new to this

July 11, 2000

Dear Jayne,

I'm not a doc - just a " veteran " parent of a child with these awful

diseases...

A negative test means nothing - as testing is poor & " reporting " is at most

labs rather arbitrary (to be kind)... Lack of rash means nothing to us

either - we've never even seen a tick, let alone a rash. (Flies also

transmit & most docs / pathologists / vets believe ANY insect that " bites for

blood " will transmit if they themselves are infected...)

As for thigh / back pain - have you ever heard lyme referred to as " the great

immitator? " It's because it seems to manifest differently in different

people. Seems I've read somewhere that in late stage dissemenated lyme,

there tends to be magnesium deficiency. Anyone - could this be causing the

leg pains? Could it be babesia (a " co-infection " - protazoa, akin to

malaria)? I wonder because our pharmacist was telling us that quinine (a med

used for malaria / babesia) was sold over-the-counter for many years until

our friends at the FDA decided it really wasn't helping the *leg cramps*

people purchased it for... This lady's dad used it for 40 years for leg

cramps and it always helped him. (Just a thought...)

My daughter was completely out of school for a whole semester & never had any

arthritic problems (thank GOD!).

Where were your tests sent? Seems, due to greed & egos, most labs are not

what I would consider " reliable " - we had tests sent to 4 different labs

within a 3-day period. All negative except two; the one was a local hospital

lab; the other IgeneX in CA. (Website is Igenex.com, if interested. Only

independent lab in country - so I've been told - not owned by, nor controlled

by insurance companies, doctors, etc...)

Also, at least in dogs with ehrylichia (rickettsia, akin to Rocky Mountain

Spotted Fever), the antibodies drop in their systems. Only a RELIABLE,

quality lab - one which reports the actual numerical reaction dilution -

found this particular problem in our dog. (Ehrylichia is yet another

" co-infection " - interestingly, pathologists are not finding much lyme in

dogs - at least in our area (IL) - but LOTS of ehrylichia.)

Hope this helps!

Blessings,

Chris

In a message dated 07/11/2000 4:10:54 PM Central Daylight Time,

sherman.fam@... writes:

<< No one has bothered to retest me until now after running a fever that

took three weeks to pass. I don't know what to think now. I am more

confused then ever. I have no memory problems, that I can think

of..have no knee/shoulder/elbow problems. My problems are with my

lower back. Throbbing pain that hits me like a brick. Oh and my

thighs hurt so bad when trying to sleep. The thigh thing has been a

mystery to everyone. Actually it is ignored when brought up. I am

34

with small children..and have zero energy. I just don't know what to

think.....................I really don't. Thanks again,

Jayne

>>

July 11, 2000

Hi Jayne,

In my opinion there are more false-negative tests than false-positive for

Lyme disease. Both the ELISA and the Western Blot have been known to be

unreliable, Lyme disease is a clinical diagnosis, based solely on symptoms and

whether or not you live in an endemic area for ticks (which is just about every

where now). If you get a copy of your lab work you will probably see a

disclaimer from the lab advising that a negative test does not rule out Lyme

disease. I copied the paragraph below from the FDA site, I keyed in Lyme in the

search area.

http://www.fda.gov/search.html

There are blood tests to check for antibodies to the bacterium that causes

<Lyme> disease. The tests, however, are not useful if done soon after a tick

bite, because it takes 2 to 5 weeks after being bitten by an infected tick for

antibodies to develop. Even when an antibody (blood) test is done later, the

result alone does not reliably predict the presence or absence of <Lyme>

disease. (See " How is <Lyme> disease diagnosed? " below.) The Food and Drug

Administration (FDA), which regulates diagnostic tests for <Lyme> disease, has

cleared for commercial sale and distribution only blood tests for antibodies

that may be present in <Lyme> disease. Tests for <Lyme> disease that use urine

or other body fluids have not been cleared by FDA.

<Lyme> disease can be difficult to diagnose, because its symptoms mimic those of

other diseases. For example, the fever, fatigue, and muscle aches can be

mistaken for influenza or infectious mononucleosis. Joint pain can be mistaken

for rheumatoid arthritis and neurologic signs for multiple sclerosis.

Conversely, other types of arthritis or neurologic diseases can be misdiagnosed

as <Lyme> disease.

To make a diagnosis of <Lyme> disease, the following should be considered:

a.. a history of possible tick bite, especially in areas of the country

known to have <Lyme> disease;

b.. symptoms; and

c.. results of blood tests done at least 5 weeks after the tick bite to

determine if antibodies to the bacterium Borrelia burgdorferi are present in the

patient.

Blood tests are most useful in the later stages (greater than 1 year) of

untreated <Lyme> disease, but even then results may be inaccurate. To improve

the reliability of these tests, FDA supports the Centers for Disease Control and

Prevention (CDC) recommendation for two-step testing and interpretation of

results. This means that if the first test for antibodies to the <Lyme> disease

bacterium is positive or equivocal (uncertain), a second test (called a " western

blot " ) should be performed to verify the presence of specific antibodies to the

bacterium. If the results of the first test are negative but symptoms persist,

the doctor may want to retest at a later date.

Unfortunately not everyone gets the tell-tale bulls eye rash, and it is not

always oval or round and may appear anywhere on the body, even away from the

known tick bite. Since you are aware of tick bites and have a form of

arthritis, I would suggest you research Lyme disease more thoroughly and talk to

your doctor about antibiotic treatment.

Marta

-----Original Message-----

From: Jayne <sherman.fam@...>

>Hi..I am new to this group but not to egroups...I have a question. I

>was tested for lymes recently because of fevers...although I have

>already been diagnosed with psoriatic arthritis....the first lymes

>test came back positive. It was the standard test. Yesterday I had

>a

>western blot...waiting for that to come back. My question is,

>everything I read...seems to make me think there are alot of false

>results. Should I be worried? I never recall a bulls eye

>rash..although I have been bitten by ticks before.

>So are there any reasons why one would test positive to the

>antibodies

>and not have the disease. Thanks for any info.

>Jayne

July 11, 2000

Hi Jayne and Welcome,

My 2 cents worth...there seem to be more false negatives than false

positives. The false positives are usually due do cross-reactions with

Epstein-Barr antibodies (Mono) and Syphyllis (sp?)...also lab errors.

