congenital c-tomas

[Guest guest]

My daughter had PE tubes at 10 months and then again at 2 years. She never had a ear infection after that till age 8 then we found the C-toma we just scheduled our 4th surgery for next month and will see how it goes. So not sure how it came up of if it is congenital. A Good Credit Score is 700 or Above. See yours in just 2 easy steps!

[Guest guest]

Our son Marc, who is almost 4 never had a single symptom until both of his TM's ruptured and produced a bloody, waxy discharge for three days. No ear infections, no complaints of pain or pressure, no vertigo. We sought care from a specialist following a diagnosis of "swimmers ear" from the pediatrician that just didn't seem to fit the situation. The only symptom Marc presented with that seemed to really be the tipoff was the hearing loss. Our ENT at Children's Hospital said he could count on one hand the children with cholestatomas to the extent of Marc's. (He has bilateral congenital disease.)He never was a waxy kid though.

We are post surgery and reconstruction on the left side for 3 months and the right side for 2 months....patiently watching and waiting. Hearing test is in 2 weeks....Best of luck to you!

LoriA Good Credit Score is 700 or Above. See yours in just 2 easy steps!

[Guest guest]

My son had a congenital c-toma but it was misdiagnosed for almost a year

as ear infections and then fluid in the ear until removal at age 5. I

kept thinking how can he have an ear infection with no pain or other

symptoms?? He even passed a hearing screening at the doctors office!

Only one ear infection as a toddler, no extra ear wax.

Now that they made him a new eardrum he has ear wax buildup.

bethsdragon wrote:

>

> I'd like to hear from everyone who has a child whos c-toma is

> congenital (or anyone now grown that had one as a kid).

>

> I was reading stories and noticed alot of people stating that thier

> child had a lot of earwax. My son always had to have his ears cleared

> when we went for dr visits. Not flushed just scraped out. (never

> impacted that I know if)

>

> So now I am wondering....can we consider this a symptom? If nothing

> else it seems to be a common thing. Lets see how many had this before

> they were diagnosed.

>

>

[Guest guest]

You over thinking things, relax and let the DR's do their job. They will let you know what to do and when....

Tom Hansen

From: bethsdragon <bethsdragon@...>Subject: congenital c-tomascholesteatoma Date: Thursday, January 8, 2009, 10:53 AM

I'd like to hear from everyone who has a child whos c-toma is congenital (or anyone now grown that had one as a kid).I was reading stories and noticed alot of people stating that thier child had a lot of earwax. My son always had to have his ears cleared when we went for dr visits. Not flushed just scraped out. (never impacted that I know if)So now I am wondering... .can we consider this a symptom? If nothing else it seems to be a common thing. Lets see how many had this before they were diagnosed.

[Guest guest]

Chloe never had earwax problems, and her doctor has decided hers was congenital. She never had an ear infection, either, until her eardrum burst because the ctoma was infected.

On Thu, Jan 8, 2009 at 1:26 PM, Tom Hansen <pingmn123@...> wrote:

You over thinking things, relax and let the DR's do their job. They will let you know what to do and when....

Tom Hansen

From: bethsdragon <bethsdragon@...>Subject: congenital c-tomascholesteatoma

Date: Thursday, January 8, 2009, 10:53 AM

I'd like to hear from everyone who has a child whos c-toma is congenital (or anyone now grown that had one as a kid).I was reading stories and noticed alot of people stating that thier child had a lot of earwax. My son always had to have his ears cleared

when we went for dr visits. Not flushed just scraped out. (never impacted that I know if)So now I am wondering... .can we consider this a symptom? If nothing else it seems to be a common thing. Lets see how many had this before

they were diagnosed.

[Guest guest]

I was diagnosed when I was 2 - and mine was either congenital or from tons of ear infections (which is congentital) - I have eustachian tube defect. Anywho, I can't confirm or deny the ear wax thing --- but if it makes you feel any better - I am 33 and happy and functioning in society fully even though my childhood was pretty lame because of c-toma. Glad your son has such a good mommy )

On Thu, Jan 8, 2009 at 1:15 PM, s <thequeen.christine@...> wrote:

Chloe never had earwax problems, and her doctor has decided hers was congenital. She never had an ear infection, either, until her eardrum burst because the ctoma was infected.

On Thu, Jan 8, 2009 at 1:26 PM, Tom Hansen <pingmn123@...> wrote:

You over thinking things, relax and let the DR's do their job. They will let you know what to do and when....

