Thanks

January 12, 2003

Its nice to someone who knows much more then me..I do know I have

geno-type 1a. And I would love some help to find a good doctor I live

in Texas around the Austin area.Its nice to know someone knows how

you feel.And after hearing from everyone I do think I will go ahead

with the biospy as soon as I find a good Doctor. Thanks for all the

help and God Bless

Jana

March 3, 2003

Yes, Pam. It is suggested that when you dip a piece of paper in and then

remove it and light it. It will be ready when the paper burns without

sizzling or popping.

Then you pour out the Ghee. Some people strain it threw a fine cheese cloth

to keep all the milk solids out.

Thanks

> Thanks for your responses and links to my questions. Now to find that

reference again on how to make your own Ghee! Was it just cooking butter

down and getting the water out?

>

July 6, 2003

You are definitely kept in thoughts and prayers. My liver levels were all over

the map 10 years ago, for over a year, and the doctor I was seeing accused me of

being a closet alcoholic (excuse me?). So much has been learned since then.

Ok, listers, correct me if I am wrong, but elevated levels mean the virus is

active, not that it is causing damage.

Please just know that you don't have to make immediate decisions. Stop, take a

deep breath, and take your time to know what is right for you. LeighAnn said it

best, learn what your genotype is first - it really does make a whole lot of

difference.

Marilyn

Thanks

thanks for your support already. I am taking it one day at a time. I

feel very confident with my Dr and I think that together we will

make the right decisions as far as treatment goes. He doesn't seem

to want to rush into anything he is running all sorts of test first.

I do however know that my liver enzyme levels have been elevated for

at least 8 months thanks to a blood test for life insurance. So I

feel that I will probably do treatment to stop the effects on my

liver, but this is all new to me so I'm not sure about all of my

options just yet. Just please keep me in your thoughts and prayers

as I begin this journey. God bless us all!!

July 7, 2003

Your liver enzymes are not an indication of liver damage so do not

use them to make a treatment decision! Always wait until you get the

liver biopsy done and see what it says. If you have no liver damage,

you have time to wait for better treatments to come along. Making

good life-style changes, no drinking-eating healthy-no drugs, will

help you keep your liver in good health!

LeighAnn

July 26, 2003

Dearest Apocalypticdrone,

Whether you realizie it or not, YOU DID contribute very much to this

group! How?? by being a part of its membership you increased its

numbers!! And that makes a big difference! When a new potential

member checks out this site what do you think they would think when

they might see 20 members vs 360 members??? They, like you, need

resources and to be wit others in the " same situation " , so SIZE DOES

MATTER!!!! And you and others who lurked helped to increase the size

so that I and others who help field the questions would know that we

are helping many not just a few. The truth is this site and my

earlier study group on Delphi, once started with a few, and it would

be here whether there is one to help or 1000!. But the goal was to

help many. And your presence helps us to feel that we ARE! So thank

you for lurking !

Secondly your lurking assures others that it is okay to lurk! Notice

only a handful ask questions yet membership is 360 + , you helped

others to know it is okay and that one way of using this site!

Thirdly you have helped others by coming forward and sharing your

experiences as a lurker. What good does someone get just by reading

and watching on their own without asking questions of their own? You

DID it you let others that will come after you that this study group

even helps those who watch,read and study silently.

And lastly you have helped ME and others of this site who answer

questions to feel proud, and helpful that we have " reached " you

lurkers! I especially needed to hear this, because I often wonder if

my Tutorials are explicit enough!

With much appreciation for your comments and your " lurking " , for

being there...er ...HERE!

Respectfully,

Jeanetta Mastron CPhT BSChem

Rx Tech Educator

F/O

> I know i didn't participate in this group at all or anything, but

lurking

> behind the scenes and just taking all the review in was very

helpful..thank you

> to the moderators and all those who participated..the math reviews

and stuff

> were überhelpful and i think i got every single math problem

correct..i just

> hope i got enough of the other stuff to pass..thanks a lot!

