New to the group

[Guest guest]

I'm a mama, too, so I know it's not easy to not be afraid for your

child, but I'm also someone who was born with congenital cholesteatoma

(one ear only though), and I had no problems for 25+ years after my

childhood surgeries...my parents found the BEST surgeon - chief

otolaryngologist at Boston Children's - children were being flown in

from all over the world to see him...and it's really important to have

a skilled surgeon, because if they leave just one cell, the mass will

grow back.

I'm only on the boards now because I had repeated infections and

developed acquired cholesteatoma...what I've learned:

1. ALWAYS wear an ear plug in the shower or swimming. ALWAYS

2. NEVER skip a check-up - if the doc recommends every six months or

one year - go every six months. Avoiding infections is KEY to

avoiding the acquired version of this stupid thing.

3. Educate your daughter on her condition when she turns 21 (when she

starts being in charge of her own health, basically)...I grew up with

this condition, and I really don't know the details of the

surgeries/the condition of my ear, as it all happened when I was a

kid. She needs to be fully aware of her medical history so that she,

in turn, can brief her future otolaryngologists.

4. When she's picking her own ear doc - make sure she gets

recommendations/referrals, etc. Don't let her just pick the doc

that's most convenient to go to. I went to an ear doc last year -

with similar symptoms to what I'm having now...just based on his

proximity to where I lived. Guess what? He didn't dx the cholesteatoma.

All that being said, please be careful of what you read on the

Internet - most sites give a worst case scenario because they want to

scare people into getting treated. You are already taking control of

the situation, and getting her the best care you can. If you have any

fears, you should be able to bring them up to the surgeon. This is a

serious condition, but it IS curable through surgery.

My best wishes to your daughter... ((((hugs)))

>

> Hi everyone. My daughter is 15 yr old has never had any trouble with

> her ears or hearing (that we new of)until about five months ago. We

> found out she has congenital ctomas in both ears. she will have her

> first surgery in May. I had never even heard of this until a few weeks

> ago. I am scared to death. I'm tring to pray and believe god for a good

> out came. but, the more I read the more fear I have. No one said

> anything about skin grafts before. why would they need that? Does

> anyone have any advise for us? Thanks Christie

>

[Guest guest]

Hi, My son was diagnosed at 10mths of age with

congenital cholesteatoma. He is now 21 years old and

we have just found it has returned in his other ear.

I have found this site very supportive and

informative. I thought we were the only ones going

through this (up to date he has had 17 operations,

including, tonsils, adenoids, numerous

reconstructions, gromets (drainage tubes) etc_)

Apart from this he is in fine health. Hang in there,

it is a little scary, but knowing there are soo many

people out there and hearing there stories is somewhat

calming. regards judy (australia)

--- c_morton105 <c_morton105@...> wrote:

> Hi everyone. My daughter is 15 yr old has never had

> any trouble with

> her ears or hearing (that we new of)until about five

> months ago. We

> found out she has congenital ctomas in both ears.

> she will have her

> first surgery in May. I had never even heard of this

> until a few weeks

> ago. I am scared to death. I'm tring to pray and

> believe god for a good

> out came. but, the more I read the more fear I have.

> No one said

> anything about skin grafts before. why would they

> need that? Does

> anyone have any advise for us? Thanks Christie

>

>

>

Send instant messages to your online friends http://au.messenger.

[Guest guest]

Hi Christie,

A skin graft is usually needed to rebuild the eardrum because the c-toma often errodes the eardrum. My son was also 15 when his c-toma was diagnosed. My advice is to get your daughter to the best possible otologist to do the surgery so you can get it done right the first time. One with lots of experience in c-toma surgeries such as performing them weekly and not a few a year. I pray that your daughter does well with the surgeries.

Audrey

New to the group

Hi everyone. My daughter is 15 yr old has never had any trouble with

her ears or hearing (that we new of)until about five months ago. We

found out she has congenital ctomas in both ears. she will have her

first surgery in May. I had never even heard of this until a few weeks

ago. I am scared to death. I'm tring to pray and believe god for a good

out came. but, the more I read the more fear I have. No one said

anything about skin grafts before. why would they need that? Does

anyone have any advise for us? Thanks Christie

AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

[Guest guest]

>

> Hi Christie,

> A skin graft is usually needed to rebuild the eardrum because the

c-toma often errodes the eardrum. My son was also 15 when his c-toma

was diagnosed. My advice is to get your daughter to the best possible

otologist to do the surgery so you can get it done right the first

time. One with lots of experience in c-toma surgeries such as

performing them weekly and not a few a year. I pray that your

daughter does well with the surgeries.

> Audrey

>

> New to the group

>

> Hi everyone. My daughter is 15 yr old has never had any

trouble with

> her ears or hearing (that we new of)until about five months ago.