Most of us on the list have tested negative for Lyme disease at one time

or another even though we have it, and would be thrilled to get a

positive test result so that we could get the treatment that we deserve.

The fact that you did not get a bulls-eye rash doesn't mean anything,

but being bitten by ticks does. Please follow up and let us know what

happens.

Joan LI NY

July 5, 2001

Hey Trish,

I wanted to mention one thing about the allergies. I found that I had

become allergic to some foods (like eggs) b/c I ate them so often. If I

avoided them for a few weeks, I found out that I could handle them, but only

every once in a while. I try to always rotate foods like I've heard

suggested, and that seems to help. It was a pleasant surprise to find out

that I wasn't allergic to all the foods that I thought I was (although that

wasn't true for every single one.) All the best.

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

February 18, 2002

Hi,

Welcome to the group! You've come to the right place for

information, support and understanding.

I missed a week of work after my surgery. I think some people go

back sooner than that and if you are dizy and off balance - it may

take a little longer.

Can you find out how many of these surgeries your ENT has done?

It's very important to have a surgeon who does a whole lot.

My ENT doesn't do very many and I asked him to refer me to someone

else. He didn't mind at all and he sent me to a fantastic doctor.

The right doctor can make a difference in your recovery and the

success of your surgery. Of course there are no guarantees, but it

is a good idea to do everything you can do. (that doesn't make a lot

of sense, I hope you understand what I mean!!)

Good Luck and please keep us posted,

>

> Hi

>

> I'm new to this whole ear /c-toma story.

>

> I am 15 and a half and last week my GP sent me to the ENt who sent

me

> to the Hospital ENT department, and after examinations ,tests,

scans

> etc they told me I had cholesteatoma ( I cant even pronounce it

never

> mind spell it.)

>

> My mum found me some information on the net and I understand the

> basics of what it is, and how it got there.. I think, apparently

from

> what I can gather is that mine is both congenital and

> aggravated/caused by serious infections. I dont think they really

> know themselves !!!!

>

> To get it out they are going to operate, it has destroyed nearly

all

> of the bones in my ear, and has also destroyed the bone between my

> ear and my brain. They say that I will be completely deaf in that

ear

> after the operation and also that I will be very dizzy and off

> balance for a long time.

>

> Up until last week I felt pretty alright, I have had problems with

a

> headache almost every day in the afternoon, which is initially why

I

> went to the doctor, and obviously I have had bad ear infections on

a

> regular basis, they said it was swimmers ear. Only on odd

occassions

> I felt dizzy, ususly from lying or sitting down to standing up, but

> in the last week or so I have felt more and more dizzy and very

> yucky, also my headaches are getting worse. Am I just more aware of

> it, or does this thing get worse ?

>

> I have two weeks to go until I have my first operation and to tell

> the truth I am very very scared !!!! I have never had an operation

of

> any kind before, apart from the ear infections I have always been

> pretty healthly, even with the ear infections I hardly ever missed

a

> day of school, I miss more days of school with sports activities

than

> being ill. I love going to school, you know, the social side, so I

> hate being away from my friends.

>

> Does it hurt for a long time after the operation, and how long will

I

> have to be away from school. They just tell me it depends on how

> quick I recover from the operation.. that doesn't give me an idea

> because I dont know anyone with this condition so I have no-one to

> ask.

>

> Also I am a bit worried about the dizziness and off balance side of

> things, I play league tennis pretty high up in the divisions and I

> would really like to get back up there as soon as I can. I mean I'm

> not going to Wimbledon type of thing, but I love my tennis.

>

> I would appreciate anything anyone can tell me about this,

especially

> about the operation.

>

> Thank you

February 19, 2002

At 01:27 AM 2/19/2002 +0000, you wrote:

>Hi

>

>I'm new to this whole ear /c-toma story.

>

>I am 15 and a half and last week my GP sent me to the ENt who sent me

>to the Hospital ENT department, and after examinations ,tests, scans

>etc they told me I had cholesteatoma ( I cant even pronounce it never

>mind spell it.)

You spelled it just fine.

>My mum found me some information on the net and I understand the

>basics of what it is, and how it got there.. I think, apparently from

>what I can gather is that mine is both congenital and

>aggravated/caused by serious infections. I dont think they really

>know themselves !!!!

Nobody really knows what causes or aggravates this condition, but it's

believed that it's either congenital or caused by some sort of Eustachian

tube (between inner ear and throat, purpose is to equalize pressure in the

ear) dysfunction.

>To get it out they are going to operate, it has destroyed nearly all

>of the bones in my ear, and has also destroyed the bone between my

>ear and my brain. They say that I will be completely deaf in that ear

>after the operation and also that I will be very dizzy and off

>balance for a long time.

Mine had destroyed all of the bones, too. My ENT was able to go back six

months later and implant a prosthesis which replaced these bones--bringing

back almost all of my hearing. Has anyone mentioned this to you? Also,

some people report dizziness, some do not. I don't think it is an absolute

that you will be dizzy, but there is a chance.

Why on earth are they waiting two more weeks when it's that close to your

brain?!

>Up until last week I felt pretty alright, I have had problems with a

>headache almost every day in the afternoon, which is initially why I

>went to the doctor, and obviously I have had bad ear infections on a

>regular basis, they said it was swimmers ear. Only on odd occassions

>I felt dizzy, ususly from lying or sitting down to standing up, but

>in the last week or so I have felt more and more dizzy and very

>yucky, also my headaches are getting worse. Am I just more aware of

>it, or does this thing get worse ?

It definitely gets worse and is nothing to mess around with.

>I have two weeks to go until I have my first operation and to tell

>the truth I am very very scared !!!! I have never had an operation of

>any kind before, apart from the ear infections I have always been

>pretty healthly, even with the ear infections I hardly ever missed a

>day of school, I miss more days of school with sports activities than

>being ill. I love going to school, you know, the social side, so I

>hate being away from my friends.

Of course you're scared. A lot of us have been through this and come out

the other side just fine. You have all of us to talk to and vent with and

listen to your fears. Can your friends come visit you?