>

August 4, 2003

Hi Missy,

It is so nice to hear that all is going well for you. :-) I'm so

happy that your CI processor is already providing you with better

understanding of speech/sounds than your hearing aid. How

exciting! :-)

Don't forget that your local library can be a good place to find

books on tape. If you need to follow the tape in a book--be sure to

get the " unabridged " tapes. I am currently enjoying Jill Ker Conways

book " The Road to Coorain " on tape. And I am following along in her

book as well. The first several weeks after hook-up, I was checking

out children's books on tape. I just " graduated " to adult books last

week...but I still check out the book along with the tapes as not

all the narrators are easy for me to understand.

BunEWabbit

> I wanted to thank Bbunewabbit, Anne, Snoopy, Felcity & Alice for

your

> replies and helpful suggestions for the sore ear. Things are

moving

> along wonderfully.

> I'm going out this week for some books on tape. The sound from

the

> CI is so different from HA's. I never dreamed it would be this

great.

>

> - How's things going? I hope your moving foward. Keep in

> touch.

>

> Thanks,

> Missy

October 29, 2003

His heart has been racing off and on, and he's been weak, tired, and dizzy at times as well. He's experienced some loss of feeling in the left side of his tongue, his left-hand fingertips, and even his left eye going a little blurry lately. The doctor said most of these symptoms are normal... has anyone else experienced them? I've read of a few of you who talk about the dizziness, but only AFTER surgery... the scariest part is that after his CT scan last week they aren't sure if that's all he has; there could be something else, but they won't know what until they are operating.

Hi Kaatia

I think there are quite of lot of us who have had dizziness before the surgery. It either means that the ctoma is putting pressure on the surrounding structures in the ear and in turn affecting the balance system or there is some erosion through to inner ear which would probably mean that any moving around would bring on vertigo (a very violent spinning sensation) and nystagmas - ongoing dizziness especially, will lead to exhaustion. The more advanced symptoms of ctoma are usually the result of it having been there a long time before diagnosis. The other kind of symptoms are more to do with pressure on or erosion through to the facial nerve. That means you generally have an altered sense of taste, facial weakness or paralysis, tics or problems with your eye and mouth. It's also possible to develop a stiff neck and shoulder and an aching jaw. Once it gets going, ctoma is a pretty uncomfortable condition, it can also cause severe headaches, sharp pains in the ear and dull ache in the mastoid area. This is only to let you know the kind of symptoms that can develop, not that they necessarily will - and do remember that the surgery will resolve the worst effects of ctoma.

I'm afraid that it is always the case that the doctors won't know the extent and and damage done by the ctoma until they operate. The CT scans aren't definitive. The other question is about recovery and that does depend on a lot of things - age, how ill you become before the surgery and what if any symptoms persist for a while after the surgery etc. The average time off work does seem to be about two weeks and that's what I've just taken after my recent surgery. Two years ago, however, I had a far worse time with ctoma and the doctor signed me off work for three months - I went back after one month, but that was too soon. Each person is different and the best policy is just to take whatever time you need to recover. Just remember that ctoma is a disease that we've all got through - it can sometimes be difficult but it is curable.

Best wishes

Phil

October 29, 2003

Hi there Kaaita my name is Evie and 18 months ago I was diagnosed

with a Ctoma in my left ear as well. Just recently I was feeling

really dizzy and nauscious so I went to my Ent and he told me that

it has grown back again. I'm booked in for surgery on the 12th. But

I know what your husband is going through with the pain, the

dizziness and the blurred vision. The only wisdom that I can provide

is that once the surgery is over and the packing is taken out it

starts to wear off, but it's the waiting time to get into surgery

that's the most painful. My hopes and prayers are with your Husband

and yourself.

From Evie

> My husband signed me up for this group about a week ago, even

though

> he's the one with cholesteatoma. It's nice learning so much more

> about it, though; I haven't been in on all the doctor's visits,

> tests, etc. with him so I was relatively clueless about this until

> reading some of your posts and experiences. I am learning quite a

> bit in a short amount of time! My husband was diagnosed only a

> couple of weeks ago, after having problems with his left ear for

as

> long as he can remember, and finally a doctor took him seriously

and

> referred him to an ear/nose/throat specialist. Right now we are

just

> waiting to find out how soon he can get in for surgery; he is in a

> lot of pain and has had to start taking pain medication sometimes

at

> night because his ear/head hurt so much. His heart has been

racing

> off and on, and he's been weak, tired, and dizzy at times as

well.