We

> found out she has congenital ctomas in both ears. she will have

her

> first surgery in May. I had never even heard of this until a few

weeks

> ago. I am scared to death. I'm tring to pray and believe god for a

good

> out came. but, the more I read the more fear I have. No one said

> anything about skin grafts before. why would they need that? Does

> anyone have any advise for us? Thanks Christie

>

>

>

>

______________________________________________________________________

__

> AOL now offers free email to everyone. Find out more about what's

free from AOL at AOL.com.

>

[Guest guest]

Thank you so much for the advise. But , I have a couple of questions if you don't mind. How old is your son now? How many surgeries has he had? Was the ctoma congenital? When will they tell us if we need the skin grafts. Does your son have good hearing now? Sorry, that alot of questions. I just have not talked to anyone that has had ctoma. I read alot of the enters but its not the same.aksmorrison@... wrote: Hi Christie,A skin graft is usually needed to rebuild the eardrum because the c-toma often errodes

the eardrum. My son was also 15 when his c-toma was diagnosed. My advice is to get your daughter to the best possible otologist to do the surgery so you can get it done right the first time. One with lots of experience in c-toma surgeries such as performing them weekly and not a few a year. I pray that your daughter does well with the surgeries.Audrey New to the group Hi everyone. My daughter is 15 yr old has never had any trouble with her ears or hearing (that we new of)until about five months ago. We found out she has congenital ctomas in both ears. she will have her first surgery in May. I had never even heard of

this until a few weeks ago. I am scared to death. I'm tring to pray and believe god for a good out came. but, the more I read the more fear I have. No one said anything about skin grafts before. why would they need that? Does anyone have any advise for us? Thanks Christie AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

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[Guest guest]

Hi Christie,

My son, was 14 when diagnosed. His ctoma

was not congenital. His ctoma was due to non functioning Eustachian tubes. It

required 5 surgeries to do all of the following: remove the ctoma, do the

reconstruction, then place the prosthesis (a titanium piston used to replace

the 3 small hearing bones) and finally place long term ear tubes in each ear.

He now wears 2 hearing aids and does

incredibly well. Without hearing aids he has about 50% hearing in each ear. He

received some excellent training from the school’s hearing impaired

teachers and had a wonderful audiologist. I would definitely encourage you to

take advantage of these resources.

’s doctor taught us not to look

too far ahead. To take each surgery as it comes and enjoy the time in between.

We have found that to be very sound advice.

Best wishes! You will find this group to

be an incredible resource fro your family.

From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of christie morton

Sent: Saturday, March 31, 2007

1:33 PM

cholesteatoma

Subject: Re: New

to the group

Thank you

so much for the advise. But , I have a couple of questions if you don't

mind. How old is your son now? How many surgeries has he had? Was the ctoma

congenital? When will they tell us if we need the skin grafts. Does your

son have good hearing now? Sorry, that alot of questions. I just have not

talked to anyone that has had ctoma. I read alot of the enters but its not the

same.

aksmorrisonaol

wrote:

Hi Christie,

A skin graft is usually needed to rebuild the eardrum because the c-toma often

errodes the eardrum. My son was also 15 when his c-toma was diagnosed. My

advice is to get your daughter to the best possible otologist to do the surgery

so you can get it done right the first time. One with lots of experience in

c-toma surgeries such as performing them weekly and not a few a year. I pray

that your daughter does well with the surgeries.

Audrey

New to the group

Hi everyone. My daughter

is 15 yr old has never had any trouble with

her ears or hearing (that we new of)until about five months ago. We

found out she has congenital ctomas in both ears. she will have her

first surgery in May. I had never even heard of this until a few weeks

ago. I am scared to death. I'm tring to pray and believe god for a good

out came. but, the more I read the more fear I have. No one said

anything about skin grafts before. why would they need that? Does

anyone have any advise for us? Thanks Christie

AOL now offers free email to everyone. Find out more about what's free

from AOL at AOL.com.

8:00? 8:25? 8:40? Find

a flick in no time

with the

Search movie showtime shortcut.

[Guest guest]

The skin graft proceedure is called a Tympanoplasty, and you can

probably just ask your doctor if s/he expected to do it. You should

also receive a whole bunch of consent forms before surgery that will

describe the proccedue(s) being done and risks and such. And any good

docor will go over everything with you beforehand and give you several

opportunities to ask questions.

To share our experience, my daughter is 6 and has failed hearing tests

for 2 years now. In December, we were finally sent to an otologist

who put a tube in her ear. During that surgery, he found the c-toma.

it was entirely along the bone - the little hearing bones had been

" protected " by scar tissue from past infections and eardrum ruptures.

She had her next surgery two weeks ago. She had a CWU Mastoidectomy

and Tympanoplasty. She is, right now, running through the backyard

playing some adventure game with her brothers. Within 3 days or

surgery, she was feeling well enough to go back to her normal routine.