>Does it hurt for a long time after the operation, and how long will I

>have to be away from school. They just tell me it depends on how

>quick I recover from the operation.. that doesn't give me an idea

>because I dont know anyone with this condition so I have no-one to

>ask.

I hardly had any pain. I'm a big wimp and this was by far the least

painful surgery I've ever had and I've had lots. I do get sick from

anesthesia, but that's a different story. Everyone is different in that

respect. I felt fairly good after just a couple of days.

>Also I am a bit worried about the dizziness and off balance side of

>things, I play league tennis pretty high up in the divisions and I

>would really like to get back up there as soon as I can. I mean I'm

>not going to Wimbledon type of thing, but I love my tennis.

>

>I would appreciate anything anyone can tell me about this, especially

>about the operation.

Playing tennis again is a goal you can work toward.

Have you checked out some of the case histories on the

http://www.cholesteatoma.org web page? They might give you a better idea

of what to expect.

What's your name? Please, feel free to share with us anything you want any

time. That's why we're all here.

Diane Brunet

http://www.sassysuds.com

http://www.inetworld.net/dlb2

>Thank you

>

February 19, 2002

Hello,

I was 14 when they found mine so I know how you feel. Trust me you

are much more knowledgable than I was back then, I don't think I

fully understood what it was about until afterwards when a nice

doctor drew a diagram on the back of my notes for me.

I had headaches too, but not too bad, it was mainly the gunk and the

earache which made me (and my mum mainly) notice that there was

something bad wrong.

It does get worse, but then you are probably more aware of it being

there now too. I know it was all i could think about at the time.

I was like you, never missed school, but unlike you didn't really

care about the sport! Can't say PE was my favourite subject

Mine didn't hurt that much afterwards. I was doped up to the eyeballs

though. Make sure you ask if you have any questions, my mum was extra

nice to the nurses and they used to get me extra jelly and ice cream

etc. The worst thing for me was the bandage is fairly uncomfy, and

its hard to sleep at first. Also they will probably pack your ear

afterwards, don't be alarmed when the take it out, they didn't tell

me that it looks longer than it actually is! It seemed like miles but

that is fine.....

I had about a week off. I got bored and lonely after that, make sure

you get your friends to come round, and buy lots of top notch

magazines and stuff.

All I can say is keep yourself as busy as possible, its worse if you

are just waiting around for it to happen. Remeber its okay to be

scared, and there's lots of people who understand right here. I

really wish this had existed 9 years ago!

Take care of yourself, and get yourself lots of hugs, that's the best

thing

Suzannah

February 19, 2002

Would those of you who have had artificial hearing bones put in please tell me about the outcome? My son's cholesteatoma had eroded 2 of the hearing bones and they had to remove the third one. He has no hearing in his that ear at all and I am hoping that they can restore at least some hearing. So far, all the people I have spoken to who have artificial hearing bones have not had good results or any hearing restored.

Thank you so much!!

-----Original Message-----From: melissa2541 [mailto:melissa2541@...]Sent: Monday, February 18, 2002 9:36 PMcholesteatoma Subject: Re: New to thisHi,Welcome to the group! You've come to the right place for information, support and understanding.I missed a week of work after my surgery. I think some people go back sooner than that and if you are dizy and off balance - it may take a little longer.Can you find out how many of these surgeries your ENT has done? It's very important to have a surgeon who does a whole lot. My ENT doesn't do very many and I asked him to refer me to someone else. He didn't mind at all and he sent me to a fantastic doctor.The right doctor can make a difference in your recovery and the success of your surgery. Of course there are no guarantees, but it is a good idea to do everything you can do. (that doesn't make a lot of sense, I hope you understand what I mean!!) :)Good Luck and please keep us posted,> > Hi> > I'm new to this whole ear /c-toma story.> > I am 15 and a half and last week my GP sent me to the ENt who sent me > to the Hospital ENT department, and after examinations ,tests, scans > etc they told me I had cholesteatoma ( I cant even pronounce it never > mind spell it.)> > My mum found me some information on the net and I understand the > basics of what it is, and how it got there.. I think, apparently from > what I can gather is that mine is both congenital and > aggravated/caused by serious infections. I dont think they really > know themselves !!!!> > To get it out they are going to operate, it has destroyed nearly all > of the bones in my ear, and has also destroyed the bone between my > ear and my brain. They say that I will be completely deaf in that ear > after the operation and also that I will be very dizzy and off > balance for a long time.> > Up until last week I felt pretty alright, I have had problems with a > headache almost every day in the afternoon, which is initially why I > went to the doctor, and obviously I have had bad ear infections on a > regular basis, they said it was swimmers ear. Only on odd occassions > I felt dizzy, ususly from lying or sitting down to standing up, but > in the last week or so I have felt more and more dizzy and very > yucky, also my headaches are getting worse. Am I just more aware of > it, or does this thing get worse ? > > I have two weeks to go until I have my first operation and to tell > the truth I am very very scared !!!! I have never had an operation of > any kind before, apart from the ear infections I have always been > pretty healthly, even with the ear infections I hardly ever missed a > day of school, I miss more days of school with sports activities than > being ill. I love going to school, you know, the social side, so I > hate being away from my friends.> > Does it hurt for a long time after the operation, and how long will I > have to be away from school. They just tell me it depends on how > quick I recover from the operation.. that doesn't give me an idea > because I dont know anyone with this condition so I have no-one to > ask. > > Also I am a bit worried about the dizziness and off balance side of > things, I play league tennis pretty high up in the divisions and I > would really like to get back up there as soon as I can. I mean I'm > not going to Wimbledon type of thing, but I love my tennis.> > I would appreciate anything anyone can tell me about this, especially > about the operation.> > Thank you

February 20, 2002

" A. Behr " <behr@...> writes:

> Would those of you who have had artificial hearing bones put in

> please tell me about the outcome? My son's cholesteatoma had eroded

> 2 of the hearing bones and they had to remove the third one. He has

> no hearing in his that ear at all and I am hoping that they can

> restore at least some hearing. So far, all the people I have spoken

> to who have artificial hearing bones have not had good results or

> any hearing restored.

I had the anvil bone replaced in my left ear. I asked the consultant

what he'd used to replace it with, and he said it was a synthetic

material with bone like qualities.

