I will have to wait untill the surgery to find > out, but would like to have something to hold on.> > Thank you very much for this chance to explain all this. Just writing > about it in detail and letting it go off my chest made me feel a > little better. I would be happy to hear from other memebrs of the >

group.> > sincerely> > Angelina>

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Hi Angelina,

A CT scan will not always detect a CTOMA. Unfortunately the only sure means of diagnosis is for the Surgeon to look and see for himself.

Hope your son does well.

Ingrid

Re: possible cholesteatoma

Hi Angelina,If your doctor sees a "possible" ctoma in your son's right ear, why ishe recommending a tympanoplasty ASAP? It seems to me your son shouldhave a CT to confirm an actual ctoma and its size first. If a ctomais confirmed, the surgeon may need to go through the ear drum toremove it, which makes a tympanoplasty uneccessary as the first roundof treatment. Read prior posts and you'll see a pattern. Confirmeddiagnosis first; ctoma removal and then repair of the ear drum and/orhearing bones. Doing the tympanoplasty before a ctoma removal makesno sense what so ever. While the hearing loss you son is experiencingis probably from the ruptured ear drums, it can also be from a ctoma.Your son's hearing loss is exactly the same as mine before a veryinvasive ctoma was removed. Here's some food for thought, especiallyin children. An ear ache is a sign of an ear infection (ottis media)behind the ear drum. If left untreated, the infection/pus will builduntil it ruptures the ear drum, which is when the person affected getsrelief; however, if the ear ache was untreated, the ear drum is almostsure to be ruptured. Needless to say, anyone experiencing an ear acheshould go to an ENT doctor immediately!Rich >> Hello everyone,> > I wanted to join you since I have found out that this group has > helped many to go through some tough times in the their lives. I am > not panicing yet, but as I learn more about my sons's medical > condition, I am getting more worried about possible outcomes. I would > appreciate if any of you had similar experience and would share them > with me.> > My family lives in Bosnia and Herzegovina, in Tuzla (population 150 > 000).My son Memo has always been a very healthy boy. He is 7 now, and > has't even had a cold since he was in kindergarten. we never thought > that he could be seriously ill. We did go twice (back in 2005) to see > a specialist because we suspected that he doesn't hear well, but the > doctor said that it is a quite normal audiogram for a child if he > has a cold. He treated it with antibioics and order new tests only if > he gets an earache or something. > > Anyway, around New Years he first had an earache. We took him to a > pediatrician who recommended an otologist who just gave him some > antibiotics and ordered audiogram. The pain went off the same day > any the child was OK, but we did some more hearing tests. Now we have > a total of 5 audiograms and they all show that his hearing is a > little worse then normal (25-35dB). > > He has no other signs of disease and seems a healthy boy. However, > since I wanted to be sure we took him to a best doctor in Tuzla (who > has a private ofice in Tuzla, and doesn't perform surgeries any > more). > > He checked him and reffered us to Zagreb, Croatia to Dr. Boris Pegan. > He was the first one to notice that my son has a condition more > serious than we tought. He said that Memo basically has not ear > drums (both sides). They were perforated and never healed back. > Instead, the membrane formed and it is functioning like an ear drum. > That is good for his hearing and speech development, but on the other > side, this membrane is constantly glued to ear bones (this is why > they are rigid). > > The doctor looked everything through the microscope and believes that > there is a cholesteatoma behind this membrane in the right ear, but > is not sure how big it is. He recomended tympanoplasty ASAP. Since it > has to be done six months apart, we are scheduled for May 9th (right > ear) and then again in November. Also his left ear seems to be free > of C-toma, but he can't be sure untill they open it up. > > I have so many questions now. It worries me the most that he has > problems with both ears and it increases the possibilities of > complications. We should do the other pre-op tests soon, and a CT, > but are these tests enough to be sure that there is no cholestetatoma > on both sides. I know I will have to wait untill the surgery to find > out, but would like to have something to hold on.> > Thank you very much for this chance to explain all this. Just writing > about it in detail and letting it go off my chest made me feel a > little better. I would be happy to hear from other memebrs of the > group.> > sincerely> > Angelina>

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