As of now, her hearing has not returned in her bad ear. But we won't

know for sure until all the packing is gone. Her otologist said we

should not expect that she will get all her hearing back. He also

said we should realistically understand the real chance that she will

need another surgery before the c-toma is gone. His advice was to

have the CWU proceedure even though it has a higher reoccurance rate

because she is so young.

Hi Christie,

> A skin graft is usually needed to rebuild the eardrum because the

c-toma often errodes the eardrum. My son was also 15 when his c-toma

was diagnosed. My advice is to get your daughter to the best possible

otologist to do the surgery so you can get it done right the first

time. One with lots of experience in c-toma surgeries such as

performing them weekly and not a few a year. I pray that your daughter

does well with the surgeries.

> Audrey

>

>

>

> New to the group

>

> Hi everyone. My daughter is 15 yr old has never had any

trouble with

> her ears or hearing (that we new of)until about five months ago. We

> found out she has congenital ctomas in both ears. she will have her

> first surgery in May. I had never even heard of this until a few weeks

> ago. I am scared to death. I'm tring to pray and believe god for a good

> out came. but, the more I read the more fear I have. No one said

> anything about skin grafts before. why would they need that? Does

> anyone have any advise for us? Thanks Christie

>

>

>

>

>

>

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

> AOL now offers free email to everyone. Find out more about what's

free from AOL at AOL.com.

>

>

>

>

>

>

>

>

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

> 8:00? 8:25? 8:40? Find a flick in no time

> with the Search movie showtime shortcut.

>

[Guest guest]

Hi Vladimir,

Unfortunately I can't help you with your problem but I am hoping you

can give me your opinion. You said you are seeing Dr. Lustig at

UCSF. I am having my mastoidectomytympanoplasty done at UCSF on the

26th of this month. I am scheduled with Dr. Cheung. Have

you heard of him? Can you let me know what your opinion is of UCSF?

I have heard it is very good. I have a friend who's mom works there

and she swears by the bedside manner. I am of course very nervous

about the surgery and it would be nice to get an opinion from

someone local who has been there and dealt with some of the Dr's 1st

hand. Thanks a lot! Rebekah

>

> Hello everyone,

>

> My name is Vladimir, and a little bit about myself. I'm from

> California, and I'm 24 years old, I was diagnosed with congenital

> cholesteatoma in my left ear when I was about 4 years old, my

parents

> did not detect anything until the cholesteatoma had already torn

> through my eardrum. I was immediately given a radically modified

> mastoidectomy procedure to remove the cholesteatoma. When I was 9 I

> had a tympanoplasty performed in order to replace my missing

hearing

> drum with a prosthetic. Both of these procedures were performed by

Dr.

> Althaus. Following the procedure, and with regular

followups, I

> was able to keep everything under control. My hearing isn't 100%

> returned in my left ear, I have trouble hearing when there's a lot

of

> background noise, but I've also noticed that I have a better sense

of

> musical pitch in my affected ear, oddly enough.

>

> Unfortunately, about a year ago, my cholesteatomas had returned

with

> some pretty funky smelling drainage. Right now I am being seen by

Dr.

> Lustig over at UCSF Medical Center. We have been trying to

> clear it out non surgically, with some relative success. It's been

> about 2 months since my last appointment, and I am starting to feel

> like there's stuff in there again. I already try to do a body

> temperature solution of one part vinegar to one part rubbing

alcohol

> (as recommended by my doctor) to clean it out, however, is there

> anything else people know of that could maybe help the ear drain?

>

> Thanks

> -Vladimir

>

[Guest guest]

I haven't personally heard of Dr. Cheung at UCSF, however, I am very

happy with the treatment that I ahve been getting there, my doctor

only wants to resort to a third operation as a last chance effort.

He has been very optimistic about my treatment over the past year,

as have I. Before I had health insurance I was going to San

Francisco General Hospital, it was horrendous, I always felt like I

was being rushed along at SFGH.

Dr. Lustig has admitted he wouldn't mind going in for an operation

to basically reorient my mastoid bowl to see if that might help with

the drainage issues that I currently have. When I finally came to

UCSF, I was recommended to be seen by either Dr. Lustig or Dr.

Cheung. Given that UCSF is known as being one of the top medical

schools in the country, I don't think you'd have a problem with any

of the doctors. Best of luck with the operation!

> >

> > Hello everyone,

> >

> > My name is Vladimir, and a little bit about myself. I'm from

> > California, and I'm 24 years old, I was diagnosed with

congenital

> > cholesteatoma in my left ear when I was about 4 years old, my

> parents

> > did not detect anything until the cholesteatoma had already torn

> > through my eardrum. I was immediately given a radically modified

> > mastoidectomy procedure to remove the cholesteatoma. When I was

9 I

> > had a tympanoplasty performed in order to replace my missing

> hearing

> > drum with a prosthetic. Both of these procedures were performed

by

> Dr.

