Re: Newbie here :)

[Guest guest]

Hi and welcome!

Everybody recovers differently, but from what I have read thus far and with my own experience you will do just fine. Once surgery is over, you should be on your feet within a day or so. You really shouldn't need "extra" care (but always nice when there is someone to help out with household chores and such). For me, my first ctoma surgery I had on a Friday and was back at work on Monday. I took the weekend to rest and just "veg" out. I have dealt with hearing loss for most of my life so it is not something new for me. However, when I lost almost all of my hearing in my left ear several years ago I was devistated! I have regained alot of hearing in the affected ear because of the surgeries to correct the ctoma "invasion" (that is what I call it anyway). You should be able to play your violin and listen to music as you always have. I will keep you in my prayers and please let us know how you a re doing! Best of luck to you and your family!

Regards, G. Kinsman <emilyk@...> wrote:

Greetings from the Blue Ridge Mountains of North Carolina! My name is . I'm 26, and I was diagnosed over a year ago with a cholesteatoma in my left ear. The diagnosis was made by my ENT, a wonderful man with a great sense of humor and a heart of gold. Unfortunately he downplayed the problem quite a bit, and until last week I didn't even know how to *pronounce* Cholesteatoma.

Over the past year and a half or so since the diagnosis was made, my ENT has been keeping an eye on the growth. He said it was very "stable" and so did not rush me into surgery. In August he ordered my first hearing test since elementary school and found that -Surprise!- I have marked hearing loss in my left ear. He offered to put a tube in my ear and when I declined, sent me on my way telling me to come back in six months. I saw him again on Wednesday. He said the cholesteatoma hasn't grown that he can see, but that it was time to plan for surgery. He referred me to that man he calls "the best ear doctor in the Southeast," Dr. McElveen in Raleigh. I've got an appointment in August. I'm scared to death, but dealing with it.

Last night I found some time to do some research. I read several testimonies and experiences of people who had been through Cholesteatoma surgery. All of them experienced partial or total hearing loss in the affected ear after surgery. I read story after story and just started to cry because I love music and I play violin (just as a hobby). I also have a job in customer service. How will I continue that while being deaf (or close to it) in one ear? I'm heart-broken, really, but I'm trying to keep a positive attitude. Chin up and all that. This is something that I'm going to have to deal with, so I might as well get used to the idea. My poor husband just makes it worse, of course, getting all teary eyed when we talk about it and getting mad at me when I make jokes about it. Oh, well. I guess everyone deals with things differently.

The main question I have that I've not been able to find an answer to is how long the recovery time will be. How long will I be out of work after the surgery? How much care will I need? Will I be able to pretty much take care of myself right away or will it be a couple of days?

Well, just thought I'd introduce myself to the group. I'm looking forward to getting to know everyone!

Blessings,

[Guest guest]

Quoting Kinsman <emilyk@...>:

> Greetings from the Blue Ridge Mountains of North Carolina! My name is

> . I'm 26, and I was diagnosed over a year ago with a cholesteatoma

> in my left ear. The diagnosis was made by my ENT, a wonderful man with a

> great sense of humor and a heart of gold. Unfortunately he downplayed the

> problem quite a bit, and until last week I didn't even know how to

> *pronounce* Cholesteatoma.

Nice to meet you, . I'm glad you found us. My c-toma appears to be

in remission for the last four years.

> Over the past year and a half or so since the diagnosis was made, my ENT

> has been keeping an eye on the growth. He said it was very " stable " and

> so did not rush me into surgery. In August he ordered my first hearing

> test since elementary school and found that -Surprise!- I have marked

> hearing loss in my left ear. He offered to put a tube in my ear and when

> I declined, sent me on my way telling me to come back in six months. I

> saw him again on Wednesday. He said the cholesteatoma hasn't grown that

> he can see, but that it was time to plan for surgery. He referred me to

> that man he calls " the best ear doctor in the Southeast, " Dr. McElveen in

> Raleigh. I've got an appointment in August. I'm scared to death, but

> dealing with it.

I think I won't be alone in saying that August is far too long to wait to

have this taken care of. Your doctor can't see where the cholesteatoma is

growing, and growing it probably is. It goes into the middle and inner ear

where it can't easily be identified. Sometimes it acts as a " bridge " to

the inner ear and functions as a sound conductor, even as it is destroying

ossicles (little ear bones). I certainly don't want to scare you, but this

Monster is nothing to mess around with.