> He's experienced some loss of feeling in the left side of his

tongue,

> his left-hand fingertips, and even his left eye going a little

blurry

> lately. The doctor said most of these symptoms are normal... has

> anyone else experienced them? I've read of a few of you who talk

> about the dizziness, but only AFTER surgery... the scariest part

is

> that after his CT scan last week they aren't sure if that's all he

> has; there could be something else, but they won't know what until

> they are operating. It will be hard to leave him in the hands of

the

> doctors not knowing exactly what will happen and what the outcome

> will be... but it's really helping to get an idea of some of your

> experiences with surgery and post-operation side affects, etc. My

> husband thinks he's superman and will probably want to get right

back

> to work and school and everything else within a couple of days...

> someone just mentioned being off work for about two weeks after

> surgery... is that about normal recovery time? Anyway, I

appreciate

> all of you sharing your experiences and knowledge with everyone

else;

> it helps us not feel so alone. We had never heard of the disease

> before a couple of weeks ago, so this is all very new to us.

Thanks,

> and good luck, everyone.

>

> -Kaatia, married to

November 6, 2003

In a message dated 11/6/2003 7:23:45 PM Eastern Standard Time,

deaval@... writes:

> My fiance

> had to laugh when he came home and found four grocery bags full of

> pasta, cereal, cake mix and other dietary " culprits " sitting in the

> kitchen waiting to be donated.

>

Isn't it amazing the stuff you have to remove from your kitchen when you go

on the diet. I gave mine away to people who thought I'd lost my mind.

Max

November 7, 2003

It is amazing what all you get out of the house. I kept the things A's could

eat for my sweet hubby. Needless to say they're kept out of sight even now

so I don't feel the temptation. People still think it is sort of strange at

Senior Citizens at noon when I step up to the servers and ask them not to

put the foods on my tray that are O avoids. I just take O foods for the ones

I shouldn't eat. They shake their heads, but they are very happy for me that

eating this way keeps the arthritis at bay.

Re: Thanks

> In a message dated 11/6/2003 7:23:45 PM Eastern Standard Time,

> deaval@... writes:

>

> > My fiance

> > had to laugh when he came home and found four grocery bags full of

> > pasta, cereal, cake mix and other dietary " culprits " sitting in the

> > kitchen waiting to be donated.

> >

>

> Isn't it amazing the stuff you have to remove from your kitchen when you

go

> on the diet. I gave mine away to people who thought I'd lost my mind.

> Max

November 7, 2003

Even though my fiance is an O too, he's not ready to go " cold turkey "

so he put all the " grainy goods " back in the pantry.

My mother, also an O, has been on the diet for two years and says

that after the first year she relaxed a bit on restrictions,

indulging in wheat or dairy occassionally, without ill effect.

I've got lamb stew in the slow cooker today. I'll try a small

portion when I get tonight and see how it goes.

Everybody I tell about the BTD wants to know more. My girlfriend

wants to borrow the book but I'm not ready to part with it

Anyway, hope everyone is doing well.

Thanks for listening,

Eva

> It is amazing what all you get out of the house. I kept the things

A's could

> eat for my sweet hubby. Needless to say they're kept out of sight

even now

> so I don't feel the temptation. People still think it is sort of

strange at

> Senior Citizens at noon when I step up to the servers and ask them

not to

> put the foods on my tray that are O avoids. I just take O foods for

the ones

> I shouldn't eat. They shake their heads, but they are very happy

for me that

> eating this way keeps the arthritis at bay.

>

> Re: Thanks

>

> > In a message dated 11/6/2003 7:23:45 PM Eastern Standard Time,

> > deaval@y... writes:

> >

> > > My fiance

> > > had to laugh when he came home and found four grocery bags full

of

> > > pasta, cereal, cake mix and other dietary " culprits " sitting in

the

> > > kitchen waiting to be donated.

> > >

> >

> > Isn't it amazing the stuff you have to remove from your kitchen

when you

> go

> > on the diet. I gave mine away to people who thought I'd lost my

mind.

> > Max

November 7, 2003

Eva,

You might suggest she check the library. Even as small as the towns are

around here, the library has Eat Right and Cook Right. I heard they are

getting in Live Right.

If you find you have a problem with the avoids back in the pantry, is there

someplace else you could store them for your fiancee? Also, when fixing a

stew, I often put sweet potatoes in instead of white potatoes. That lamb

sounds wonderful. I'll have to wait until Christmas to be able to find lamb

in the grocery store here.