> > Althaus. Following the procedure, and with regular

> followups, I

> > was able to keep everything under control. My hearing isn't 100%

> > returned in my left ear, I have trouble hearing when there's a

lot

> of

> > background noise, but I've also noticed that I have a better

sense

> of

> > musical pitch in my affected ear, oddly enough.

> >

> > Unfortunately, about a year ago, my cholesteatomas had returned

> with

> > some pretty funky smelling drainage. Right now I am being seen

by

> Dr.

> > Lustig over at UCSF Medical Center. We have been trying to

> > clear it out non surgically, with some relative success. It's

been

> > about 2 months since my last appointment, and I am starting to

feel

> > like there's stuff in there again. I already try to do a body

> > temperature solution of one part vinegar to one part rubbing

> alcohol

> > (as recommended by my doctor) to clean it out, however, is there

> > anything else people know of that could maybe help the ear drain?

> >

> > Thanks

> > -Vladimir

> >

>

[Guest guest]

Hi ,

I was just wondering about the prosthesis placed in your son's ear.

Did it improve his hearing at all? I've heard that a prosthesis

properly connected should bring hearing back to normal.

Best wishes to your son!

Millie

[Guest guest]

>

> Hi I'm Crystal...new to the group, i found it on another person's

> website. I was finally daiagnosed with a cholesteatoma in the 4th

> grade after years and years and years of ear infection after ear

> infection,by the time they found mine it was a human hair line

from

> my brain!!! imagine being in the 4th grade and finding out that if

> you don't hav surgery next week, you might be brain dead in about

a

> month!!!! Well now i am in my last semester of college and 4

> surgeries later i am c-toma free!!! I had a plastic prosthetic but

> that caused too much static noise and ringing and now i have a

> titanium one...( which i highly recomend) i still have some static

> noise and a little ringing but not bad. I had about 50% hearing

loss

> still with the plastic one, but with the titanium one i border

right

> at the low range of normal hearring and slight hearing loss. It

will

> get worse as i get older, but at least i've got it for the time

being.

> (And a few awesome scars) I have dealt with this all my

> life.......Kind of used to it now. My doctor is awesome....i would

be

> happy to refer anyone to him!! One of the best with years of

> experience just with cholesteatomas. I had the largest

cholesteatoma

> he said had ever seen in over 15 years of surgery!!! Sucked to be

me

> in the 4th grade. So if anybody has a question about it...i seem

to

> know alot about it!!! It can be tough to live with....but we make

it.

> It's just nice to talk to people who know what i have gone

through!!!

> Now i am in the medical feild and understand more about what was

> going on with me, which gives me some closure......makes upset

that

> none of the doctors caught it before it got that bad!!!

> Anyway....just thought i would tell part of my story!! Feel free

to e-

> mail anytime, i don't sleep much....so i check it freequently!!!

Talk

> to you later i guess!!!!! Crystal

>

Hi Crystal,

Oh! How I do hope you can shead some light!

My 8yr olg daughter Brieanna has been suffering nagging

ear infections for the past 4yrs. She had her first set of grommets

at around the age of five. Spat them out within 6weeks. Had another

set in and they lasted app 6mths.When they fellout the left ear was

100% the right was still down with no pain.We then went on a waiting

list for a more permanent grommet to be inserted which was app

18mths later.

That took up to last September 2006 when a new ENT had difficulties

in insetion and the drum seemed tucked back.The grommmet was however

still inserted and fingers were crossed. The mention of middle ear

diseased was discussed and we were now to wait.

I was concerned no hearing improvement and no discharge after

surgery. I the wanted everything check and in the Jan 07 went back.

Drops were given for two weeks to see if the grommet was just

blocked.

The decission was mine to either leave it and let the grommet

fallout or suricgaly remove, clean and replace now, which is what I

chose.

In that opp was discoved an extensive cholesteatoma, an ct scan

was ordered two days later.Back to the ENT and booked in for a

mastoidectomy in 4wks.That day is next week the 20th of April

07.Breianns see's the anaesthetist today.Im worried sick...

The ct scan reads something like this. " Ther is opaciication of

the middle ear cleft with complete opacif of the epitympanum aditus

and well develpoed mastiod air cell system. Expansile soft tissue

mas partially erodes, surrounds and displaces laterally the oss.

chain..... etc Comment: Extensive cholesteatoma within the meso- and

epitympanum with scutal of the mastiod antrum...

My main concern is obviously Brieanna getting through this as

quickly and painfree as possible.But I wonder what is life like

afterwards...Is water a big no no? Is surgery needed for the on

going cleaning? how uncomfortable is that? What are the percentage

of a re-accorance of amother developing ? and the left ear can that

get one?

I know some of these questions you can't answer. And I am

rambleing, But I'm a little " stressed " and worried.Please try and

get back to me ... I promise not ramble on .. And anyone else who

may need to contact me please do so.. it's so nice to support and

get support from other.......

