RE: [Cholesteatoma] Re: Cholesteatoma surgery

[Guest guest]

Hello,

I am 52 years old and had my first

operation on the 21 December.

I have never had any ear problems at all

throughout my life, and it was early November 2005 when I noticed my hearing

suddenly decline. I went for a hearing test, and the let ear had dropped to

-85dB on the low notes !!

The 3.5 Hour operation was on the 21

December. C-toma was much bigger that the CT scan showed, and Surgeon said, It

was very very close to the brain, and had to place new bone material as the

original had been eaten away. My inner ear was saved, but one more month, and

it would have started to destroy that as well.

Middle ear was destroyed beyond repair.

This is really concerning, the surgeon stated

that she had never seen a case where the patient had not had previous ear

problems and/or no pain at all. She stated it probably started with a pin prick

whole I must have had unknowingly for many years in my ear drum.

I was wondering it anyone in the group has

had a similar experience, after having had no previous ear problems or pain.

Thank you

Adrien

Re: cholesteatoma

surgery

> >

> > Hi,

> >

> > I am happy that I just found this site!

I am 51 years old and I

> had my

> > first surgery to remove the cholesteatoma

from my left ear in June,

> > 2003. It ate one of my middle ear bones

so I have hearing loss from

> > that. The dr spoke about possible

reconstruction, but only if

> there's

> > no sign of the cholesteatoma after the

surgery. Everything went

> well

> > but I had a lot of pain from the mastoid

bone being cut away. He

> > actually laid the new tympanic membrane

over the two remaining

> bones

> > in hopes of increasing my hearing. It

actually worked...I still

> can't

> > hear highs or lows, but there was an

increase in the mid-range. H

> >

> > I see him every two months and he always

was cleaning " debris " out

> of

> > my ear. This was often unpleasant and

painful...especially when he

> > used the suction. One day, he took the

" debris " out and informed me

> > that it was the cholesteatoma growing

back! That was bad news. Time

> > passed and he continued to clean the ear

out. In October, he said

> he

> > felt I should have a CT scan because he

was afraid the

> cholesteatoma

> > was where he couldn't see it. He also

was concerned about my ear

> > canal. Scar tissue had taken over and it

was very difficult to fit

> the

> > otoscope and his instruments in there.

He wanted to cut away the

> scar

> > tissue.

> >

> > I had the surgery in December, 2005. He

had to cut out a lot of

> growth

> > again. He said it was all in the

cavity....even on the bone at the

> > top. He scraped it out and removed the

scar tissue from the ear

> canal.

> > Prior to the surgery, I asked about

reconstruction. He said it's

> > impossible as long as the infection is

present, and he fears the

> > growth is now a chronic condition for

me. The recovery was so

> > different with this surgery. I was able

to go back to work in one

> week

> > after the first surgery. This time, I

needed two full weeks to

> > recuperate. My face was swollen, my eye

was irritated and tearing,

> the

> > gland hurt, my stomach was sick, I felt

exhausted, and I was

> swollen

> > and sore in the surrounding ear area,

including the temple, cheek,

> > neck and back of the head. I took lots

of advil for pain. The dr

> > didn't think I needed anything stronger.

I took 600 mgs. I am still

> > having some discharge, but that's

normal. I go back next week and

> > we'll see what he has to say.

> >

> > I know it's scary, but you do get

through it. I was frightened

> when I

> > first heard about this. I was afraid of

nerve damage and not being

> > ablt to smile again. Hang in there! Good

luck to everyone!

> >

> > Kathy

> >

> Hi Kathy,, Jenine here,Just read your story

about the ctoma.I have

> had it since I was 8 and am now 44 and am

just getting over my last

> tumor, severe case makes me very ill for 9

months every time.just

> thought you might find it helpful to know

that you can remove scar

> tissue with out discomfort by peeling a small

onion and cooking it

> in a microwave in glad wrap for a minuit and

a half, cool it and put

> the root end against your ear as hot as you

can bear without burning

> yourself. bandage it to your ear for an hour.

once a day for a week

> and it will leave your ear with no scar

tissue. I have had 6

> operations and have removed the last three

tumors myself without

> surgery, there is a pattern to my disease , I

have had it twice 9

> yrs apart then twice 6 yrs apart and will

probably get it again in

> three years time. it took a top specialist in

Melbourne 6 years to

> get it under control when I was a child,and I

certainly can epathize

> with anyone that has this disease.I could

tell you so much much more

> but I dont want to impose on anyone who may

prefer to use the

> traditional treatment. I had to find natural

ways to fight the

> disease as they cant operate anymore without

causing facial

> paralasis and loss of balance. Kind regards, Jenine.