Tom Hansen

From: bethsdragon <bethsdragon@...>Subject: congenital c-tomascholesteatoma

Date: Thursday, January 8, 2009, 10:53 AM

I'd like to hear from everyone who has a child whos c-toma is congenital (or anyone now grown that had one as a kid).I was reading stories and noticed alot of people stating that thier child had a lot of earwax. My son always had to have his ears cleared

when we went for dr visits. Not flushed just scraped out. (never impacted that I know if)So now I am wondering... .can we consider this a symptom? If nothing else it seems to be a common thing. Lets see how many had this before

they were diagnosed.

-- })i({ Melinda Kaye Spille })i({

Very Proud Wife of Captain " Big Al " Super Blessed Mommy of Trinity, Emelia & TreyRomans 8:28, Ephesians 3:20(\__/) (='.'=) ( " )_( " )

[Guest guest]

From everything I've read, doctors can't decide on whether or not all

cholesteatoma should be considered acquired or if congenital

cholesteatoma is actually different. When the doctors stop squabbling

over it, then I guess we could move on from there. For the kids that go

through repeated surgeries, I believe they are classed as acquired at

that point.

Matt

Pam Bankston wrote:

>

> My daughter, Masie, has always had a lot of ear wax... even as a baby,

> but our doctor doesn't seem to think hers was a congenital thing. That

> hers was caused by the (I know I am going to get flamed for this)

> traditional way of an unresolved ear infection in the past one

> possibly 2 years that caused a small hole in her ear drum and well...

> you all know the story from there... same for everyone. It's very

> weird though, because her history presents itself as a severe ear

> infection, that I could actually SEE the ctoma at first and our ped.

> didn't know what it was and we tried multiple times to clean her ear

> out of the " infection " , etc... to no avail. We were sent to an ENT

> from there and he informed us that wheat we were seeing was the ctoma

> and then we went to the specialist. And here we are. As a small child

> (she's 6) she has had ear infections on and off, nothing that I would

> consider to major... like my youngest who ended up with tubes at 11 months

> because hers were chronic.

> So, that's just my take on the situation.

>

> Pamela Waling " smile, it confuses people... "

>

>

>

> > From: bethsdragon <bethsdragon@...

> <mailto:bethsdragon%40>>

> > Subject: congenital c-tomas

> > cholesteatoma

> <mailto:cholesteatoma%40>

> > Date: Thursday, January 8, 2009, 10:53 AM

> > I'd like to hear from everyone who has a child whos

> > c-toma is

> > congenital (or anyone now grown that had one as a kid).

> >

> > I was reading stories and noticed alot of people stating

> > that thier

> > child had a lot of earwax. My son always had to have his

> > ears cleared

> > when we went for dr visits. Not flushed just scraped out.

> > (never

> > impacted that I know if)

> >

> > So now I am wondering....can we consider this a symptom? If

> > nothing

> > else it seems to be a common thing. Lets see how many had

> > this before

> > they were diagnosed.

>

>

--

[Guest guest]

I've had minor cleaning issues with an in the canal aid - so, about once

every two years I'd have to take it back for a thorough cleaning. It

was fairly easy to maintain on a daily basis - especially for nimble

young fingers. They make little things (looks like a miniature band

aid) that you can put on the hearing aid to keep out wax, but I always

found them to be quite uncomfortable.

My latest aid is a Behind the Ear aid and there are really no issues

with wax for it. It's a lot easier to clean.

Matt

nkungar@... wrote:

>

> My son's ctoma was congenital. He always had a lot of ear wax (and

> still does) that has to get removed so that the doctor can see in his

> ear. He also had a lot of ear infections since he was a baby. When

> he was still having them at age 4yo, that is when the pediatrician

> sent us to the ENT and the ctoma was diagnosed. He is now almost 7yo.

>

> Now that he has a hearing aid for the first time, I am wondering if

> the ear wax will cause problems. I'll have to wait and see. I don't

> put anything in his ear and I don't try to clean it out myself due to

> the reconstruction.

>

>

> Jan 8, 2009 05:39:21 PM, cholesteatoma

> <mailto:cholesteatoma > wrote:

>

> My daughter, Masie, has always had a lot of ear wax... even as a

> baby, but our doctor doesn't seem to think hers was a congenital

> thing. That hers was caused by the (I know I am going to get

> flamed for this) traditional way of an unresolved ear infection in

> the past one possibly 2 years that caused a small hole in her ear

> drum and well... you all know the story from there... same for

> everyone. It's very weird though, because her history presents

> itself as a severe ear infection, that I could actually SEE the

> ctoma at first and our ped. didn't know what it was and we tried

> multiple times to clean her ear out of the " infection " , etc... to

> no avail. We were sent to an ENT from there and he informed us

> that wheat we were seeing was the ctoma and then we went to the

> specialist. And here we are. As a small child (she's 6) she has

> had ear infections on and off, nothing that I would consider to

> major... like my youngest who ended up with tubes at 11 months

> because hers were chronic.