That was 3 months ago, and until I got this cold I had pretty good

hearing in that ear (I'd venture 95%). Perhaps the success rate is

higher when only the anvil requires replacing?

--

Pete

February 20, 2002

Sassy Suds <Diane@...> writes:

> Nobody really knows what causes or aggravates this condition, but it's

> believed that it's either congenital or caused by some sort of Eustachian

> tube (between inner ear and throat, purpose is to equalize pressure in the

> ear) dysfunction.

That's strange. I was under the impression (based on reading various

web sites about the condition, and from what my consultant has said)

that the causes of c-toma where pretty much understood, except where

congenital c-toma is concerned.

Most websites on the subject list 2 forms of acquired c-toma - the

first version is where the ear drum inverts, creating a pocket. The

second is when the ear drum is damaged (sometimes just by the

insertion of tubes).

I'm interested in knowing why you say that the causes aren't really

known.

--

Pete

February 20, 2002

>

> Hi

>

> I'm new to this whole ear /c-toma story.

>

> I am 15 and a half and last week my GP sent me to the ENt who sent

me

> to the Hospital ENT department, and after examinations ,tests,

scans

> etc they told me I had cholesteatoma ( I cant even pronounce it

never

> mind spell it.)

>

> My mum found me some information on the net and I understand the

> basics of what it is, and how it got there.. I think, apparently

from

> what I can gather is that mine is both congenital and

> aggravated/caused by serious infections. I dont think they really

> know themselves !!!!

>

> To get it out they are going to operate, it has destroyed nearly

all

> of the bones in my ear, and has also destroyed the bone between my

> ear and my brain. They say that I will be completely deaf in that

ear

> after the operation and also that I will be very dizzy and off

> balance for a long time.

>

> Up until last week I felt pretty alright, I have had problems with

a

> headache almost every day in the afternoon, which is initially why

I

> went to the doctor, and obviously I have had bad ear infections on

a

> regular basis, they said it was swimmers ear. Only on odd

occassions

> I felt dizzy, ususly from lying or sitting down to standing up, but

> in the last week or so I have felt more and more dizzy and very

> yucky, also my headaches are getting worse. Am I just more aware of

> it, or does this thing get worse ?

>

> I have two weeks to go until I have my first operation and to tell

> the truth I am very very scared !!!! I have never had an operation

of

> any kind before, apart from the ear infections I have always been

> pretty healthly, even with the ear infections I hardly ever missed

a

> day of school, I miss more days of school with sports activities

than

> being ill. I love going to school, you know, the social side, so I

> hate being away from my friends.

>

> Does it hurt for a long time after the operation, and how long will

I

> have to be away from school. They just tell me it depends on how

> quick I recover from the operation.. that doesn't give me an idea

> because I dont know anyone with this condition so I have no-one to

> ask.

>

> Also I am a bit worried about the dizziness and off balance side of

> things, I play league tennis pretty high up in the divisions and I

> would really like to get back up there as soon as I can. I mean I'm

> not going to Wimbledon type of thing, but I love my tennis.

>

> I would appreciate anything anyone can tell me about this,

especially

> about the operation.

>

> Thank you

Hi Sealice 2002,

What's your name? And where do you live? First things first here.

I had my first surgery on Valentine's day, the operation took 4

hours, and I was released the next day, and Pete's right, it's very

hard to sleep after the surgery, thank heavens for tylenol 3 and

gravol.

The big difference here is age, I'm 46, and your 15, so you'll

bounce back in no time flat, my c/toma had also eroded the bony plate

that seperates the brain and I was also getting headaches, I was on

IV antibiotics the entire time I was in hospital, and after my

release, have faith in your doctors, and keep your positive attitude,

it really helps, all c/toma is, is skin growing where it shouldn't

grow, and your surgeon will take it out.

You'll be sore and swollen, but I promise, you will heal, and feel

better, it's been almost one week for me, and I'm not back to work

yet, but I do almost everything I did before the operation. You'll be

alot more tired, so sleep, the body heals faster and better when you

sleep.

It's OK to be scared, I was, and I have five kids, it's just not

knowing what's going to happen, so ask as many questions as you can,

I thought I would have my head shaved, nope, not at all. If you have

a fear, voice it, bring it right out in the open.

Keep the group informed, we all care, and we'll give you as much

information as we are able.

Bye for now. Jan Godin. Kapuskasing, On.

February 20, 2002

At 08:20 AM 2/20/2002 +0000, you wrote:

>Sassy Suds <Diane@...> writes:

>

> > Nobody really knows what causes or aggravates this condition, but it's

> > believed that it's either congenital or caused by some sort of Eustachian

> > tube (between inner ear and throat, purpose is to equalize pressure in the

> > ear) dysfunction.

>

>That's strange. I was under the impression (based on reading various

>web sites about the condition, and from what my consultant has said)

>that the causes of c-toma where pretty much understood, except where

>congenital c-toma is concerned.

>

>Most websites on the subject list 2 forms of acquired c-toma - the

>first version is where the ear drum inverts, creating a pocket. The

>second is when the ear drum is damaged (sometimes just by the

>insertion of tubes).

>

>I'm interested in knowing why you say that the causes aren't really

>known.

Pete,

Nobody is really sure how or why the cells grow out of control, mutate from

tympanic membrane cells and start secreting a bone dissolving enzyme. I

was also told that a lot of people have Eustachian tube dysfunction, but

they don't grow C-toma. I read a lot of medical journal abstracts when I

was first diagnosed and have been to the world conference website. I read

a ton of conference abstracts as well. I didn't really clarify that

statement in my post. Yes, doctors know that some people are prone to

c-toma, the mechanisms of the growth are understood (pocket, retraction,

etc.) but nobody really knows why they grow.

I hope that makes sense!

Diane

February 20, 2002

Hi ,

I had a prostetic hearing bone put into my right ear and since I had no

nerve damage it has brought my hearing back in the normal range. I have no

complaints. I don't think my hearing would be this good without it.