>

Hi, Jenine,

Thanks for writing to share your experiences. I am

sorry to hear you

have been through so much and that surgery is no

longer an option for

you. Please feel free to share anything you can

with me by emailing me

through the group or directly. How did you actually

remove a tumor

yourself?? I'm pretty sure I read another letter

from you that you did

it yourself, but maybe I'm mistaken. I appreciate

learning all that I

can. Good luck with everything and please keep in

touch!

Kathy

[Guest guest]

Hi, Adrien,That was true of me also. I had no pain, no infections and then, at age 53, I noticed quite a hearing loss in one ear (my usual phone ear).   I frequently had a problem with wax in that ear, and one day went to our nurse practioner at work to see if they could remove it as I was flying out of town and didn't want pain with that. She discovered the punctured eardrum and suggested I see a specialist. My c-toma wasn't quite a severe as yours - two middle ear bones destroyed and now replaced.  Between my two surgeries was the worst time for me.  One of my friends noticed a hearing loss in one of her ears recently and thought for sure she had a c-toma. It turns out she had two hairs growing which the doctor plucked and she is fine. But we all start getting pretty paranoid about our out of control bodies!Hope your recovery is going well.leOn Jan 6, 2006, at 2:06 AM, Adrien wrote:Hello, I am 52 years old and had my first operation on the 21 December. I have never had any ear problems at all throughout my life, and it was early November 2005 when I noticed my hearing suddenly decline. I went for a hearing test, and the let ear had dropped to -85dB on the low notes !! The 3.5 Hour operation was on the 21 December. C-toma was much bigger that the CT scan showed, and Surgeon said, It was very very close to the brain, and had to place new bone material as the original had been eaten away. My inner ear was saved, but one more month, and it would have started to destroy that as well. Middle ear was destroyed beyond repair. This is really concerning, the surgeon stated that she had never seen a case where the patient had not had previous ear problems and/or no pain at all. She stated it probably started with a pin prick whole I must have had unknowingly for many years in my ear drum. I was wondering it anyone in the group has had a similar experience, after having had no previous ear problems or pain. Thank you Adrien      -----Original Message-----From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of yankeesfan1013Sent: Friday, January 06, 2006 2:49 AMcholesteatoma Subject: Re: cholesteatoma surgery > >> > Hi,> > > > I am happy that I just found this site! I am 51 years old and I > had my> > first surgery to remove the cholesteatoma from my left ear in June,> > 2003. It ate one of my middle ear bones so I have hearing loss from> > that. The dr spoke about possible reconstruction, but only if > there's> > no sign of the cholesteatoma after the surgery. Everything went > well> > but I had a lot of pain from the mastoid bone being cut away. He> > actually laid the new tympanic membrane over the two remaining > bones> > in hopes of increasing my hearing. It actually worked...I still > can't> > hear highs or lows, but there was an increase in the mid-range. H> > > > I see him every two months and he always was cleaning "debris" out > of> > my ear. This was often unpleasant and painful...especially when he> > used the suction. One day, he took the "debris" out and informed me> > that it was the cholesteatoma growing back! That was bad news. Time> > passed and he continued to clean the ear out. In October, he said> he> > felt I should have a CT scan because he was afraid the > cholesteatoma> > was where he couldn't see it. He also was concerned about my ear> > canal. Scar tissue had taken over and it was very difficult to fit > the> > otoscope and his instruments in there. He wanted to cut away the > scar> > tissue. > > > > I had the surgery in December, 2005. He had to cut out a lot of > growth> > again. He said it was all in the cavity....even on the bone at the> > top. He scraped it out and removed the scar tissue from the ear > canal.> > Prior to the surgery, I asked about reconstruction. He said it's> > impossible as long as the infection is present, and he fears the> > growth is now a chronic condition for me. The recovery was so> > different with this surgery. I was able to go back to work in one> week> > after the first surgery. This time, I needed two full weeks to> > recuperate. My face was swollen, my eye was irritated and tearing, > the> > gland hurt, my stomach was sick, I felt exhausted, and I was > swollen> > and sore in the surrounding ear area, including the temple, cheek,> > neck and back of the head. I took lots of advil for pain. The dr> > didn't think I needed anything stronger. I took 600 mgs. I am still> > having some discharge, but that's normal. I go back next week and> > we'll see what he has to say.> > > > I know it's scary, but you do get through it. I was frightened > when I> > first heard about this. I was afraid of nerve damage and not being> > ablt to smile again. Hang in there! Good luck to everyone!> > > > Kathy> >> Hi Kathy,, Jenine here,Just read your story about the ctoma.I have > had it since I was 8 and am now 44 and am just getting over my last> tumor, severe case makes me very ill for 9 months every time.just > thought you might find it helpful to know that you can remove scar > tissue with out discomfort by peeling a small onion and cooking it > in a microwave in glad wrap for a minuit and a half, cool it and put > the root end against your ear as hot as you can bear without burning > yourself. bandage it to your ear for an hour. once a day for a week> and it will leave your ear with no scar tissue. I have had 6 > operations and have removed the last three tumors myself without > surgery, there is a pattern to my disease , I have had it twice 9 > yrs apart then twice 6 yrs apart and will probably get it again in > three years time. it took a top specialist in Melbourne 6 years to > get it under control when I was a child,and I certainly can epathize > with anyone that has this disease.I could tell you so much much more > but I dont want to impose on anyone who may prefer to use the > traditional treatment. I had to find natural ways to fight the > disease as they cant operate anymore without causing facial > paralasis and loss of balance. Kind regards, Jenine.>Hi, Jenine,Thanks for writing to share your experiences. I am sorry to hear youhave been through so much and that surgery is no longer an option foryou. Please feel free to share anything you can with me by emailing methrough the group or directly. How did you actually remove a tumoryourself?? I'm pretty sure I read another letter from you that you didit yourself, but maybe I'm mistaken. I appreciate learning all that Ican. Good luck with everything and please keep in touch!Kathy