> So, that's just my take on the situation.

>

> Pamela Waling " smile, it confuses people... "

>

>

>

> > From: bethsdragon <

> <mailto:bethsdragon%40>bethsdragon@...>

> > Subject: congenital c-tomas

> > <mailto:bethsdragon%40>cholesteatoma

> > Date: Thursday, January 8, 2009, 10:53 AM

> > I'd like to hear from everyone who has a child whos

> > c-toma is

> > congenital (or anyone now grown that had one as a kid).

> >

> > I was reading stories and noticed alot of people stating

> > that thier

> > child had a lot of earwax. My son always had to have his

> > ears cleared

> > when we went for dr visits. Not flushed jus t scraped out.

> > (never

> > impacted that I know if)

> >

> > So now I am wondering....can we consider this a symptom? If

> > nothing

> > else it seems to be a common thing. Lets see how many had

> > this before

> > they were diagnosed.

>

> <mailto:cholesteatoma%40>

>

> <mailto:cholesteatoma%40>

>

> <mailto:cholesteatoma%40>

>

--

[Guest guest]

Daughter, now 15 I suspect congetital c-toma. lots of ear infections but not

earwax. Sallie

____________________________________________________________

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[Guest guest]

My daughter's was congenital. Hers was found when she failed a hearing screening in preschool. She has never had an ear infection or excess ear wax. She did have a hard time with articulation when she was learning to speak but that corrected itself when she was 2 so we never suspected that she was not hearing, until she failed the screening. She did have terible balance problems. When near water she would fall in leading to some scary moments. That stopped after her first surgery at age 5.

Sadly, after looking at the pediatricians notes from her first five years, he noted left ear congestion on every visit, but did not tell us what he was seeing and did not know that he was looking at a c-toma.

[Guest guest]

Coming from someone who had this, I believe either your going to get it or not. It comes from dis-functional tubes whether your born that way or not. If you have good tubes you likely not to get c-toma. I also hole heartily believe the quailty of your care by the right Dr is so important. Otologist's are the way to go to treat this in today's world, if you going to just an ENT then you begging for excess operations. Granted there will be some tuff cases that seem never to get cured but you will see that less often if more would go to the Otologist from the get go....

Tom Hansen

From: emsguy54@... <emsguy54@...>Subject: Re: congenital c-tomascholesteatoma Date: Thursday, January 8, 2009, 1:54 PM

My daughter had PE tubes at 10 months and then again at 2 years. She never had a ear infection after that till age 8 then we found the C-toma we just scheduled our 4th surgery for next month and will see how it goes. So not sure how it came up of if it is congenital.

A Good Credit Score is 700 or Above. See yours in just 2 easy steps!

[Guest guest]

My Daughter Katys C-toma is Cogenital. The Dr. told me that they knew it was cogenital because of its location and where it started. Also she had no history of infections(1 infection at the age of 1). We found it when she failed her Preschool hearing screening. She has been in speech therapy since one week ater her 2nd birthday(She just turned 4) and I think that it was related to the hearing loss we were unaware of. She has had major wax in her ear. When I would take her in for her well childs they always had to clean it out to get a look at the ear drum. I didn't think anything of it since all three of my girls have had that problem. Hope that helps.

Steph I> From: bethsdragon <bethsdragon>> Subject: congenital c-tomas> cholesteatoma> Date: Thursday, January 8, 2009, 10:53 AM> I'd like to hear from everyone who has a child whos> c-toma is > congenital (or anyone now grown that had one as a kid).> > I was reading stories and noticed alot of people stating> that thier

> child had a lot of earwax. My son always had to have his> ears cleared > when we went for dr visits. Not flushed just scraped out.> (never > impacted that I know if)> > So now I am wondering... .can we consider this a symptom? If> nothing > else it seems to be a common thing. Lets see how many had> this before > they were diagnosed.

[Guest guest]

Well,

I am 38 and was just diagnosed last in October of 2007 with a c-toma in my left ear. When we did a ct scan we found that I also had one in my right ear. Anyways, the one in my right ear the dr said was congenital. There was actually some embrionic (sp) fluid in it. I never had any pain or excessive ear wax. In fact the dr had no idea there was anything wrong with that ear except for the hearing loss. I had allergies and sinus problems from the time I was 5 or 6. My mom took me to specialiest and nobody ever caught the c-toma. So, anyways, I had the one in my left ear removed first since it was pressing on my facial nerve causing paralysis. 6 months later I had the one removed from my right ear. They had to remove everything out of it because it was already inbetween the ear and the brain. Three months ago I had reconstruction surgery and a tube put in my left ear with a canal

wall down procedure.