Jane

>From: " A. Behr " <behr@...>

>Reply-cholesteatoma

><cholesteatoma >

>Subject: RE: Re: New to this

>Date: Tue, 19 Feb 2002 20:28:20 -0500

>

>Would those of you who have had artificial hearing bones put in please tell

>me about the outcome? My son's cholesteatoma had eroded 2 of the hearing

>bones and they had to remove the third one. He has no hearing in his that

>ear at all and I am hoping that they can restore at least some hearing. So

>far, all the people I have spoken to who have artificial hearing bones have

>not had good results or any hearing restored.

>

>Thank you so much!!

> Re: New to this

>

> Hi,

>

> Welcome to the group! You've come to the right place for

> information, support and understanding.

>

> I missed a week of work after my surgery. I think some people go

> back sooner than that and if you are dizy and off balance - it may

> take a little longer.

>

> Can you find out how many of these surgeries your ENT has done?

> It's very important to have a surgeon who does a whole lot.

>

> My ENT doesn't do very many and I asked him to refer me to someone

> else. He didn't mind at all and he sent me to a fantastic doctor.

>

> The right doctor can make a difference in your recovery and the

> success of your surgery. Of course there are no guarantees, but it

> is a good idea to do everything you can do. (that doesn't make a lot

> of sense, I hope you understand what I mean!!)

>

> Good Luck and please keep us posted,

>

> >

> > Hi

> >

> > I'm new to this whole ear /c-toma story.

> >

> > I am 15 and a half and last week my GP sent me to the ENt who sent

> me

> > to the Hospital ENT department, and after examinations ,tests,

> scans

> > etc they told me I had cholesteatoma ( I cant even pronounce it

> never

> > mind spell it.)

> >

> > My mum found me some information on the net and I understand the

> > basics of what it is, and how it got there.. I think, apparently

> from

> > what I can gather is that mine is both congenital and

> > aggravated/caused by serious infections. I dont think they really

> > know themselves !!!!

> >

> > To get it out they are going to operate, it has destroyed nearly

> all

> > of the bones in my ear, and has also destroyed the bone between my

> > ear and my brain. They say that I will be completely deaf in that

> ear

> > after the operation and also that I will be very dizzy and off

> > balance for a long time.

> >

> > Up until last week I felt pretty alright, I have had problems with

> a

> > headache almost every day in the afternoon, which is initially why

> I

> > went to the doctor, and obviously I have had bad ear infections on

> a

> > regular basis, they said it was swimmers ear. Only on odd

> occassions

> > I felt dizzy, ususly from lying or sitting down to standing up, but

> > in the last week or so I have felt more and more dizzy and very

> > yucky, also my headaches are getting worse. Am I just more aware of

> > it, or does this thing get worse ?

> >

> > I have two weeks to go until I have my first operation and to tell

> > the truth I am very very scared !!!! I have never had an operation

> of

> > any kind before, apart from the ear infections I have always been

> > pretty healthly, even with the ear infections I hardly ever missed

> a

> > day of school, I miss more days of school with sports activities

> than

> > being ill. I love going to school, you know, the social side, so I

> > hate being away from my friends.

> >

> > Does it hurt for a long time after the operation, and how long will

> I

> > have to be away from school. They just tell me it depends on how

> > quick I recover from the operation.. that doesn't give me an idea

> > because I dont know anyone with this condition so I have no-one to

> > ask.

> >

> > Also I am a bit worried about the dizziness and off balance side of

> > things, I play league tennis pretty high up in the divisions and I

> > would really like to get back up there as soon as I can. I mean I'm

> > not going to Wimbledon type of thing, but I love my tennis.

> >

> > I would appreciate anything anyone can tell me about this,

> especially

> > about the operation.

> >

> > Thank you

>

February 20, 2002

At 08:28 PM 2/19/2002 -0500, you wrote:

>Would those of you who have had artificial hearing bones put in please

>tell me about the outcome? My son's cholesteatoma had eroded 2 of the

>hearing bones and they had to remove the third one. He has no hearing in

>his that ear at all and I am hoping that they can restore at least some

>hearing. So far, all the people I have spoken to who have artificial

>hearing bones have not had good results or any hearing restored.

>

>Thank you so much!!

I have had great results with my prosthesis. Unfortunately, the first one

became entrapped with regrowth and had to come out. I could hear at nearly

normal levels with the first one and can also hear pretty well with the

second. I also am missing all three bones. Some of the factors for

restored hearing might be how involved the inner ear was by the c-toma

(nerve damage or cochlear involvement, etc.).

Sometimes the body rejects the prosthesis later. Even though my second one

is starting to come out, I won't hesitate to have it replaced if and when

it finally does come out. I'd do anything I could to restore any hearing

possible.

Diane

February 20, 2002

Sassy Suds <Diane@...> writes:

> Pete,

>

> Nobody is really sure how or why the cells grow out of control, mutate from

> tympanic membrane cells and start secreting a bone dissolving enzyme. I

> was also told that a lot of people have Eustachian tube dysfunction, but

> they don't grow C-toma. I read a lot of medical journal abstracts when I

> was first diagnosed and have been to the world conference website. I read

> a ton of conference abstracts as well. I didn't really clarify that

> statement in my post. Yes, doctors know that some people are prone to

> c-toma, the mechanisms of the growth are understood (pocket, retraction,

> etc.) but nobody really knows why they grow.

>

> I hope that makes sense!

Perfectly! :-) Thanks for the clarification. I'm glad you pointed out

the cell mutation, as I'd never considered that before! So they

understand what is likely to induce a c-toma, but not why. That's a

bit like saying 'If you stand at a bus stop a bus will come along',

without actually knowing why the bus turns up! They've only been

studying the condition for a couple of hundred years - I guess there's

no money to be made in discovering the whys and wherefores :-(

--

Pete

February 22, 2002

I had the hearing bone prosthesis placed 6 months after my first surgery

to remove the c-toma. In my case, the prosthesis did not help my hearing

and dislodged from where the surgeon placed it. He told me that because

sometimes they have to wedge the bones in, there is a greater chance of

it shifting. My prosthesis was removed last year when I had a radical

mastoidectomy.

Cheryl

" A. Behr " wrote:

> Would those of you who have had artificial hearing bones put in

> please tell me about the outcome? My son's cholesteatoma had eroded 2

> of the hearing bones and they had to remove the third one. He has no

> hearing in his that ear at all and I am hoping that they can restore

> at least some hearing. So far, all the people I have spoken to who

> have artificial hearing bones have not had good results or any hearing

> restored. Thank you so much!!