[Guest guest]

>

> My 2 1/2 year old was just diagnosed with a congenital c'toma last

> month when he had tubes put in, we seen the

Otologist/Neurotologist we

> were referred to and he confirmed as a conginital c'toma in his

right

> ear. He said what he could see that it was about the size of a b-b

> but ordered a ct scan to determine the extent. He told us that

would

> determine how they would proceed with the operation. If it was not

> very extensive he would be able to go through his ear to operate.

If

> it was extensive he would make the incision behind his ear. Is

this

> what the difference is in CWU and CWD? Also does it being about the

> size of a b-b make that a small one? I also remember him saying

that

> it was in the anterior quaderant does any one know where that is in

> the ear. Thank you for any info you can give. I am so glad

there is

> someplace to ask questions. The ct scan is set for the 19th and

next

> appointment is the 23rd to discuss the ct.

>

> CATHY

>Hi ,

I'm new to this site today, My 8yr old was diagnosed 4wks

ago with a cholesteatoma in her right ear.The ENT was removeing a so

called blocked grommet and found it.My ENT will be performing cwd

which is more " intrusive " and radical but much safer for re-

accurance. There is a less likely hood of another growing. The ear

is larger and healthier.The mastiod bone is shaved dowm smooth so

the that no fragments can be left behind to re grow.My ENT said it's

better for kids to have this due to the high re-accorance in the

cwu.That is where the cannal is saved and entrance for the opp is

not htrough the back of the ear..Her opp is next week..........

Check out some medical web sites.. I can now understand why the

radical mastoidectomy is chosen for Breianna as hers is quite

extensive and has grown very quickly. All I pray for is no more

growths.If this means to do a CWD so be it... Good luck and stay

intouch...

karen

[Guest guest]

Did your daughter have ear problems prior to this? Was her congenital? Thanks for replying. coxearskaren <coxearskaren@...> wrote: > > My 2 1/2 year old was just diagnosed with a congenital c'toma last > month when he had tubes put in, we seen the Otologist/Neurotologist we > were referred to and he

confirmed as a conginital c'toma in his right > ear. He said what he could see that it was about the size of a b-b > but ordered a ct scan to determine the extent. He told us that would > determine how they would proceed with the operation. If it was not > very extensive he would be able to go through his ear to operate. If > it was extensive he would make the incision behind his ear. Is this > what the difference is in CWU and CWD? Also does it being about the > size of a b-b make that a small one? I also remember him saying that > it was in the anterior quaderant does any one know where that is in > the ear. Thank you for any info you can give. I am so glad there is > someplace to ask questions. The ct scan is set for the 19th and next > appointment is the 23rd to discuss the ct. > > CATHY >Hi , I'm new to

this site today, My 8yr old was diagnosed 4wks ago with a cholesteatoma in her right ear.The ENT was removeing a so called blocked grommet and found it.My ENT will be performing cwd which is more " intrusive" and radical but much safer for re- accurance. There is a less likely hood of another growing. The ear is larger and healthier.The mastiod bone is shaved dowm smooth so the that no fragments can be left behind to re grow.My ENT said it's better for kids to have this due to the high re-accorance in the cwu.That is where the cannal is saved and entrance for the opp is not htrough the back of the ear..Her opp is next week.......... Check out some medical web sites.. I can now understand why the radical mastoidectomy is chosen for Breianna as hers is quite extensive and has grown very quickly. All I pray for is no more growths.If this means to do a CWD so be it... Good luck and stay

intouch... karen Expecting? Get great news right away with email Auto-Check.Try the Beta.

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[Guest guest]

Hi there! My 6-year-old daughter is also being treated in NC! We are

over in Durham. Best of luck you you and your daughter.

Kim

>

> Hi Lynn thanks for the advice but I don't live in Atlanta, I live in

> North Carolina. My daugter is being seen by a ENT specialist at Wake

> Forest Babtist Medical Center which happens to be one of the best

> hospital in the United States. I trust him very much,but thanks anyway.

>

> Re: New to the group

> cholesteatoma

>

> <span><p><span><p>

>

>

> Tabitha,<BR>

> Good luck with this. & nbsp; I would echo what Sheri said and not

> hesitate<BR>

> even a minute to get the very best otologist you can find. & nbsp; It

> doesn't<BR>

> sound like the ENT was too on top of things, and to have

> cholesteatoma<BR>

> in both ears is rare even with a relatively rare disease. & nbsp; Hearing

> is<BR>

> so crucial to academic success, and my daughter has had some trouble<BR>

> with just a unilateral loss. & nbsp; Think of reconstruction now with

> the<BR>

> best person you can find as an investment (hearing aids cost $1600

> or<BR>

> so each).<BR>

> <BR>

> That sounds scary, but in fact there are some really great surgeons<BR>

> out there with phenomenal success rates, and people can often end up<BR>

> hearing almost as well as they did before. & nbsp; Just try to find one

> of<BR>

> those doctors. & nbsp; You can ask on the list for people near you--

> often<BR>

> there happens to be someone nearby, but I would also think a drive

> to<BR>

> Atlanta would be worth it if there's no one local.<BR>

> <BR>

> --Lynn<BR>

> <BR>

> PS- the surgery is not too bad for little ones, though they don't

> like<BR>

> the restrictions on activity afterwards.<BR>

> <BR>

> <BR>

> <BR>

> <BR>

>

>

> <!-- |**|begin egp html banner|**| -->

>

> <br><br>

> <tt>

>

[Guest guest]