The problem I'm having now is that my tube will not stay unstopped. I was at my otologist right before Christmas and he spent 30 minutes trying to unstop it. Idk if he ever got it unstopped or not but he told me to quit doing the ear drops and come back in 3 months. Then today I see my ENT and he says it's stopped up really bad. So, now I'm back on the drops again to try and loosen up all the dead skin and drainage that is blocking and have to get allergy tested too. Basically, my ENT said that if we can't get the tube to drain and get my allergies and sinuses under control then the c-toma is going to come back. Is this what everyone else thinks too?? Just curious!!

[Guest guest]

Jo,

That sounds like a reasonable prediction. We have had Chloe's tubes get blocked before, but the cipro or Floxin drops always do the trick for her. Do you have regular tubes or T-tubes? Maybe that makes a difference.

On Thu, Jan 8, 2009 at 9:20 PM, Jo Watters <tink442002@...> wrote:

Well,

I am 38 and was just diagnosed last in October of 2007 with a c-toma in my left ear. When we did a ct scan we found that I also had one in my right ear. Anyways, the one in my right ear the dr said was congenital. There was actually some embrionic (sp) fluid in it. I never had any pain or excessive ear wax. In fact the dr had no idea there was anything wrong with that ear except for the hearing loss. I had allergies and sinus problems from the time I was 5 or 6. My mom took me to specialiest and nobody ever caught the c-toma. So, anyways, I had the one in my left ear removed first since it was pressing on my facial nerve causing paralysis. 6 months later I had the one removed from my right ear. They had to remove everything out of it because it was already inbetween the ear and the brain. Three months ago I had reconstruction surgery and a tube put in my left ear with a canal wall down procedure.

The problem I'm having now is that my tube will not stay unstopped. I was at my otologist right before Christmas and he spent 30 minutes trying to unstop it. Idk if he ever got it unstopped or not but he told me to quit doing the ear drops and come back in 3 months. Then today I see my ENT and he says it's stopped up really bad. So, now I'm back on the drops again to try and loosen up all the dead skin and drainage that is blocking and have to get allergy tested too. Basically, my ENT said that if we can't get the tube to drain and get my allergies and sinuses under control then the c-toma is going to come back. Is this what everyone else thinks too?? Just curious!!

[Guest guest]

Jo,

Either kind of tube eventually falls out on its own, but the T-tubes tend to stay in longer (3-5 years). Other than that, I think they work about the same. Some seem to have larger openings, so I wonder if that would be helpful in your case?

On Fri, Jan 9, 2009 at 10:13 AM, Captain Definder <captaindefinder@...> wrote:

Jo,

I am 42 and January 2008 I had Bell's Palsy it wasn't until 6 months later it was discovered that I had a c-toma in my right ear. The physical appearance of my face recovered 100%, however, I still get twitching and strange sensations on the right side of my face which makes me wonder if the paralysis may return. Do you ever feel that way? I also suffer from disequalibrium on a daily basis (some days are better than others) which the doctor doesn't know why because the balance canal was okay (no c-toma). I am going to go to the allergist to get tested - I feel in my case that it is better to avoid anything that goes to the ear and I do have slight nasal/throat drainage always (which I have always felt wasn't a big deal). When I was a child the doctor did not put tubes in my ear he lanced my ears every week for a long period of time - as an adult I have not had any major ear infections I was aware of and have never had a problem with excessive ear wax. All I know is my body formed one c-toma it could form another so I will have regular doctors appointment without fail.

From: Jo Watters <tink442002@...>cholesteatoma

Sent: Thursday, January 8, 2009 8:20:06 PM

Subject: congenital c-tomas

Well,

I am 38 and was just diagnosed last in October of 2007 with a c-toma in my left ear. When we did a ct scan we found that I also had one in my right ear. Anyways, the one in my right ear the dr said was congenital. There was actually some embrionic (sp) fluid in it. I never had any pain or excessive ear wax. In fact the dr had no idea there was anything wrong with that ear except for the hearing loss. I had allergies and sinus problems from the time I was 5 or 6. My mom took me to specialiest and nobody ever caught the c-toma. So, anyways, I had the one in my left ear removed first since it was pressing on my facial nerve causing paralysis. 6 months later I had the one removed from my right ear. They had to remove everything out of it because it was already inbetween the ear and the brain. Three months ago I had reconstruction surgery and a tube put in my left ear with a canal wall down procedure.