>

> Re: New to this

>

> Hi,

>

> Welcome to the group! You've come to the right place for

> information, support and understanding.

>

> I missed a week of work after my surgery. I think some

> people go

> back sooner than that and if you are dizy and off balance -

> it may

> take a little longer.

>

> Can you find out how many of these surgeries your ENT has

> done?

> It's very important to have a surgeon who does a whole lot.

>

> My ENT doesn't do very many and I asked him to refer me to

> someone

> else. He didn't mind at all and he sent me to a fantastic

> doctor.

>

> The right doctor can make a difference in your recovery and

> the

> success of your surgery. Of course there are no guarantees,

> but it

> is a good idea to do everything you can do. (that doesn't

> make a lot

> of sense, I hope you understand what I mean!!)

>

> Good Luck and please keep us posted,

>

> >

> > Hi

> >

> > I'm new to this whole ear /c-toma story.

> >

> > I am 15 and a half and last week my GP sent me to the ENt

> who sent

> me

> > to the Hospital ENT department, and after examinations

> ,tests,

> scans

> > etc they told me I had cholesteatoma ( I cant even

> pronounce it

> never

> > mind spell it.)

> >

> > My mum found me some information on the net and I

> understand the

> > basics of what it is, and how it got there.. I think,

> apparently

> from

> > what I can gather is that mine is both congenital and

> > aggravated/caused by serious infections. I dont think they

> really

> > know themselves !!!!

> >

> > To get it out they are going to operate, it has destroyed

> nearly

> all

> > of the bones in my ear, and has also destroyed the bone

> between my

> > ear and my brain. They say that I will be completely deaf

> in that

> ear

> > after the operation and also that I will be very dizzy and

> off

> > balance for a long time.

> >

> > Up until last week I felt pretty alright, I have had

> problems with

> a

> > headache almost every day in the afternoon, which is

> initially why

> I

> > went to the doctor, and obviously I have had bad ear

> infections on

> a

> > regular basis, they said it was swimmers ear. Only on odd

> occassions

> > I felt dizzy, ususly from lying or sitting down to

> standing up, but

> > in the last week or so I have felt more and more dizzy and

> very

> > yucky, also my headaches are getting worse. Am I just more

> aware of

> > it, or does this thing get worse ?

> >

> > I have two weeks to go until I have my first operation and

> to tell

> > the truth I am very very scared !!!! I have never had an

> operation

> of

> > any kind before, apart from the ear infections I have

> always been

> > pretty healthly, even with the ear infections I hardly

> ever missed

> a

> > day of school, I miss more days of school with sports

> activities

> than

> > being ill. I love going to school, you know, the social

> side, so I

> > hate being away from my friends.

> >

> > Does it hurt for a long time after the operation, and how

> long will

> I

> > have to be away from school. They just tell me it depends

> on how

> > quick I recover from the operation.. that doesn't give me

> an idea

> > because I dont know anyone with this condition so I have

> no-one to

> > ask.

> >

> > Also I am a bit worried about the dizziness and off

> balance side of

> > things, I play league tennis pretty high up in the

> divisions and I

> > would really like to get back up there as soon as I can. I

> mean I'm

> > not going to Wimbledon type of thing, but I love my

> tennis.

> >

> > I would appreciate anything anyone can tell me about this,

>

> especially

> > about the operation.

> >

> > Thank you

>

February 23, 2002

hi,

i know exactly how you feel. i am 34 and was diagnosed 2 years ago. i have had 2 surgeries and was told 3 weeks ago i need another.

my cholesteatoma killed my bones but not my mastoid. i was lucky ( kinda).

the surgery itself is not so bad. the post-op drives you crazy. the packing they put in your ear causes pressure and it feels like you can hear your blood flow in your head. it was hard to sleep because you never have any peace in your head. there are all kinds of noises going on in there. it is really a strange feeling. it hurts a little but if you have had pain with your cholesteatoma you should be used to it.

from what i have read when the mastoid is involved things are different. like you said the dizziness and all i didn't experience that part.

good luck and write me anytime.

missie

February 23, 2002

At 08:28 PM 2/19/2002 -0500, you wrote:

>Would those of you who have had artificial hearing bones put in please >tell me about the outcome? My son's cholesteatoma had eroded 2 of the >hearing bones and they had to remove the third one. He has no hearing in >his that ear at all and I am hoping that they can restore at least some >hearing. So far, all the people I have spoken to who have artificial >hearing bones have not had good results or any hearing restored.

>

>Thank you so much!!

Hi and welcome to the group!

I'm , my daughter Alyssa (9) has had 3 surgeries on her left ear for recurrent c-toma, the latest being in August when they also did canal wall down surgery. She only has the footplate of the stapes left which they attached the prosthetic TORP to (I cant remember what that stands for). Anyway, she just had a hearing test done earlier this month and has no hearing at all in that ear. Her doctor seems to think this is permanent with no chance of reconstruction. I'm still not sure why. She did have a CAT Scan done before her first surgery in 1999, and it showed only a small amount of c-toma, with no involvement of the hearing bones, but when the doc got in there, he saw that it was much more extensive than the CT san showed, it had completely eroded all the hearing bones (with the exception of the footplate of the stapes). He said that you can never tell by the CT Scan how extensive it is.

For all the new members who had questions about recovery time after surgeryv, Alyssa has had 3 surgeries now and with each one, the recovery was pretty much the same. From the time she first woke from the anesthesia after surgery until the next day, she was extremely dizzy, nausious and throwing up. She never bled out of her ear, just a little behind it where the incision was. She was back to her old self within a couple of days and back to school within a week. She never had any pain after any of her surgeries, but has had the shooting pain in her ear a couple of times, then it goes away almost immediately. I have noticed a lot of clumsiness and irritability (understatement!) lately, but maybe that's just a 9 year old thing, or possibly a combination of the two.

I know this has been stressed in the past, but for all of the new members, it is so important to keep water out of the ears! Water actually helps these things grow. Something about the enzymes reacting. Diane...you can take over and explain it from here. You're good with all the technical stuff

Please let us know how everything goes and take care.