> >

> > My 2 1/2 year old was just diagnosed with a congenital c'toma

last

> > month when he had tubes put in, we seen the

> Otologist/Neurotologist we

> > were referred to and he confirmed as a conginital c'toma in his

> right

> > ear. He said what he could see that it was about the size of a

b-b

> > but ordered a ct scan to determine the extent. He told us that

> would

> > determine how they would proceed with the operation. If it was

not

> > very extensive he would be able to go through his ear to

operate.

> If

> > it was extensive he would make the incision behind his ear. Is

> this

> > what the difference is in CWU and CWD? Also does it being about

the

> > size of a b-b make that a small one? I also remember him

saying

> that

> > it was in the anterior quaderant does any one know where that

is in

> > the ear. Thank you for any info you can give. I am so glad

> there is

> > someplace to ask questions. The ct scan is set for the 19th

and

> next

> > appointment is the 23rd to discuss the ct.

> >

> > CATHY

> >Hi ,

> I'm new to this site today, My 8yr old was diagnosed

4wks

> ago with a cholesteatoma in her right ear.The ENT was removeing a

so

> called blocked grommet and found it.My ENT will be performing cwd

> which is more " intrusive " and radical but much safer for re-

> accurance. There is a less likely hood of another growing. The

ear

> is larger and healthier.The mastiod bone is shaved dowm smooth so

> the that no fragments can be left behind to re grow.My ENT said

it's

> better for kids to have this due to the high re-accorance in the

> cwu.That is where the cannal is saved and entrance for the opp is

> not htrough the back of the ear..Her opp is next week..........

> Check out some medical web sites.. I can now understand why

the

> radical mastoidectomy is chosen for Breianna as hers is quite

> extensive and has grown very quickly. All I pray for is no more

> growths.If this means to do a CWD so be it... Good luck and stay

> intouch...

> karen

>

>

> Hi , yes she did.Her 1st set of grommets were app 4yrs ago,

they fellout within 6wks, second lot she kept for 3mnths. Her left

ear came good and we decided to wait to see what the right ear would

do. 18mths of glue, no pain and dull hearing. Sep 06 another

grommetin right ear only,ENT found it difficult to insert,skinny ear

cannal and drum tucked around the conner HMMMM.... No discharge

after op, no difference in Brieannna's hearing. Jan 07 I was'nt

happy, returned to check -up what was going on. Drops to try and

clear the blockage (2wks) did'nt work. I oppted for the removal and

re-insertion of the grommet. He then found the growth.

Breianna's due her op on 20 th.. My main concern now (after how

sad I have been to her lack of hearing that will no doubt be forever)

is just a healthly ear and to hopefully never have to go through

this op again. I pray to all my heavenly angels.....

>

>

>

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

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>

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

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>

[Guest guest]

>

> Hi! I'm new to the group. I was very happy to find 's web

site

> and other people that are going through the same things. Then I

> found the link to this group! I'm trying to 'talk to' as many

people

> about this as I can and learn as much as I can.

>

> My 6 year old son, Vinny, was diagnosed recently with congenital

> cholesteatoma in his left ear. This, after years of ear

infections,

> etc., and my husband and I finally talking his pediatrician into

> referring him to a specialist (again). We've since switched

> pediatricians.

>

> He goes in for his surgery on November 5th, and they expect to do

the

> second surgery about 6 months later. We'll find out more

specifics

> when we meet again with the surgeon on the 26th of October. I

have

> to admit, it scares me alittle (more than a little) to think that

he

> may go through this numerous times in his life, but I have to keep

> telling myself that the alternative is much scarier.

>

> I look forward to getting to know some of you. I'll be checking

by

> the site everyday!

>

> Mazzarell

>

Hi , I have only just found this site this week 11 april 07. I

was woundering how the op went! Is it what you expected ? and hows

? My daughter 8yrs is in for her ctoma removal op next week the

20th April... I'm scared stiff....

[Guest guest]

This is indeed a very confusing disease. My husband was diagnosed

last August at an annual physical (he is 63). There were no

symptoms, his WBC was just way up around 28K. This disease is one

where they say to " watch and wait " , there really is no benefit of

immediate treatment (very hard to understand). I doubt your mother

is stage III or IV, my husband had an enlarged spleen when he first

went to MD and they diagnosed him as stage 2. The first

treatment is ususally the most successful and they have a 95% chance

of putting it into remission for 2 - 7 years. New medications are

coming out all the time that are continually improving.

