Newbie

November 17, 2004

Shirley,

My God, this doesn't sound right to me either. I agree with you-- he

lied by ommission. Something this important you should know

beforehand. Maybe he wanted to be sure before he said anything or

believes it's no big deal. That's just wrong. My son's doctor told

us he suspected it was c-toma months before surgery. He waited until

he got the ear cleaned up enough to see the c-toma but told us in the

beginning what he suspected and what it meant. By the time he could

confirm it we knew what it was and what had to be done and what the

long term consequences were.

Whether or not this guy is the right doctor depends on a lot of

things. Is he good at what he does? Is your child comfortable with

him? Maybe you can check him out through the state or the ama or

some of those websites that report on doctors while you're waiting

for the next visit. It's really hard when it's your child. Things

you accept for yourself are not good enough when it comes to your

child. It's especially hard when your child is young. My son ended

up with a canal wall down procedure which means life long follow up

care so when the Navy brought in a new ENT who we thought was not

qualified to treat my son (he had a bad attitude) we had our son sent

back to his original ENT who had since gotten out of the Navy. My

son is comfortable with him and we have alot of confidence in him.

Their relationship is going to be an important part of my son's life

so we let him make the decision but we agreed with him completely. I

hope you can find a doctor that you and your child are both

comfortable with and have confidence in as well.

Let us all know how it goes. In the meantime, you're in our prayers.

> >

> > Hi, I am new to this cholesteatoma thing. Haven't gotten much

info

> > yet. My eight year old just had surgery the 12th to repair a

hole

> in

> > the eardrum, and the surgeon came out and told us he found

the " C "

> > and not to worry he would follow through, but from things I have

> > found on the Net, and heard from this group it is way more

serious

> > than he stated. Any ideas for me. Appreciate any and all help I

> can

> > get. He took out two hearing bones and went through the mastoid

to

> > clear it all out.

> > Shirley Moma

>

November 22, 2004

I would just like to ask, what is the average time most people have to wait

between diagnosis and surgery? I ask this because my daughter was

diagnosed in July, and her appt for surgery has only just arrived and is

scheduled for 8th Dec. This seems to be quite a bit longer than most of you

guys are waiting Thanks Nicki

>From: Shirley Moma <shirleymoma@...>

>Reply-cholesteatoma

>cholesteatoma

>Subject: Re: Re: Newbie

>Date: Wed, 17 Nov 2004 07:09:26 -0800 (PST)

>

>:

>Thanks for your encouragement. The most aggravating thing is that she had

>had some trouble after swimming lessons, took her to her Ped. and he saw

>something and sent her to an ENT who immediatly said she needed the ear

>drum repaired, but it would never work if she had her tonsils and adnoids,

>and he did that surgery and sent her to an Otologist to do the ear repair.

>He said he was going to do a simple procedure to repair the ear drum, and

>we went to the hospital, signed her in and I noticed the C-toma word on the

>admission papers but what did I know thinking it was what he said he was

>going to do. After the surgery he came and told us he found the C-toma,

>and all the necessary things he did to remove it all, which is fine, but

>afterward thinking it over, I feel he KNEW all along that was what was

>going to be done, and lied to me by ommission! He never told us how it

>would become an ongoing thing and how dangerous it could be. He will see

>her in three weeks, then in six months he

> will go back in and do the reconstruction, and maybe she will be back to

>hearing , maybe not. I do not feel I am getting the correct info from him,

>and cannot wait for that first follow up appt. I am afraid he might not be

>the Dr. she will need to get her through this. I was so glad to find this

>group, now I do know some things about it and will have a long list of

>questions for him, and think if he is hesitant to answer or makes light of

>it, I will just find another. We are in Phoenix, Az by the way and if

>anyone in this area knows any Physicians who are good please let me know.

>Shirley

>

>cathy <cathym.bscpa@...> wrote:

>

>Shirley,

>It sounds like the doc took care of the c-toma if he took out the

>hearing bones and cleaned out the mastoid. That's well beyond

>repairing the eardrum. I would ask the surgeon to tell you exactly

>if he rmoved the c-toma and what follow up he has planned. If he did

>a canal wall up procedure then he'll need to do a second-look surgery

>sometime in the next year. I'm sure he plans on giving you more info

>at your child's follow up visit but you should be prepared with a

>list of questions to ask him. In the meantime, I'm sure you can tell

>by what you've read that water is the enemy and you need to keep the

>ear dry no matter what has already been done and what else needs to

>be done.