[Guest guest]

Adrien. I was 49 when they found my c-toma. I didn't have any problems with my ears either and I had a huge tumor as well that had taken out two of my hearing bones. I think I may have blown out my eardrum once while flying to Seattle from New York in1990(my arms were really tired too after all that flapping). I am sorry to hear about your c-toma but happy to know that I am not alone in the "how did this happen?" club. Seems like everyone who gets this thing has had multiple problems with their ears all their lives andbefore the c-toma, I could hear a pin drop a block away. My wife used to say I had bionic ears, I could hear so well. Anyway, I hope all is well with you. Dave L.Adrien <biplane@...> wrote: Hello, I am 52 years old and had my first operation on the 21 December. I have never had any ear problems at all throughout my life, and it was early November 2005 when I noticed my hearing suddenly decline. I went for a hearing test, and the let ear had dropped to -85dB on the low notes !! The 3.5 Hour operation was on the 21 December. C-toma was much bigger that the CT scan showed, and Surgeon said, It was very very close to the brain, and had to place new bone material as the original had been eaten away. My inner ear was saved, but one more month, and it would have started to destroy that as well. Middle ear was destroyed beyond repair. This is really concerning, the surgeon stated that she had never seen a case where the patient had not had previous ear problems and/or no pain at all. She stated it probably started with a pin prick whole I must have had unknowingly for many years in my ear drum. I was wondering it anyone in the group has had a similar experience, after having had no previous ear problems or pain. Thank you Adrien -----Original Message-----From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of yankeesfan1013Sent: Friday, January 06, 2006 2:49 AMcholesteatoma Subject: Re: cholesteatoma surgery >