>

> Last night I found some time to do some research. I read several

> testimonies and experiences of people who had been through Cholesteatoma

> surgery. All of them experienced partial or total hearing loss in the

> affected ear after surgery. I read story after story and just started to

> cry because I love music and I play violin (just as a hobby). I also have

> a job in customer service. How will I continue that while being deaf (or

> close to it) in one ear? I'm heart-broken, really, but I'm trying to keep

> a positive attitude. Chin up and all that. This is something that I'm

> going to have to deal with, so I might as well get used to the idea. My

> poor husband just makes it worse, of course, getting all teary eyed when

> we talk about it and getting mad at me when I make jokes about it. Oh,

> well. I guess everyone deals with things differently.

Quite a few of us have had reconstructive surgery after cholesteatoma

surgery. It's usually done at the " second look " procedure. I had a TORP,

which is a total ossicular replacement prosthesis placed and it corrected

my hearing to nearly normal. I could hear out of my affected ear in the

recovery room, even with packing, swelling and covered with bandages, half

out of it from anesthesia! I know that another List member, Jane, has had

her hearing restored as well. I hope that other members will tell you

their experiences, too. If reconstruction isn't an option for you, there

are hearing aids available. Conductive hearing losses, such as those

caused by c-toma, are much easier to correct than those caused by nerve

damage. Aids are also getting smaller and more accurate as technology

improves. I am a huge music fan and I still enjoy sound very much. I

still have use for stereo :-D

>

> The main question I have that I've not been able to find an answer to is

> how long the recovery time will be. How long will I be out of work after

> the surgery? How much care will I need? Will I be able to pretty much

> take care of myself right away or will it be a couple of days?

I was surprised at how little pain I had considering I had surgery on my

head. I was a little dizzy, though most of my family would say that wasn't

out of the ordinary. Time off from work depends a lot on the type of work

you do. A desk job will be easier to resume than one involving a lot of

movement, like lifting. I'd say a week would probably be enough, two at

the very most. It's good to have someone around for the first few days,

although you'll probably feel like sleeping a lot. It helps to have

someone to assist with hair washing to keep the incision dry and heavy

housework. You won't be able to drive if you're taking pain medication.

>

> Well, just thought I'd introduce myself to the group. I'm looking forward

> to getting to know everyone!

>

> Blessings,

>

>

>

>

Glad you're here, sorry you need to be.

Diane

--

http:/www.sassysuds.com

[Guest guest]

Hey, ,

Welcome to

the group. It’s a great support

system but you will find that everyone’s recovery has been different. You may want to read the archived posts

and see what we have all been through to get an idea. My feeling is to prepare for the worst and hope for the best

and what is reality is somewhere in between.

Seems like

you may want to get an appointment sooner if you can. August sounds like a long way off.

Good luck!

Curtis

-----Original

Message-----

From: Kinsman

[mailto:emilyk@...]

Sent: Friday, May 02, 2003 7:04 PM

cholesteatoma

Subject: Newbie

here

Greetings

from the Blue Ridge Mountains of North Carolina! My name is . I'm

26, and I was diagnosed over a year ago with a cholesteatoma in my left

ear. The diagnosis was made by my ENT, a wonderful man with a great sense of

humor and a heart of gold. Unfortunately he downplayed the problem quite a bit,

and until last week I didn't even know how to *pronounce* Cholesteatoma.

Over

the past year and a half or so since the diagnosis was made, my ENT has

been keeping an eye on the growth. He said it was very " stable " and

so did not rush me into surgery. In August he ordered my first hearing test

since elementary school and found that -Surprise!- I have marked hearing loss

in my left ear. He offered to put a tube in my ear and when I declined, sent me

on my way telling me to come back in six months. I saw him again on Wednesday.

He said the cholesteatoma hasn't grown that he can see, but that it was time to

plan for surgery. He referred me to that man he calls " the best ear

doctor in the Southeast, " Dr. McElveen in Raleigh. I've got an appointment

in August. I'm scared to death, but dealing with it.