February 26, 2002

Hello niloco2000@...,

In reference to your comment:

è I wonder if this disease progresses this fast?

I was diagnosed with Achalasia 10 months after I

noticed first symptoms. By the time I was diagnosed, I had

chest spasms, could keep almost nothing down including water,

lost 30 pounds, had terrible coughing spells and could not

sleep without using 6 pillows. I did manage to stop the weight

loss, I guess because I ate non stop and found that chocolate

went down real well:). So, yes in my case it progressed pretty

fast.

Good luck

Magg

February 26, 2002

hi

i am just reading your e-mail and felt you need a

postive reponse.

our son of 24years has had achalasia for the past six

years being diagnosed at the age of 18. he has coped

the this problem over the years by changing his

lifestyle and eating habits. this christmas it got

worse and he was unable to swallow and has been

hospitalized since the 7th January 2002. we have

become quite the experts on this disease and when the

hospital start his treatment we felt they were just

quick fix remedies such as a further two dilation (6

in all) which had no effect then more musle relaxants

giving side effects of low blood pressure and severe

headaches. the medical profession in the uk seemed to

adopt this attitude of the quick fix, and it was only

after strong representation that our son had major

surgery on the 18th February 2002, to day the 26th

February 2002 he had his first bowl of soup with no

reflux. the first time in six years, he found the

moment quite emotional. even though it is early days

it was so nice to see our son so relieved.

our advice to you is to read everything you can on

achalasia so you join in the debates as to what

treatments you receive.

we wish you well, and urge you to keep positive.

regards

chris brown

--- niloco2000 <niloco2000@...> wrote:

<HR>

<tt>

Hi all,

I quietly been reading some of your messages and I

think it is so

comforting to know that there are others with the same

condition, and

that are alive.

I am 34 and was just diagnosed with

& quot;Achalasia & quot; well this happened

when I was on vacation in Ecuador. & nbsp; Now that I am

back to the USA I

need to get this confirmed, I am sure I need to get

some tests done,

perhaps the same endoscopy, manometry and xrays.

I had pains for over a year and became more

frequent. & nbsp; Last year I

had tests done and did not find anything

strange. & nbsp; I wonder if this

disease progresses this fast?

I have tons of questions for you as a new member of

the list:

1) anyone in New Jersey (East Cost)

2) anyone who can recommend best hospital/doctor

3) is this something that needs immediate

attention

4) besides difficulty in eating what are some major

risks associated

with dilation or surgery

5) given my age 34, and a young family is this

something that you can

overcome and have a & quot;normal & quot; live

These are some of my first questions. I thank you in

advance for any

comments and feedback. & nbsp; I want to get treated

soon and to get well

soon to enjoy my kids.

</tt>

<td align=center><font size= " -1 "

color=#003399>

February 26, 2002

hi

i am just reading your e-mail and felt you need a

postive reponse.

our son of 24years has had achalasia for the past six

years being diagnosed at the age of 18. he has coped

the this problem over the years by changing his

lifestyle and eating habits. this christmas it got

worse and he was unable to swallow and has been

hospitalized since the 7th January 2002. we have

become quite the experts on this disease and when the

hospital start his treatment we felt they were just

quick fix remedies such as a further two dilation (6

in all) which had no effect then more musle relaxants

giving side effects of low blood pressure and severe

headaches. the medical profession in the uk seemed to

adopt this attitude of the quick fix, and it was only

after strong representation that our son had major

surgery on the 18th February 2002, to day the 26th

February 2002 he had his first bowl of soup with no

reflux. the first time in six years, he found the

moment quite emotional. even though it is early days

it was so nice to see our son so relieved.

our advice to you is to read everything you can on

achalasia so you join in the debates as to what

treatments you receive.

we wish you well, and urge you to keep positive.

regards

chris brown

--- niloco2000 <niloco2000@...> wrote:

<HR>

<tt>

Hi all,

I quietly been reading some of your messages and I

think it is so

comforting to know that there are others with the same

condition, and

that are alive.

I am 34 and was just diagnosed with

& quot;Achalasia & quot; well this happened

when I was on vacation in Ecuador. & nbsp; Now that I am

back to the USA I

need to get this confirmed, I am sure I need to get

some tests done,

perhaps the same endoscopy, manometry and xrays.

I had pains for over a year and became more

frequent. & nbsp; Last year I

had tests done and did not find anything

strange. & nbsp; I wonder if this

disease progresses this fast?

I have tons of questions for you as a new member of

the list:

1) anyone in New Jersey (East Cost)

2) anyone who can recommend best hospital/doctor

3) is this something that needs immediate

attention

4) besides difficulty in eating what are some major

risks associated

with dilation or surgery

5) given my age 34, and a young family is this

something that you can

overcome and have a & quot;normal & quot; live

These are some of my first questions. I thank you in

advance for any

comments and feedback. & nbsp; I want to get treated

soon and to get well

soon to enjoy my kids.

</tt>

<td align=center><font size= " -1 "

color=#003399>

February 27, 2002

Hi, ,

I am a "quiet" member as well but wanted to respond to your questions to see if I could help. I am only 32 with two young kids and have been battling trying to manage achalasia now for about 3 years. Here is what I know from experience: Dr.'s want a quick fix.....ie. dilitations, etc. I had a dilitation done as the first procedure. It didn't help much and was very painful. I then proceeded to have two botox injections in the past year and a half. These,too, were temporary fixes. While they lasted, it was great...I loved eating like a "normal" person. But after much late night researching and the discussions from this group, I am opting for the surgery now. The heller myotomy can be done laproscopically now and has a high success rate. I wish it was the first thing I had done!!!! It has a higher success rate if you have not had previous procedures ( ie. dilitations, botox, etc.) and at our young ages, a one time fix sure makes a lot of sense! I wish I had this advice given to me three years ago.

I am not sure those of us living with achalasia can ever really have a "normal" life. I have come to realize just how much our society socializes with food. It is uncomfortable for us and not very enjoyable for our families. However, I do think it is manageable. I have experienced this with the previous procedures. As I await surgery now, STARVING because the last botox wore off, I realize how nice it has been to feel well again. I am anxious for this feeling again.

I wish you success in your treatments, whatever you decide. Use this board to help you with decisions. They are the ones who helped me to realize I was not alone and that surgery made sense. Keep us posted and let us know if we can help in any other way.