Re: Thanks

> Even though my fiance is an O too, he's not ready to go " cold turkey "

> so he put all the " grainy goods " back in the pantry.

> My mother, also an O, has been on the diet for two years and says

> that after the first year she relaxed a bit on restrictions,

> indulging in wheat or dairy occassionally, without ill effect.

> I've got lamb stew in the slow cooker today. I'll try a small

> portion when I get tonight and see how it goes.

>

> Everybody I tell about the BTD wants to know more. My girlfriend

> wants to borrow the book but I'm not ready to part with it

>

> Anyway, hope everyone is doing well.

> Thanks for listening,

> Eva

November 16, 2003

Dear Wilneida,

I am glad you posted when you did, and more importantly that you

observed the site and learned from others who were posting and the

responses that I/we gave.

It is a very nice compliment that this site was your biggest help.

Also to know that the information contained in my file section has

also helped you brings me to a smile and a warm heart. Thank you so

much for your displayed appreciation. Others who help out on the

site also need to hear this and I am so touched that you and others

have displayed such appreciation.

I am glad to hear many people took the exam, but I do hope that the

room was not overly crowded. So were the accomodations okay?

Please continue to stay a member at least until you get your results

and share with us online post and in our POll.

Thank you for posting your experience.

Respectfully,

Jeanetta Mastron CPhT BS Chem

Founder/Owner

> Hi, I just wanted to say thanks. Even though I only posted

questions twice, I was always here reading everyone elses questions

and using all the information on your files. Your website was my

biggest help.

> About the test here in nashville ,TN, it was very crowded , alot

of people, more than other times I heard a few say. The test was

hard but I'm feeling good about it. Now just anxious to get those

results. Once again thank you jeanetta and everyone else.

>

November 16, 2003

Dear Wilneida,

I need you to post the exact location. PTCB will once again be

reviewing the posts that mention complaints on hotel, or test sites,

start times, temperature, personnell and proctors, calculator checks

etc.

If you want to do this in private please email me and I will get the

info to them. Otherwise they will just read the posts. After the

last July 2003 test, there were MANT complaints. PTCB was only too

happy to hear from us at this site, so that they could rectify and

address them. They said that it is rare that people will let them

know such things after the exam, because most are just too happy

that it is over. But my site has people who care and continue to

post afterward and the postings really helped them to 'be on top' of

the problem.

From what I can tell so far only one main complaint of getting

stared late. But then again all is still too new for postings.

Please post the name and location of the testing site .

Most respectfully,

Jeanetta Mastron CPhT

Founder/Owner of this site

> Actually I think they could've done better. The place was nice but

we were sitting down so close to each other that every time I used

my calculator I'd elbowed the girl nest to me, so that was a little

uncomfortable. I felt like I couldn't move.

November 29, 2003

Jan --

Katelyn currently has a large perforation in her eardrum that will

not heal on its own. I believe that I was told that most

perforations heal on their own within 4 months if it is going to

heal. Her surgeon is sending her to another otologist to get a

second opinion on whether to attempt to patch it or not. She does

not complain about any pain. The way that things have been explained

to me is that the hole actually allows drainage to occur so if there

is an infection, there should be less or no pain involved since the

gunk is draining out of the ear.

Hope this helps.

Candy

> Thanks Guys, for the advice on swim caps - will perserve and try

> and get him to tolerate them - guess if it is the choice between

> swimming or not he will put them in.

>

> I do have another question though - Kazz mentioned that she

> was 'suffering' from a perforation to her ear drum - Trent has a

> perforation to both ear drums - GP advised they would not heal -

> firstly I would like to know what pain/discomfort would be

> associated with a perforation and from experience would anyone

> disagree with our GP - personally I thought they would heal similar

> to grommets. As Trent is a non-verbal person and will not tell me

> if he is in pain at all - any insight to how he may be feeling

would

> be greatly appreciated.