The problem I'm having now is that my tube will not stay unstopped. I was at my otologist right before Christmas and he spent 30 minutes trying to unstop it. Idk if he ever got it unstopped or not but he told me to quit doing the ear drops and come back in 3 months. Then today I see my ENT and he says it's stopped up really bad. So, now I'm back on the drops again to try and loosen up all the dead skin and drainage that is blocking and have to get allergy tested too. Basically, my ENT said that if we can't get the tube to drain and get my allergies and sinuses under control then the c-toma is going to come back. Is this what everyone else thinks too?? Just curious!!

[Guest guest]

SANDY SMALL

From: Captain Definder <captaindefinder@...>Subject: Re: congenital c-tomascholesteatoma Date: Friday, January 9, 2009, 10:13 AM

Jo,

I am 42 and January 2008 I had Bell's Palsy it wasn't until 6 months later it was discovered that I had a c-toma in my right ear. The physical appearance of my face recovered 100%, however, I still get twitching and strange sensations on the right side of my face which makes me wonder if the paralysis may return. Do you ever feel that way? I also suffer from disequalibrium on a daily basis (some days are better than others) which the doctor doesn't know why because the balance canal was okay (no c-toma). I am going to go to the allergist to get tested - I feel in my case that it is better to avoid anything that goes to the ear and I do have slight nasal/throat drainage always (which I have always felt wasn't a big deal). When I was a child the doctor did not put tubes in my ear he lanced my ears every week for a long period of time - as an adult I have not had any major ear infections I was aware of

and have never had a problem with excessive ear wax. All I know is my body formed one c-toma it could form another so I will have regular doctors appointment without fail.

From: Jo Watters <tink442002@...>cholesteatoma Sent: Thursday, January 8, 2009 8:20:06 PMSubject: congenital c-tomas

Well,

I am 38 and was just diagnosed last in October of 2007 with a c-toma in my left ear. When we did a ct scan we found that I also had one in my right ear. Anyways, the one in my right ear the dr said was congenital. There was actually some embrionic (sp) fluid in it. I never had any pain or excessive ear wax. In fact the dr had no idea there was anything wrong with that ear except for the hearing loss. I had allergies and sinus problems from the time I was 5 or 6. My mom took me to specialiest and nobody ever caught the c-toma. So, anyways, I had the one in my left ear removed first since it was pressing on my facial nerve causing paralysis. 6 months later I had the one removed from my right ear. They had to remove everything out of it because it was already inbetween the ear and the brain. Three months ago I had reconstruction surgery and a tube put in my left ear with a canal

wall down procedure.

The problem I'm having now is that my tube will not stay unstopped. I was at my otologist right before Christmas and he spent 30 minutes trying to unstop it. Idk if he ever got it unstopped or not but he told me to quit doing the ear drops and come back in 3 months. Then today I see my ENT and he says it's stopped up really bad. So, now I'm back on the drops again to try and loosen up all the dead skin and drainage that is blocking and have to get allergy tested too. Basically, my ENT said that if we can't get the tube to drain and get my allergies and sinuses under control then the c-toma is going to come back. Is this what everyone else thinks too?? Just curious!!

TO WELL!!

so u have never had any pain what so ever...my ear and the bone behind my ear hurts like a muther f**** i cant do any thing cause the pressue is so bad in my ear i have to take 2 kinds of pain pills and then i still put ice packs on to help whats ur opinion with what my effects are i have never had any drainage the pain is the reason they found mine..

[Guest guest]

My son's world renown otologist/neurotologist told us the CONGENITAL

form of C-toma forms as the ear is forming. A few of the cells get

trapped behind the ear drum as the ear forms and they begin to grow. He

told us to imagine a door (being the ear drum) closing and as it closes

cells get trapped behind the door that shouldn't be there. The

congenital form is not tube related and is there before the baby is even

born.

Tom Hansen wrote:

>

> Coming from someone who had this, I believe either your going to get

> it or not. It comes from dis-functional tubes whether your born that

> way or not. If you have good tubes you likely not to get c-toma. I

> also hole heartily believe the quailty of your care by the right Dr is

> so important. Otologist's are the way to go to treat this in today's

> world, if you going to just an ENT then you begging for excess

> operations. Granted there will be some tuff cases that seem never to

> get cured but you will see that less often if more would go to the

> Otologist from the get go....