>Good luck,

>

> >

> > Hi, I am new to this cholesteatoma thing. Haven't gotten much info

> > yet. My eight year old just had surgery the 12th to repair a hole

>in

> > the eardrum, and the surgeon came out and told us he found the " C "

> > and not to worry he would follow through, but from things I have

> > found on the Net, and heard from this group it is way more serious

> > than he stated. Any ideas for me. Appreciate any and all help I

>can

> > get. He took out two hearing bones and went through the mastoid to

> > clear it all out.

> > Shirley Moma

>

November 22, 2004

Seems like it should be soon, I have read that it can grow very fast, but then I have read that it usually doesn't. My child was diagnosed on the day of surgery. But the problem began in June which made it 5 months before surgery in Nov. I am waiting for some facts from the dr. in Dec. I don't even know if she has packing in the ear, or anything, and I am very anxious to find out what is really going on.

ShirleyNicola Wiltshire <goodsell69@...> wrote:

I would just like to ask, what is the average time most people have to wait between diagnosis and surgery? I ask this because my daughter was diagnosed in July, and her appt for surgery has only just arrived and is scheduled for 8th Dec. This seems to be quite a bit longer than most of you guys are waiting Thanks Nicki>From: Shirley Moma >Reply-cholesteatoma >cholesteatoma >Subject: Re: Re: Newbie>Date: Wed, 17 Nov 2004 07:09:26 -0800 (PST)>>:>Thanks for your encouragement. The most aggravating thing is that she had >had some trouble after swimming lessons, took her to her Ped. and he saw >something and sent her to an ENT who immediatly said she needed the ear >drum repaired, but it would never work

if she had her tonsils and adnoids, >and he did that surgery and sent her to an Otologist to do the ear repair. >He said he was going to do a simple procedure to repair the ear drum, and >we went to the hospital, signed her in and I noticed the C-toma word on the >admission papers but what did I know thinking it was what he said he was >going to do. After the surgery he came and told us he found the C-toma, >and all the necessary things he did to remove it all, which is fine, but >afterward thinking it over, I feel he KNEW all along that was what was >going to be done, and lied to me by ommission! He never told us how it >would become an ongoing thing and how dangerous it could be. He will see >her in three weeks, then in six months he> will go back in and do the reconstruction, and maybe she will be back to >hearing , maybe not. I do not feel I am getting the correct info from him, >and

cannot wait for that first follow up appt. I am afraid he might not be >the Dr. she will need to get her through this. I was so glad to find this >group, now I do know some things about it and will have a long list of >questions for him, and think if he is hesitant to answer or makes light of >it, I will just find another. We are in Phoenix, Az by the way and if >anyone in this area knows any Physicians who are good please let me know.>Shirley>>>cathy wrote:>>Shirley,>It sounds like the doc took care of the c-toma if he took out the>hearing bones and cleaned out the mastoid. That's well beyond>repairing the eardrum. I would ask the surgeon to tell you exactly>if he rmoved the c-toma and what follow up he has planned. If he did>a canal wall up procedure then he'll need to do a second-look surgery>sometime in the next year. I'm sure he plans on

giving you more info>at your child's follow up visit but you should be prepared with a>list of questions to ask him. In the meantime, I'm sure you can tell>by what you've read that water is the enemy and you need to keep the>ear dry no matter what has already been done and what else needs to>be done.>Good luck,>>> >> >> > Hi, I am new to this cholesteatoma thing. Haven't gotten much info> > yet. My eight year old just had surgery the 12th to repair a hole>in> > the eardrum, and the surgeon came out and told us he found the "C"> > and not to worry he would follow through, but from things I have> > found on the Net, and heard from this group it is way more serious> > than he stated. Any ideas for me. Appreciate any and all help I>can> >

get. He took out two hearing bones and went through the mastoid to> > clear it all out.> > Shirley Moma>>>>>>

February 5, 2005

Hi Dani,

I don't know when I hear someone so young has a hip replacement done and I didn't have mind done until I was 57 that was the year 2000 mind didn't go that well so I'm happy when I hear of the young ones hip operations went ok. Well I welcome you to the group and your learn a lot from this group I did .

Susie

-------------- Original message -------------- > > > > Just wanted to introduced myself. My name is Dani and I'm 30 years > old. I had a total hip replacement in 2001. I think it's the best > thing I ever did. I'm looking forward to getting to know people who > understand the daily trials I go through. > > > > > > > > >

February 5, 2005

Hi Dani,

I am 44 and just had a THR in December 2004, I think most of us here

know what u r going thru, yet as with some of us our ops were more

recent..I am sure u can teach us a thing or two, as u had yours a

few years ago...

I am interested to know what your daily trials are..?

