Re: possible cholesteatoma

[Guest guest]

Hi Angelina,

If your doctor sees a " possible " ctoma in your son's right ear, why is

he recommending a tympanoplasty ASAP? It seems to me your son should

have a CT to confirm an actual ctoma and its size first. If a ctoma

is confirmed, the surgeon may need to go through the ear drum to

remove it, which makes a tympanoplasty uneccessary as the first round

of treatment. Read prior posts and you'll see a pattern. Confirmed

diagnosis first; ctoma removal and then repair of the ear drum and/or

hearing bones. Doing the tympanoplasty before a ctoma removal makes

no sense what so ever. While the hearing loss you son is experiencing

is 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 very

invasive ctoma was removed. Here's some food for thought, especially

in children. An ear ache is a sign of an ear infection (ottis media)

behind the ear drum. If left untreated, the infection/pus will build

until it ruptures the ear drum, which is when the person affected gets

relief; however, if the ear ache was untreated, the ear drum is almost

sure to be ruptured. Needless to say, anyone experiencing an ear ache

should 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

>

[Guest guest]

Angelina,

First off welcome to the group.....we all hope that the experiences shared here, will not only help you make wise decisions, but will also provide you with a "sounding board" for your concerns and experiences....

I have no absolute advice regarding your son. It appears your son has a rare condition all the way around.

If you feel the need to seek additional medical advice or tests then do so....I don't know what your country offers in the way of medical help, but if you can afford it, and more importantly feel the need, seek it out.

Sounds like you got lucky with your most recent doctor. He sounds like the best there is to have been able to discover this condition and have diagnosed it. I would imagine he will prescribe tests and procedures as required. I would however, ask him these same questions if you've not already done so.....

From my experience with my husband most C-tomas do not present symptoms, painful or otherwise, right away if at all. He carried his for nearly 10 years before it was finally, officially, diagnosed.....in the interim he had earaches, and some headaches, but it was the "whistling" along with "ringing" in his ears that helped force the diagnosis.....right now we're battling an infection in his head, which we believe to be related to his ear problems, a constant headache, and mild numbness......otherwise his ear looks clean and healthy.....

As I'm sure you've come to learn by now for every similarity with each case there are just as many differences most of which are based on the individuals health, age, and history.....Therefore, I encourage you to read, question and make your own decisions.....Hopefully your sons outcome will be a positive one...

Please keep us posted.......

possible cholesteatoma

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.sincerelyAngelina

Don't get soaked. Take a quick peek at the forecast with the Search weather shortcut.

[Guest guest]

Kazzy,

Everyone that I know of who's doctor/surgeon suspected a ctoma had a

CT 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 a

ctoma. Tell me Kazzy, if most ctomas show up on a CT, how does a

doctor 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 know

exactly what they are dealing with until they go in. What started off

as 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 to

remove the ctoma. It makes a whole lot more sense the remove the

ctoma first and do the tympanoplasty at the same time and/or later.

Doing a tympanoplasty first with the possibility of tearing it apart

makes no sense.

How many children do you have Kazzy? I have two girls, one is 28 and

going to UC Berkeley on a scholarship in microbiology and the other is

23 who has provided my wife and I with two grandchildren. Needless to

say, I have a lot of experience with children's aches and pains.

Whenever my children and/or grandchildren had an ear ache, it was

caused by an ear infection 100% of the time, which antibiotics cleared

up without rupturing their ear drums....period! You can bring up all

the variables in the world; however, Angelina was talking about her

" child, " not an adult. Bringing up TMJ, viral infections, teething as

possible causes of ear aches is just being argumentative. If you

would have read the original post thoroughly, you would have known

Angelina's child is 7 year old, a little beyond the teething stage

don't you think?

Look over the majority of the posts on this site and you'll find a

pattern. The pattern being most, if not all, confirmed ctomas were

originally missed by a GP; in fact, mine was too. With so many missed

diagnosis, was it practical for me to say to go to an ENT for

treatment rather than a GP, absolutely! In my case, if I had not

sought out ENT for my hearing loss that my GP attributed to " age " and

being in construction industry during my youth, I would be in some

very serious health issues by now. Remember, my ctoma had eaten away

my skull and exposed brain matter. As a result, do I think ENT's

should handle ALL ear problems? I think you know the answer! Reading

the experiences on this site, I think it irresponsible not to

recommend an ENT for any ear aliment. Like eyes and limbs, were only

born with two ears, why not take care of them with the best doctor

possible!

Kazzy, are you being seen as nit picking? Hmmm.......... " Being

accurate, correctly and informatively " is one thing; yet, you claim my

reply to Angelina was " excessive. " WOW! I stand by my reply to

Angelina as expressed above as being accurate, correct and informative

as based on my experiences, others experience and education. If you

disagree, 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. 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]

---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

>

[Guest guest]

Hi Angelina

My only advice to you is follow your gut, my son only had a blocked

nose like a head cold he NO EAR ACHE or discharge.[He had always had

problems hearing and had 3 x gromits in both ears] I took him ENT but

was told it was glue ear.But after 3 months he found a polyp that

came back 4 days after it was removed.He then had a CT scan that

showed we had a cholesteatoma. He has had 11 op's since June 2005

with this cholesteatoma Removed 2 times.He has lost the hearing now

in his Left ear and his right has a tube to help keep it healthy.We

are doing very well at the moment apart from head aches which they

say are normal. My point to you is find a Doctor that you can Trust

go with that gut feeling and don't stop.If I had not listen to my gut

I don't know where we would be now as it was not just a runny nose or

a head cold.I have also found the best help at the childerns Hospital

they listen to us more than the ENT.I hope you have a good childrens

hospital there.Please have a CT scan what harm can it do.I wish you

the best of luck and good health. I know how you are feeling.

Viv

>

> 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

>

[Guest guest]

thanks for the support and welcome. My son will have a surgery on May 9th and I should be back to Bosnia a week or two after that to let you all know how it went and maybe help someone else.

You are all very nice and it's good to be able to find out more about it.

After I read all the messages here I am relieved and my hopes are up. My son is only 7, and he's never had any pain until this year, so I want to think that his Ctoma cannot be a big one.

I hope your husband will get better and the symptoms will decrease.

I understood that he only had a problem with one ear?? How is his hearing now?? How long was the recovery after the surgery?? How serious is the infection you are still fighting??

I would like to keep in touch. I don't always have Internet access, so I apologize if sometimes I don't reply right away.

Thank you again

Angelina

possible cholesteatoma

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.sincerelyAngelina

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