Last

night I found some time to do some research. I read several testimonies and

experiences of people who had been through Cholesteatoma surgery. All of them

experienced partial or total hearing loss in the affected ear after surgery. I

read story after story and just started to cry because I love music and I play

violin (just as a hobby). I also have a job in customer service. How will I

continue that while being deaf (or close to it) in one ear? I'm heart-broken,

really, but I'm trying to keep a positive attitude. Chin up and all that. This

is something that I'm going to have to deal with, so I might as well get used

to the idea. My poor husband just makes it worse, of course, getting all teary

eyed when we talk about it and getting mad at me when I make jokes about it.

Oh, well. I guess everyone deals with things differently.

The

main question I have that I've not been able to find an answer to is how long

the recovery time will be. How long will I be out of work after the surgery?

How much care will I need? Will I be able to pretty much take care of myself

right away or will it be a couple of days?

Well,

just thought I'd introduce myself to the group. I'm looking forward to getting

to know everyone!

Blessings,

[Guest guest]

,

I am also brand new to the group. I was diagnosed in March 1982

at 25 years of age. I had lost the hearing in my right ear.

The c'toma had actually grown down the ear canal. The first doctor

I went to suggested some really horrible surgery. So after consulting

with my childrens' pediatrian, I went to this wonderful ENT. He immediately

did surgery. Before my surgery, he did a tuning fork test and felt

I would have hearing after the surgery. After the surgery, he figured

my c'toma had probably started when I was 4 or 5 years old. I regained

back the hearing which I had before, which was still about a 40% loss.

But the good news, my other ear was 'way' above normal. So

my left ear had compensated all that time for my hearing loss in the right

ear.

I don't know if the surgery has changed much since mine in 1982, but

my results have been great. The first doctor wanted to do all the

surgery through the ear canal, but the doctor who did my surgery went through

the mastoid, partially removing my ear, he didn't have to remove or reconstruct

my ear drum. It seems I was only really down a couple of days, but

my ear was packed for three weeks. After he removed the packing it

seems it took a couple of months for the new cavity to heal. It was

nearly a year before the nerves regenerating in my ear lobe. Even

if you look right at my ear, you can't tell I ever had surgery.

After reading most of the emails from this group, I feel very fortunate.

I haven't had a problem until a few months ago. I developed my first

mastoid infection in Janaury and a doctor discovered that the graft between

my cavity and the middle ear is gone. I need to have surgery, but

my doctor has retired and I haven't found someone I trust yet. The

new doctor did give me one piece of advice. He told me to make a

mixture of 1/2 alcohol and 1/2 vinegar and use as ear drops in my bad ear.

He told me many c'toma patients find this helpful in reducing or preventing

infections. Like he said, "Bacteria can't grow in an acidic environment."

Good luck and I hope you have even better results than me.

Terri in Utah

Kinsman wrote:

Greetings

from the Blue Ridge Mountains of North Carolina! My name is . I'm

26, and I was diagnosed over a year ago with a cholesteatoma in my left

ear. The diagnosis was made by my ENT, a wonderful man with a great sense

of humor and a heart of gold. Unfortunately he downplayed the problem quite

a bit, and until last week I didn't even know how to *pronounce* Cholesteatoma. Over

the past year and a half or so since the diagnosis was made, my ENT has

been keeping an eye on the growth. He said it was very "stable" and so

did not rush me into surgery. In August he ordered my first hearing test

since elementary school and found that -Surprise!- I have marked hearing

loss in my left ear. He offered to put a tube in my ear and when I declined,

sent me on my way telling me to come back in six months. I saw him again

on Wednesday. He said the cholesteatoma hasn't grown that he can see, but

that it was time to plan for surgery. He referred me to that man he calls

"the best ear doctor in the Southeast," Dr. McElveen in Raleigh. I've got

an appointment in August. I'm scared to death, but dealing with it. Last

night I found some time to do some research. I read several testimonies

and experiences of people who had been through Cholesteatoma surgery. All

of them experienced partial or total hearing loss in the affected ear after

surgery. I read story after story and just started to cry because I love

music and I play violin (just as a hobby). I also have a job in customer

service. How will I continue that while being deaf (or close to it) in

one ear? I'm heart-broken, really, but I'm trying to keep a positive attitude.