Mark

> Hi Dani,

> I don't know when I hear someone so young has a hip replacement

done and I didn't have mind done until I was 57 that was the year

2000 mind didn't go that well so I'm happy when I hear of the young

ones hip operations went ok. Well I welcome you to the group and

your learn a lot from this group I did .

> Susie

>

> -------------- Original message --------------

>

> >

> > Just wanted to introduced myself. My name is Dani and I'm 30

years

> > old. I had a total hip replacement in 2001. I think it's the

best

> > thing I ever did. I'm looking forward to getting to know people

who

> > understand the daily trials I go through.

> >

February 6, 2005

Hi Dani, I am here, too. Marge

Dear Dani,Welcome also. Gee--after 4 years, are you continuing to go through daily trials? Do you feel you can share them with us? Eleanor

February 7, 2005

Hi le,

Welcome to the group. What was the reason

for your op at such a young age? I am 34 and I had a TLHR and bone

grafting 4/10/04 and my recovery has been slow.

I’m glad that you feel it was a good

thing to do- I don’t see it that way at the mo.

Jo

From:

le [mailto:kitchengifts4u@...]

Sent: 04 February 2005 13:33

Joint Replacement

Subject:

newbie

Just wanted to introduced myself. My name is

Dani and I'm 30 years

old. I had a total hip replacement in

2001. I think it's the best

thing I ever did. I'm looking forward to

getting to know people who

understand the daily trials I go through.

Be your own

advocate! The best patient is an informed patient!

--

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February 8, 2005

Thank you to all of you that gave me such a warm welcome. Some of

you asked for more background on me, so here goes....

When I was 12 years old, I dislocated my right hip. It wasn't

something that just suddenly happened. I limped around for a while

and my parents just thought I was doing it to get attention.

Finally, my dad took me to see a bone specialist and we found out the

truth. I had 3 pins put in my hip a week later with the hopes that

it would heal itself. It didn't. Nine months later I was told the

pins had to come out because they were causing other problems. I

eventually developed arthritis which destroyed what was left of my

hip. I was told I would have to have a replacement when I was done

growing. By the time I would have " finished growing " , I was working

a full time plus job in a restaurant, sometimes pulling 12 hour

shifts. I still didn't have enough money to get the surgery I needed

and state assistance was out of the question. I met a wonderful man

in 1999 that said he would take care of me. He watched me day after

day struggling to stand or walk and felt it would be best if I quit

my job. I still worked once in a while on a call in basis for about

a year until the place closed. Immediately, my mom started pushing

me to sign up for state assistance and disability since I was no

longer working. Luckily, I was approved for both. I had my

replacement in January of 2001. I was so scared, but I kept thinking

of the benefits. My fiance' had just bought me a new house and I

couldn't even take care of it or him. I couldn't walk in the grocery

store or anywhere else for that matter. I was told I would be in a

wheelchair by the time I turned 30. The recovery was hard, but worth

it. The pain from the arthritis went away and I felt better than I

had in years. I have recently developed arthritis in my knees, left

hip and lower back. Some days it's unbearable, but then I think

about where I was 4 years ago and just keep pushing. Everybody heals

differently. I wish everyone the best. Thank you for letting me

share.

Dani

February 11, 2005

Dear Dani,

Thankyou so much for sharing with us. Oh my--you have been through so

much and at such a young age. What has helped you get through it? I am

sure if I asked your fiancé, your Mom or your friends they could tell

us.

How frustrating (to put it mildly!) to have the new problems with

arthritis. I'm assuming you've tried glucosamine sulphate? It

certainly seems to work for some people in helping arthritic pain--was

amazing for my husband, but not so much for me. My cousin who is a vets

uses it on arthritic animals and finds it can help a lot. There have

also been good medical trials.

Some people also find different diets (usually non-inflammatory foods eg

cutting out acid fruits like oranges and tomatoes) help with

arthritis--but different things seem to work (or not) for different

people, so one needs to experiment. I found trying out different

arthritis diets helped me lose weight at least, which of course, helped

my arthritis. Am not convinced cutting out certain foods helped me

personally.

I also have arthritis in my back and use Pilates and

Technique. You probably don't have ' Technique' in the States?

I live in England. But I have found that by using my back differently

when sitting, standing and walking, it helps the Arthritis. Just

curious if you have tried any other non-medical things for your back?

Some people find gentle Yoga helpful as well. But all that doesn't help

your knees.

And finally, it is dreadful about needing 'assistance' or insurance for

operations. It is so good in England having the National Health

Service. Even though we all complain about aspects of it from time to

time, it is invaluable and does such good work.

Eleanor

Re: newbie