I am a fanatic on doctors, so one of our doctors is Dr.

O'Brien at M. D. in Houston (she is one of the best) and we

actually fly from California to see her about every 6 months. Our

California doctor was much more aggressive in wanting to start

treatment than she was. My husband's spleen has been growing and

his WBC is now up to 68K. We are starting treatment at a clinical

trial at MDA. Actually, we receive the normal treatment FCR,

however, the " clinical trial " is adding leukerine to the mix. This

is a shot given for 7 days each month starting the first day of

treatment. This drug has been in use since 1991, however, has never

been used for the treatment of CLL before. The idea is that it will

improve the immune system while you are going through the

treatments. Our doctor out here seems very excited about it.

I would encourage you to get a doctor who is familiar with this

disease. There are only about 7,000 cases a year diagnosed in the

US, so many doctors are not well informed. Don't think you need to

go to the extreme we went to of flying to Houston, however, for us

it was the right decision, we feel very comfortable with Dr. O'Brien.

i wish you well, we are still learning. This support group has been

a great resource for us.

>

> Hi, I have just joined the group as my mom, 68 years old, was just

diagnosed with CLL/SLL via bone marrow biopsy. I was just wondering

if I could ask a few questions as I'm confused on the staging

system. My mom was just having routine bloodwork and they noticed

her blood counts were down, hgb 10. They thought maybe she was

bleeding somewhere and did gastrointestinal workup. The GI Dr

noticed that her spleen was enlarged on exam, but not bleeding from

anywhere. CT scan was done I think if abdomen, with nothing else

seen except enlarged spleen. She finally pushed for hematologist

work up, who finally did a bone marrow biopsy due to nothing else

showing up (her WBC counts are normal). She has no other symptoms.

So, looking at the staging, it looks like she is already at stage

III or IV due to the anemia and splenomegaly, but it seems wierd

that her WBC counts are not up. From everything I read, it seems

like they are starting treatment at stage III or IV, but the Dr

> said they would wait for symptoms. (He just mentioned this over

the phone when telling her about the biopsy report, but we have an

appointment next week to talk things over). Does anyone have any

input for us???

>

>

>

[Guest guest]

I am in Portland and had the band done 6-4-07. I am down about 14 lbs.

>

> Hi I am .....I had my lap band done by Dr. Aceves on 05/15/2007.

> My mom my mom's best friend and I all had it done the same day! It

> was great. I am down around 40lbs and still going down. I just want

> to say that this has been a great experience and I would recommend it

> to anyone who asked. And I have hahahah..... Does anyone know of a

> group that meets in Vancouver WA or somewhere near it. I would like

> to get to know some more people with the band in my area. Thanks,

> Glad I found this group....

>

[Guest guest]

Hi

I'm not sure if you mean Vancouver BC or Vancouver WA....

If you mean BC, then you're in luck

We have just started a LapBand Support group in North Vancouver and

had our first meeting last month, there were only 4 of us, but

hopefully with time and word-of-mouth our group will grow.

For now, we are having 1 meeting a month....the 3rd wednesday of

every month....at Lions Gate Hospital in North Van. It is from 7-

8pm and everyone is welcome !!!

The next meeting will be Wednesday July 18th....hope to see you

there !!!

If you have any questions, feel free to contact me privately or post

here.

11/16/06

306/227/175ish

canadagirl33@...

[Guest guest]

Dang, no I meant Vancouver WA....Good luck with your band! Have a

great 4th....

----entire quoted post snipped by moderator---

[Guest guest]

Congrats! So do you know of any support groups in the Vancouver WA

area? I would like to find one. I know of one in Longview, I guess i

can go there! Happy losing! Gee I really love the band....

> >

> > Hi I am .....I had my lap band done by Dr. Aceves on 05/15/2007.

> > My mom my mom's best friend and I all had it done the same day! It

> > was great. I am down around 40lbs and still going down. I just want

> > to say that this has been a great experience and I would recommend it

> > to anyone who asked. And I have hahahah..... Does anyone know of a

> > group that meets in Vancouver WA or somewhere near it. I would like

> > to get to know some more people with the band in my area. Thanks,

> > Glad I found this group....

> >

>

[Guest guest]

There is a Oregon/SW Washington group that has a message board and

usually gets together monthly at different locations, usually in the

Portland area, although we are open to other places. There are

several members in the Vancouver are so it would be great to have a

meeting there! \ There is also a group that meets in Longview the

first Tuesday of every month. You can join this group at this address.

OregonBandsterSupport-subscribe

If you have any questions please feel free to email me! Sandi G

>

> Dang, no I meant Vancouver WA....Good luck with your band! Have a

> great 4th....