>

>

> Tom Hansen

>

>

>

> From: emsguy54@... <emsguy54@...>

> Subject: Re: congenital c-tomas

> cholesteatoma

> Date: Thursday, January 8, 2009, 1:54 PM

>

> My daughter had PE tubes at 10 months and then again at 2 years.

> She never had a ear infection after that till age 8 then we found

> the C-toma we just scheduled our 4th surgery for next month and

> will see how it goes. So not sure how it came up of if it is

> congenital.

>

>

>

> ------------------------------------------------------------------------

> *A Good Credit Score is 700 or Above. See yours in just 2 easy

> steps!

>

<http://pr.atwola.com/promoclk/100000075x1215047751x1200957972/aol?redir=http://\

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terNO62>*

>

>

>

[Guest guest]

I think I said that "It comes from dis-functional tubes whether your born that way or not.". And why do the cells get trapped behind the Ear Drum? Ahhhhhh....Bad tubes maybe? Hummmm, I guess things have not changed much in the 30 years I had this stuff.....And Judy, In my opinion your son is more qualifed to speak (even if he can't for himself) on this as he has had it, YOU have not! YOU have NO idea the pain that C-tomas cause's, your son and I do. And I do beleive YOU misunderstood what the Dr was saying as if the tubes where working correctly then the cell would be ejected on there own, after all that what they are there for. God did not put them there just to be there....Hummmmm, it's kind of neat how the human body works.....

Tom Hansen>> From: emsguy54aol (DOT) com <emsguy54aol (DOT) com>> Subject: Re: congenital c-tomas> cholesteatoma> Date: Thursday, January 8, 2009, 1:54 PM>> My daughter had PE tubes at 10 months and then again at 2 years.> She never had a

ear infection after that till age 8 then we found> the C-toma we just scheduled our 4th surgery for next month and> will see how it goes. So not sure how it came up of if it is> congenital.>>>> ------------ --------- --------- --------- --------- --------- -> *A Good Credit Score is 700 or Above. See yours in just 2 easy> steps!> <http://pr.atwola. com/promoclk/ 100000075x121504 7751x1200957972/ aol?redir= http://www. freecreditreport .com/pm/default. aspx?sc=668072% 26hmpgID= 62%26bcd= DecemailfooterNO 62>*>>>

[Guest guest]

Actually, you can have cholesteatoma without dysfunctional eustacian

tubes. The congenital disease is caused by a " screw up " during the

actual embroyology. The process is quite interesting if you are into

that sort of study, I suppose, but the reality of it is that there

are two very different conditions. It is my understanding that the

recurrant c-toma can be considered congenital OR acquired, depending

on the method of recurrance. If there is retraction or tube

dysfunction, that is an acquired tumor. A single cell left behind

during the removal of the c-toma leaves just more of the same

congenital situation. There is alot to be learned from the

literature that is out there. (Thanks !!) So sorry yours

caused so much pain, Tom. Perhaps kids perceive pain a little

differently as our Marc never even needed anything beyond an

occasional dose of tylenol.

> >

> > From: emsguy54aol (DOT) com <emsguy54aol (DOT) com>

> > Subject: Re: congenital c-tomas

> > cholesteatoma

> > Date: Thursday, January 8, 2009, 1:54 PM

> >

> > My daughter had PE tubes at 10 months and then again at 2 years.

> > She never had a ear infection after that till age 8 then we found

> > the C-toma we just scheduled our 4th surgery for next month and

> > will see how it goes. So not sure how it came up of if it is

> > congenital.

> >

> >

> >

> > ------------ --------- --------- --------- --------- --------- -

> > *A Good Credit Score is 700 or Above. See yours in just 2 easy

> > steps!

> > <http://pr.atwola. com/promoclk/ 100000075x121504

7751x1200957972/ aol?redir= http://www.

freecreditreport .com/pm/default. aspx?sc=668072% 26hmpgID= 62%26bcd=

DecemailfooterNO 62>*

> >

> >

> >

>

[Guest guest]

Thanks everyone for your responses. I guess I'll just have to ask my ENT what kind of tubes I have when I see him next week. So, I think basically what this means is that no

swimming for me for a very long time??? Just feeling a bit down about it all. I mean I know I have to deal with it the rest of my life I just think sometimes we all just let it get to us. Today is a better day and tomorrow will be even better

Thanks and chin up

JO

Jo,

Either kind of tube eventually falls out on its own, but the T-tubes tend to stay in longer (3-5 years). Other than that, I think they work about the same. Some seem to have larger openings, so I wonder if that would be helpful in your case?