PS> Don't get too bummed out watching your kids eat at Mcs....I learned just to play with the toys while I drink a shake! HA HA

New to this

Hi all,I quietly been reading some of your messages and I think it is so comforting to know that there are others with the same condition, and that are alive.I am 34 and was just diagnosed with "Achalasia" well this happened when I was on vacation in Ecuador. Now that I am back to the USA I need to get this confirmed, I am sure I need to get some tests done, perhaps the same endoscopy, manometry and xrays.I had pains for over a year and became more frequent. Last year I had tests done and did not find anything strange. I wonder if this disease progresses this fast?I have tons of questions for you as a new member of the list:1) anyone in New Jersey (East Cost)2) anyone who can recommend best hospital/doctor3) is this something that needs immediate attention4) besides difficulty in eating what are some major risks associated with dilation or surgery5) given my age 34, and a young family is this something that you can overcome and have a "normal" liveThese are some of my first questions. I thank you in advance for any comments and feedback. I want to get treated soon and to get well soon to enjoy my kids.

February 28, 2002

Thank you very much for taking the time to write. I really

appreciate the comments and encouragement from others on the list,

this is great.

I will read your message very carefully again because I went to the

doctor today and he suggests the injections as the first solution.

He was not inclined at all for dilations or surgery. I think I will

have to run this by another doctor and compare notes.

Since this is something we all have to live with, I believe is very

important to do more research and look for the best of best. I am

sure that each case is different and potentially depending on how

early the detection is it may require different treatments but

belive, I am not taking any chances.

I am fortunate to have an excellent insurance so I can really shop

for multiple opinions by going to different doctors and only have to

pay the $15 copay.

I hope all your procedures and recovery goes well. Everyone

recommend eating chocolate and I will have a shake or two thinking of

your message.

Please keep in touch, I am sure that your feedback will continue to

be so valuable I would not want to miss it.

Thanks,

> Hi, ,

> I am a " quiet " member as well but wanted to respond to your

questions to see if I could help. I am only 32 with two young kids

and have been battling trying to manage achalasia now for about 3

years. Here is what I know from experience: Dr.'s want a quick

fix.....ie. dilitations, etc. I had a dilitation done as the first

procedure. It didn't help much and was very painful. I then

proceeded to have two botox injections in the past year and a half.

These,too, were temporary fixes. While they lasted, it was great...I

loved eating like a " normal " person. But after much late night

researching and the discussions from this group, I am opting for the

surgery now. The heller myotomy can be done laproscopically now and

has a high success rate. I wish it was the first thing I had

done!!!! It has a higher success rate if you have not had previous

procedures ( ie. dilitations, botox, etc.) and at our young ages, a

one time fix sure makes a lot of sense! I wish I had this advice

given to me three years ago.

> I am not sure those of us living with achalasia can ever really

have a " normal " life. I have come to realize just how much our

society socializes with food. It is uncomfortable for us and not

very enjoyable for our families. However, I do think it is

manageable. I have experienced this with the previous procedures.

As I await surgery now, STARVING because the last botox wore off, I

realize how nice it has been to feel well again. I am anxious for

this feeling again.

> I wish you success in your treatments, whatever you decide. Use

this board to help you with decisions. They are the ones who helped

me to realize I was not alone and that surgery made sense. Keep us

posted and let us know if we can help in any other way.

> PS> Don't get too bummed out watching your kids eat at

Mcs....I learned just to play with the toys while I drink a

shake! HA HA

>

> New to this

>

> Hi all,

>

> I quietly been reading some of your messages and I think it is so

> comforting to know that there are others with the same condition,

and

> that are alive.

>

> I am 34 and was just diagnosed with " Achalasia " well this

happened

> when I was on vacation in Ecuador. Now that I am back to the USA

I

> need to get this confirmed, I am sure I need to get some tests

done,

> perhaps the same endoscopy, manometry and xrays.

>

> I had pains for over a year and became more frequent. Last year

I

> had tests done and did not find anything strange. I wonder if

this

> disease progresses this fast?

>

> I have tons of questions for you as a new member of the list:

>

> 1) anyone in New Jersey (East Cost)

> 2) anyone who can recommend best hospital/doctor

> 3) is this something that needs immediate attention

> 4) besides difficulty in eating what are some major risks

associated

> with dilation or surgery

> 5) given my age 34, and a young family is this something that you

can

> overcome and have a " normal " live

>

> These are some of my first questions. I thank you in advance for

any

> comments and feedback. I want to get treated soon and to get

well

> soon to enjoy my kids.

>

February 28, 2002

Hi - I'm in NJ (Springfield/Exit 138) My gastro specialist is DR. Levinson in Springfield. I had a laporascopic Heller myotomy with Dr. Ballantyne at Hackensack Hospital in Feb. 2000.

Where are you located?

New to this

Hi all,I quietly been reading some of your messages and I think it is so comforting to know that there are others with the same condition, and that are alive.I am 34 and was just diagnosed with "Achalasia" well this happened when I was on vacation in Ecuador. Now that I am back to the USA I need to get this confirmed, I am sure I need to get some tests done, perhaps the same endoscopy, manometry and xrays.I had pains for over a year and became more frequent. Last year I had tests done and did not find anything strange. I wonder if this disease progresses this fast?I have tons of questions for you as a new member of the list:1) anyone in New Jersey (East Cost)2) anyone who can recommend best hospital/doctor3) is this something that needs immediate attention4) besides difficulty in eating what are some major risks associated with dilation or surgery5) given my age 34, and a young family is this something that you can overcome and have a "normal" liveThese are some of my first questions. I thank you in advance for any comments and feedback. I want to get treated soon and to get well soon to enjoy my kids.

July 1, 2002

Hi , Welcome and good luck for a good start, sounds like you

have your hands full at home. I am just starting my second week and

the difference in how you feel more than makes up for the extra

planning to get the meals and the exercise time in. I am not counting

calories just sticking to the portion size palm /fist serving size

and I am gaining muscle and losing weight. 2lbs is where you start if

thats what you can handle, bet there are some decent muscles under

there from picking up the kids and hauling in the groceries. Good

luck again, Yeta

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