Chin up and all that. This is something that I'm going to have to deal

with, so I might as well get used to the idea. My poor husband just makes

it worse, of course, getting all teary eyed when we talk about it and getting

mad at me when I make jokes about it. Oh, well. I guess everyone deals

with things differently. The

main question I have that I've not been able to find an answer to is how

long the recovery time will be. How long will I be out of work after the

surgery? How much care will I need? Will I be able to pretty much take

care of myself right away or will it be a couple of days? Well,

just thought I'd introduce myself to the group. I'm looking forward to

getting to know everyone! Blessings,

[Guest guest]

Hi ,

Welcome to the group. Please take the time to go back and read the archived posts. You will find SO much helpful information. Everyone here is ready and more than willing to answer any questions or worries that you might have. They are awesome. Im sorry for your need to be here but once again,Welcome.

Take care,

Renonda

(mom of )

[Guest guest]

Hi ,

Welcome to the group. Like you I was diagnosed just over a year ago. I am glad your ent finally referred you to another specialist.

In most cases the recovery period is not long... some people are back to work within a week. You will pretty much be able to take care of yourself once you are out of the hospital. (Some people are admitted overnight). If you have someone to stay with you for a day or so, that would be bonus, but you will be amazed at how quickly you recover.

Your hearing probably wont improve much, or at all... some people even notice a decrease in their hearing. But if you can hear your violin now, that shouldn't change. Keep in mind that Bethoven, used a length of wood... He would put one end of the stick against his mastoid and the other against the piano. He could hear his music that way, because his hearing loss was conductive. So I would think that if your chin is against the violin, the sound should be conducting.

Lynn

-- Newbie here

Greetings from the Blue Ridge Mountains of North Carolina! My name is . I'm 26, and I was diagnosed over a year ago with a cholesteatoma in my left ear. The diagnosis was made by my ENT, a wonderful man with a great sense of humor and a heart of gold. Unfortunately he downplayed the problem quite a bit, and until last week I didn't even know how to *pronounce* Cholesteatoma.

Over the past year and a half or so since the diagnosis was made, my ENT has been keeping an eye on the growth. He said it was very "stable" and so did not rush me into surgery. In August he ordered my first hearing test since elementary school and found that -Surprise!- I have marked hearing loss in my left ear. He offered to put a tube in my ear and when I declined, sent me on my way telling me to come back in six months. I saw him again on Wednesday. He said the cholesteatoma hasn't grown that he can see, but that it was time to plan for surgery. He referred me to that man he calls "the best ear doctor in the Southeast," Dr. McElveen in Raleigh. I've got an appointment in August. I'm scared to death, but dealing with it.

Last night I found some time to do some research. I read several testimonies and experiences of people who had been through Cholesteatoma surgery. All of them experienced partial or total hearing loss in the affected ear after surgery. I read story after story and just started to cry because I love music and I play violin (just as a hobby). I also have a job in customer service. How will I continue that while being deaf (or close to it) in one ear? I'm heart-broken, really, but I'm trying to keep a positive attitude. Chin up and all that. This is something that I'm going to have to deal with, so I might as well get used to the idea. My poor husband just makes it worse, of course, getting all teary eyed when we talk about it and getting mad at me when I make jokes about it. Oh, well. I guess everyone deals with things differently.

The main question I have that I've not been able to find an answer to is how long the recovery time will be. How long will I be out of work after the surgery? How much care will I need? Will I be able to pretty much take care of myself right away or will it be a couple of days?

Well, just thought I'd introduce myself to the group. I'm looking forward to getting to know everyone!

Blessings,

[Guest guest]

Hi ,

Welcome to our group!

Hearing loss in one ear won't keep you from enjoying your music or your

violin. Adaptation is the name of the game for humans. And there is always

the possibility of reconstruction eventually. It isn't possible for

everyone and it doesn't work for everyone but it's a possibility.

As for recovery. That varies with the extent of the surgery and your

particular constitution. I had a mastoidectomy and tympan-somthing. He

cleaned out and rebuilt my mastoid region (behind the ear) and cleaned out

my middle hear and rebuilt my eardrum. It took 5 hours, it's usually longer

than the doctor tells you. I was out of work for a week and half time the

following week. My ear and assorted accompaning muscles were sore for a few

months but not so I couldn't funtion. Most often their is a first major

surgery where they clean everything out then in 6-12 months they go in for a

" second look " to make sure they got all the C-toma. If all is clear they

will often do reconstruction during this second look if possible. My second

operation only tool 1.5 hours on a Friday and I was running errands the next

day.