On Fri, Jan 9, 2009 at 10:13 AM, Captain Definder <captaindefinder> wrote:

Jo,

I am 42 and January 2008 I had Bell's Palsy it wasn't until 6 months later it was discovered that I had a c-toma in my right ear. The physical appearance of my face recovered 100%, however, I still get twitching and strange sensations on the right side of my face which makes me wonder if the paralysis may return. Do you ever feel that way? I also suffer from disequalibrium on a daily basis (some days are better than others) which the doctor doesn't know why because the balance canal was okay (no c-toma). I am going to go to the allergist to get tested - I feel in my case that it is better to avoid anything that goes to the ear and I do have slight nasal/throat drainage always (which I have always felt wasn't a big deal). When I was a child the doctor did not put tubes in my ear he lanced my ears every week for a long period of time - as an adult I have not had any major ear infections I was aware of

and have never had a problem with excessive ear wax. All I know is my body formed one c-toma it could form another so I will have regular doctors appointment without fail.

From: Jo Watters <tink442002 (DOT) com>cholesteatomaSent: Thursday, January 8, 2009 8:20:06 PM

Subject: congenital c-tomas

Well,

I am 38 and was just diagnosed last in October of 2007 with a c-toma in my left ear. When we did a ct scan we found that I also had one in my right ear. Anyways, the one in my right ear the dr said was congenital. There was actually some embrionic (sp) fluid in it. I never had any pain or excessive ear wax. In fact the dr had no idea there was anything wrong with that ear except for the hearing loss. I had allergies and sinus problems from the time I was 5 or 6. My mom took me to specialiest and nobody ever caught the c-toma. So, anyways, I had the one in my left ear removed first since it was pressing on my facial nerve causing paralysis. 6 months later I had the one removed from my right ear. They had to remove everything out of it because it was already inbetween the ear and the brain. Three months ago I had reconstruction surgery and a tube put in my left ear with a canal

wall down procedure.

The problem I'm having now is that my tube will not stay unstopped. I was at my otologist right before Christmas and he spent 30 minutes trying to unstop it. Idk if he ever got it unstopped or not but he told me to quit doing the ear drops and come back in 3 months. Then today I see my ENT and he says it's stopped up really bad. So, now I'm back on the drops again to try and loosen up all the dead skin and drainage that is blocking and have to get allergy tested too. Basically, my ENT said that if we can't get the tube to drain and get my allergies and sinuses under control then the c-toma is going to come back. Is this what everyone else thinks too?? Just curious!!

[Guest guest]

You know what Jo, that's a great attitude to have and I wish more people had

that kind of attitude. You're right, keep your chin up, tomorrow can only be

better!

Pamela Waling " smile, it confuses people... "

>

>

>

>

> Jo,

>  

> I am 42 and January 2008 I had Bell's Palsy it

> wasn't until 6 months later it was discovered that I had

> a c-toma in my right ear.  The physical appearance of my

> face recovered 100%, however, I still get twitching and

> strange sensations on the right side of my face which makes

> me wonder if the paralysis may return.  Do you ever feel

> that way?  I also suffer from disequalibrium on a daily

> basis (some days are better than others) which the doctor

> doesn't know why because the balance canal was okay (no

> c-toma).  I am going to go to the allergist to get tested -

> I feel in my case that it is better to avoid anything that

> goes to the ear and I do have slight nasal/throat drainage

> always (which I have always felt wasn't a big deal). 

> When I was a child the doctor did not put tubes in my ear

> he lanced my ears every week for a long period of time - as

> an adult I have not had any major ear infections I was

> aware of and have never had a problem with

> excessive ear wax.  All I know is my body formed one

> c-toma it could form another so I will have regular doctors

> appointment without fail.

>  

>

>

>

>

>

>

>

>

>

> From: Jo Watters <tink442002 (DOT) com>

> cholesteatoma

> Sent: Thursday, January 8, 2009 8:20:06 PM

>

> Subject: congenital c-tomas

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Well,

>  I am 38 and was just diagnosed last in October of 2007

> with a c-toma in my left ear.  When we did a ct scan we

> found that I also had one in my right ear.  Anyways, the

> one in my right ear the dr said was congenital.  There was

> actually some embrionic (sp) fluid in it. I never had any

> pain or excessive ear wax.  In fact the dr had no idea

> there was anything wrong with that ear except for the

> hearing loss.   I had allergies and sinus problems from the

> time I was 5 or 6.  My mom took me to specialiest and

> nobody ever caught the c-toma.  So, anyways, I had the one

> in my left ear removed first since it was pressing on my

> facial nerve causing paralysis.  6 months later I had the

> one removed from my right ear.  They had to remove

> everything out of it because it was already inbetween the

> ear and the brain.  Three months ago  I had reconstruction

> surgery and a tube put in my left ear with a canal wall down

> procedure. 