>

> ----entire quoted post snipped by moderator---

>

[Guest guest]

Good day all. My name is Rich and I am a cancer survivor. My cancer was

discovered in July of 2005. Stage II Squama cell in my left tonsil and left neck

lymph nodes.

I had my 9 week chemo and radiation done at Mass. General in Boston and neck

disection next store at Mass. Eye & Ear Infirmary.

Dr.'s and Busse at MGH and Dr. Rocco at ME & E.

I survived the treatment and currently cancer free 1 1/2 years.

Taste buds are at 60%+/- and saliva glands 60%+/-.

I have lots of energy for 57yrs. old!

If I can be of any help to anyone please feel free to email me.

I'm also moderator on an AtrialFibrillation support group. But cured of

that ailment as well.

Thank you for listening.

Rich

**************************************

Get a sneak peek of the all-new

AOL at http://discover.aol.com/memed/aolcom30tour

[Guest guest]

Hi Rich,

I am also new to these groups and this is the first time I am

writing.

First to wish you good health and all your future tests and results

to be to the most satisfaction.

I am cancel survivor (if I can use this word as they usualy use it

for the people who pass 5 years after discovering the cancer) , like

you I was diagnozed in July 2005 with brest cancer, I passed the

whole horror of surgery, himeotherapy , radiation and now I am on

Tamoxifen.

Now I am in good situation and and I do not have any complaints, but

still I remember how horible for me was all above experience, forgot

to mention I am 47 years old.

I would like to comunicate with other people who are intersted in t

his subject and can share their experience and advises and give

their support.

have a nice day

(excuse my mistakes as I am foreigner - Bulgarian, so English is not

my native).

Nelly

>

> Good day all. My name is Rich and I am a cancer survivor. My

cancer was

> discovered in July of 2005. Stage II Squama cell in my left tonsil

and left neck

> lymph nodes.

> I had my 9 week chemo and radiation done at Mass. General in

Boston and neck

> disection next store at Mass. Eye & Ear Infirmary.

> Dr.'s and Busse at MGH and Dr. Rocco at ME & E.

> I survived the treatment and currently cancer free 1 1/2 years.

> Taste buds are at 60%+/- and saliva glands 60%+/-.

> I have lots of energy for 57yrs. old!

> If I can be of any help to anyone please feel free to email me.

> I'm also moderator on an AtrialFibrillation support group.

But cured of

> that ailment as well.

> Thank you for listening.

> Rich

>

>

> **************************************

> Get a sneak peek of the all-new

> AOL at http://discover.aol.com/memed/aolcom30tour

>

>

>

[Guest guest]

Nelly,

I was amazed by your english. You did very well at introducing yourself. Sorry

you had to go thru the conventional cancer treatment. I'm researching all

alternative treatments to the dismay of my surgeon as he wants me under the

knife right away.

I've put my GIST tumer into a beniegn state using

1. Dr Joanna Budwig's cancer diet

2. Zeolite (still unsure of this one)

3. Oxy-e

4. Green Tea extract

5 AHCC

6. Latest! I Brewed up some Oleander Soup last night and i am taking very small

amounts of that. It may be the best strategy yet.

Still haven't shrunk the tumer! I will let everyone in the group know when I'm

successful.

Another person new to the group. Not yet a survivor like you!

Bill

Re: New to the group

Hi Rich,

I am also new to these groups and this is the first time I am

writing.

First to wish you good health and all your future tests and results

to be to the most satisfaction.

I am cancel survivor (if I can use this word as they usualy use it

for the people who pass 5 years after discovering the cancer) , like

you I was diagnozed in July 2005 with brest cancer, I passed the

whole horror of surgery, himeotherapy , radiation and now I am on

Tamoxifen.

Now I am in good situation and and I do not have any complaints, but

still I remember how horible for me was all above experience, forgot

to mention I am 47 years old.

I would like to comunicate with other people who are intersted in t

his subject and can share their experience and advises and give

their support.

have a nice day

(excuse my mistakes as I am foreigner - Bulgarian, so English is not

my native).

Nelly

>

> Good day all. My name is Rich and I am a cancer survivor. My

cancer was

> discovered in July of 2005. Stage II Squama cell in my left tonsil

and left neck

> lymph nodes.

> I had my 9 week chemo and radiation done at Mass. General in

Boston and neck

> disection next store at Mass. Eye & Ear Infirmary.

> Dr.'s and Busse at MGH and Dr. Rocco at ME & E.

> I survived the treatment and currently cancer free 1 1/2 years.

> Taste buds are at 60%+/- and saliva glands 60%+/-.

> I have lots of energy for 57yrs. old!

> If I can be of any help to anyone please feel free to email me.

> I'm also moderator on an AtrialFibrillation support group.

But cured of

> that ailment as well.

> Thank you for listening.

> Rich

>

>

> **************************************

> Get a sneak peek of the all-new

> AOL at http://discover.aol.com/memed/aolcom30tour

>

>

>