As for taking care of your self. That varies from person to person. It

certainly is nice to have someone take care of you, or help you but I don't

think you have too. I wasn't bed ridden, I just didn't have much

endurance/energy right after the surgery. The medications they give

contribute to that.

Youve' come to the right place for your questions. I'm sure there will be

several people responding to your question.

God bless,

Jane

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[Guest guest]

:

I had C-toma surgery when I was 7, another one when I was 17 (just to widen my ear canal to reduce ear infections -- not a recurrence of c-toma)(I'm 33 now). Really, I know no other way than to "hear" out of one ear. You will probably have some amount of hearing (since the bones and eardrum are just *conductors* of sound to the inner ear). I do medical transcription and my job depends on hearing, and, don't mind if I say, I'm pretty darn good at my job. I'm one of the top producers. Since you're 26, you'll probably have to get used to it (if there is hearing loss at all!!). I've heard so many people here coming out of the surgery with minimal to no hearing loss so, unless the c-toma has totally invaded your middle ear destroying everything in its path, I don't think you'll have a problem. I hope everything works out for you. You have joined an AWESOME group of people here and all are very informative, either in their own histories or in all the jargon that goes along with it. I don't think you'll have a problem finding your answers here.

Good Luck,

I.

[Guest guest]

Hi and welcome,

As for your question about recovery time, everyone seems to be different. I do however have some hope for you as far as your hearing is concerned. I had a mastoidectomy about 5 weeks ago now to remove an extensive cholesteatoma in my left ear. This past Tuesday I had my first post op hearing test - and to everyone's surprise my hearing of two frequencies went from 45db before surgery to 25 after (around 20 is normal). It doesn't make a whole lot of sense because I am still missing my middle ear bone and will not have reconstructive surgery for another 5 months or so - very promising news for me and maybe for you as well!

Good luck,

Melod

[Guest guest]

hi.

I am 30 and can't decide on what to do. I have had arthritis since I

was 6 yrs old and was told I needed to have my hips replaced when I

was 18. I waited. Now I am 30, married with 2 kids and my hips hurt

more than ever. I also have scoliosis which I think got worse because

of my pregnancy. I am reluctant to proceed with the thr because of

the eagerness my doctor had when I was 18. it was almost like he

couldn't wait to cut me open. If there was a way to fix my spine and

redo my hips all at the same time- I would consider it. I don't want

a miracle; I just want the mobility I had before I had my babies. (I

could run 4 miles on an elliptical and feel great! Now I can barely

stand to move one foot in front of another.)

How mobile are people after they had a thr? I don't want to do a

split or even touch my toes but I would like to be able to touch my

knees!

- 30 but feel like im 90!

>

> Hi everyone -

>

> I just found this group while looking online at information about

total

> joint replacements.

>

> I had my hip replaced last July at a young age - 26. I'm basically

> here to help anyone preparing for surgery, or sitting on the fence

> about deciding. I'm also hoping that if there are any younger

people

> out there in the same position as I am that we can talk. It's a

pretty

> rough situation to be in when you're this young, and to be able to

talk

> to others about their experiences is helpful to me.

>

> Thanks in advance, and I look forward to chatting with everyone.

>

> a

>

[Guest guest]

Does it really make life that much better? I am kinda excited to

think i will be able to walk with out pain. If it is that good then i

want to get both thr by the end of this year. why wait! my kids are

just getting older and older and i need to keep up with them!

i am a little scared of having to do it over in 10+ years.

>> Hi everyone -> > I just found this group

while looking online at information about total > joint

replacements.> > I had my hip replaced last July at a young age - 26.

I'm basically > here to help anyone preparing for surgery, or sitting

on the fence > about deciding. I'm also hoping that if there are any

younger people > out there in the same position as I am that we can

talk. It's a pretty > rough situation to be in when you're this

young, and to be able to talk > to others about their experiences is

helpful to me.> > Thanks in advance, and I look forward to chatting

with everyone. > > a>

>

>

>

>

>

>

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