> The problem I'm having now is that my tube will not

> stay unstopped.  I was at my otologist right before

> Christmas and he spent 30 minutes trying to unstop it.  Idk

> if he ever got it unstopped or not but he told me to quit

> doing the ear drops and come back in 3 months.  Then today

> I see my ENT and he says it's stopped up really bad. 

> So, now I'm back on the drops again to try and loosen up

> all the dead skin and drainage that is blocking and have to

> get allergy tested too.  Basically, my ENT said that if we

> can't get the tube to drain and get my allergies and

> sinuses under control then the c-toma is going to come

> back.  Is this what everyone else thinks too??  Just

> curious!!

>

>

>

>

>

>

>

>  

[Guest guest]

Yes, this is the prevailing theory. Most experts seem to agree. Here

is a readable article by Dr. Young (someone that has been mentioned on

this web site more than once) on congenital cholesteatoma:

http://www.childsdoc.org/fall2001/congenital.asp

Tube disfunction is a second way and the third way cholesteatoma is

believed to form is trauma to the ear drum - so keep the q-tips out of

your own and your children's ears. I know it's tough to resist, but let

the wax work its own way out. My doctor said the silly old saying about

nothing smaller than your elbows in your ear isn't so silly. I got it

backwards and said " larger " and we had a good laugh over keeping monster

trucks out of my ears as well. If I used that as a New Years

resolution, it's one I think I can keep. :-)

Judy Adkins wrote:

>

> My son's world renown otologist/neurotologist told us the CONGENITAL

> form of C-toma forms as the ear is forming. A few of the cells get

> trapped behind the ear drum as the ear forms and they begin to grow. He

> told us to imagine a door (being the ear drum) closing and as it closes

> cells get trapped behind the door that shouldn't be there. The

> congenital form is not tube related and is there before the baby is even

> born.

>

> Tom Hansen wrote:

> >

> > Coming from someone who had this, I believe either your going to get

> > it or not. It comes from dis-functional tubes whether your born that

> > way or not. If you have good tubes you likely not to get c-toma. I

> > also hole heartily believe the quailty of your care by the right Dr is

> > so important. Otologist's are the way to go to treat this in today's

> > world, if you going to just an ENT then you begging for excess

> > operations. Granted there will be some tuff cases that seem never to

> > get cured but you will see that less often if more would go to the

> > Otologist from the get go....

> >

> >

> > Tom Hansen

> >

> >

> >

> > From: emsguy54@... <mailto:emsguy54%40aol.com> <emsguy54@...

> <mailto:emsguy54%40aol.com>>

> > Subject: Re: congenital c-tomas

> > cholesteatoma

> <mailto:cholesteatoma%40>

> > Date: Thursday, January 8, 2009, 1:54 PM

> >

> > My daughter had PE tubes at 10 months and then again at 2 years.

> > She never had a ear infection after that till age 8 then we found

> > the C-toma we just scheduled our 4th surgery for next month and

> > will see how it goes. So not sure how it came up of if it is

> > congenital.

> >

> >

> >

> > ----------------------------------------------------------

> > *A Good Credit Score is 700 or Above. See yours in just 2 easy

> > steps!

> >

>

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> >

> >

> >

>

>

--

[Guest guest]

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[Guest guest]

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[Guest guest]

I will add my two cents to say that I have done extensive research regarding congenital vs acquired ctomas, and congenital ctomas are not thought to be caused by eustachian tube dysfunction, although it is not uncommon for these children to have ETD, as well, leading to possible subsequent Acquired ctomas. Like Lori said, that is one of the methods of recurrence in addition to simply missing a small amount of the original congenital mass.

At the end of the day, IT DOESN " T MATTER how the child got the ctoma in terms of treatment and outcomes. Once it is discovered, the treatments are the same--surgical intervention.

Additionally, on a personal note, I would ask, as a mom, that everyone remember how very involved the mother (and fathers, too) is in the care of a young child with this truly difficult condition, especially as pedi ctomas tend to be aggressive. It is often as hard on the parents as it is on the child, and there is no need in this support forum for minimizing anyone's right to speak regardless of whether that person or a loved one is the one suffering from ctoma. We are all affected.

Sincerely,

On Fri, Jan 9, 2009 at 5:49 PM, <nels4487@...> wrote:

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