>> > Hi,> > > > I am happy that I just found this site! I am 51 years old and I > had my> > first surgery to remove the cholesteatoma from my left ear in June,> > 2003. It ate one of my middle ear bones so I have hearing loss from> > that. The dr spoke about possible reconstruction, but only if > there's> > no sign of the cholesteatoma after the surgery. Everything went > well> > but I had a lot of pain from the mastoid bone being cut

away. He> > actually laid the new tympanic membrane over the two remaining > bones> > in hopes of increasing my hearing. It actually worked...I still > can't> > hear highs or lows, but there was an increase in the mid-range. H> > > > I see him every two months and he always was cleaning "debris" out > of> > my ear. This was often unpleasant and painful...especially when he> > used the suction. One day, he took the "debris" out and informed me>

> that it was the cholesteatoma growing back! That was bad news. Time> > passed and he continued to clean the ear out. In October, he said > he> > felt I should have a CT scan because he was afraid the > cholesteatoma> > was where he couldn't see it. He also was concerned about my ear> > canal. Scar tissue had taken over and it was very difficult to fit > the> > otoscope and his instruments in there. He wanted to cut away the > scar> > tissue. > > > > I had the surgery in December, 2005. He had to cut out a lot of > growth> > again. He said it was all in the cavity....even on the bone at the> > top. He scraped it out and removed the scar tissue from the ear > canal.> > Prior to the surgery, I asked about reconstruction. He said it's> > impossible as long as the infection is present, and he fears the> > growth is now a chronic condition for me. The recovery was so> > different with this surgery. I was able to go back to work in one > week> > after the first surgery. This time, I needed two full weeks to> > recuperate. My face was swollen, my eye was irritated and tearing, > the> > gland hurt, my stomach was sick, I felt exhausted, and I was > swollen> > and sore in the surrounding ear area, including the temple, cheek,> > neck and back of the head. I took lots of advil for pain. The dr> > didn't think I needed anything stronger. I took 600 mgs. I am still> > having some discharge, but that's normal. I go back next week

and> > we'll see what he has to say.> > > > I know it's scary, but you do get through it. I was frightened > when I> > first heard about this. I was afraid of nerve damage and not being> > ablt to smile again. Hang in there! Good luck to everyone!> > > > Kathy> >> Hi Kathy,, Jenine here,Just read your story about the ctoma.I have > had it since I was 8 and am now 44 and am just getting over my last > tumor, severe case makes me very ill for 9 months every time.just > thought you might find it helpful to know that you can remove scar > tissue with out discomfort by peeling a small onion and cooking it > in a microwave in glad wrap for a minuit and a half, cool it and put > the root end against your ear as hot as you can bear without burning > yourself. bandage it to your ear for an hour. once a day for a week > and it will leave your ear with no scar tissue. I have had 6 > operations and have removed the last three tumors myself without > surgery, there is a pattern to my disease , I have had

it twice 9 > yrs apart then twice 6 yrs apart and will probably get it again in > three years time. it took a top specialist in Melbourne 6 years to > get it under control when I was a child,and I certainly can epathize > with anyone that has this disease.I could tell you so much much more > but I dont want to impose on anyone who may prefer to use the > traditional treatment. I had to find natural ways to fight the

> disease as they cant operate anymore without causing facial > paralasis and loss of balance. Kind regards, Jenine.>Hi, Jenine,Thanks for writing to share your experiences. I am sorry to hear youhave been through so much and that surgery is no longer an option foryou. Please feel free to share anything you can with me by emailing methrough the group or directly. How did you actually remove a tumoryourself?? I'm pretty sure I read another letter from you that you didit yourself, but maybe I'm mistaken. I appreciate learning

all that Ican. Good luck with everything and please keep in touch!Kathy

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[Guest miranda]

I am hoping to find out if anyone has found any alternative treatment for Cholesteatoma. My husband has had chronic ear infections as a child, tubes in his ears as a child, a lot of scarring tissue. Generally has always had ear infections accompany with seasonal flu. This last year the ear really never healed itself after an infection and drains on and off, we went to see several specialists who suggest having the Mastoid surgery to remove the Cholesteatoma. Before going under the knife, we would just like to try anything more natural/alternative before this last resort. According to all the doctors Surgery is the only way to cure it. But I have read that people have multiple surgeries because it comes back...so this is very disheartening to hear, any advice?