>

> Thanks

>

> Jan - mother of Trent 19yo with Downs Syndrome

November 29, 2003

Hi Jan

I had (still have!) a very painful ear infection of the middle ear, which

led to the (also very painful) perforation of the eardrum and which is

currently proving resistant to the antibiotics I have been taking. :-(

Some people, however, have a permanent perforation of the eardrum; in such

cases the eardrum seems to have just 'worn through' and not necessarily

burst as the result of any trauma. In these cases, this hole is tiny and

will cause no pain and the patient usually won't notice it's there. However

because of that tiny hole, due care must be taken, because submersion in

water would allow the liquid easy access to the middle ear and *that* would

probably prove painful, and is also a good means by which infections are

caused.

I also had grommets (I was 29 when I had these) and they didn't hurt at all,

either the surgery, or any stage afterwards.

As regards water, I haven't been swimming since 1999 when my cholesteatoma

was both diagnosed and removed - for fear of making the situation worse. I

refuse to wear earplugs in my ears because I feel this might encourage

infection (such as my hearing aid currently seems to, which is the reason

I'm getting a BAHA) and would probably build up pressure within the middle

ear whilst sealing the ear from external influences. Before I wash my hair,

I put cotton wool and vaseline in my ears; if I weren't to go to this

'trouble', I am almost guaranteed an infection - something I would rather

avoid.

Hope this helps. :-)

Kazz

xx

Thanks

Thanks Guys, for the advice on swim caps - will perserve and try

and get him to tolerate them - guess if it is the choice between

swimming or not he will put them in.

I do have another question though - Kazz mentioned that she

was 'suffering' from a perforation to her ear drum - Trent has a

perforation to both ear drums - GP advised they would not heal -

firstly I would like to know what pain/discomfort would be

associated with a perforation and from experience would anyone

disagree with our GP - personally I thought they would heal similar

to grommets. As Trent is a non-verbal person and will not tell me

if he is in pain at all - any insight to how he may be feeling would

be greatly appreciated.

Thanks

Jan - mother of Trent 19yo with Downs Syndrome

November 29, 2003

Make sure the bandages are the "waterproof" kind. Nexcare makes two types just alike. One is "waterproof" and one is not. Sometimes we make a mistake and grab the wrong one and just have to take them back.

Audrey

November 29, 2003

Jan,

My 8 year old son never indicated there was any pain from the hole in his ear drum. Also, our otologist said it would have healed, but there was a wad of wax surrounding a dislodged tube on one side and a cholesteatoma on the other side that prevented that from happening. Then after his surgery the hole was way too big and it would not heal, so a patch (other skin) was used. Surgery was done in August and it seems to be working well.

Steve, dad of

Thanks

Thanks Guys, for the advice on swim caps - will perserve and try and get him to tolerate them - guess if it is the choice between swimming or not he will put them in. I do have another question though - Kazz mentioned that she was 'suffering' from a perforation to her ear drum - Trent has a perforation to both ear drums - GP advised they would not heal - firstly I would like to know what pain/discomfort would be associated with a perforation and from experience would anyone disagree with our GP - personally I thought they would heal similar to grommets. As Trent is a non-verbal person and will not tell me if he is in pain at all - any insight to how he may be feeling would be greatly appreciated. ThanksJan - mother of Trent 19yo with Downs Syndrome

November 29, 2003

I had perforated ear drums for years, no pain. Keeping the ears dry

is really important, since water helps ctomas to grow. There are

pliable ear plugs that come in many colors. I've used them and they

work okay. But the advice given about not going underwater is a good

one. Nothing I've ever used kept the water out when I went under for

any length of time.

Connie

> Thanks Guys, for the advice on swim caps - will perserve and try

> and get him to tolerate them - guess if it is the choice between

> swimming or not he will put them in.

>

> I do have another question though - Kazz mentioned that she

> was 'suffering' from a perforation to her ear drum - Trent has a

> perforation to both ear drums - GP advised they would not heal -

> firstly I would like to know what pain/discomfort would be

> associated with a perforation and from experience would anyone

> disagree with our GP - personally I thought they would heal similar

> to grommets. As Trent is a non-verbal person and will not tell me

> if he is in pain at all - any insight to how he may be feeling would

> be greatly appreciated.

>

> Thanks

>

> Jan - mother of Trent 19yo with Downs Syndrome

November 29, 2003

I always had trouble with infection when I wore a hearing aid. I am

not sure if it would bother any one else. But I had trouble with

mine. Now it wouldnt work as there are no bones left. I always put

cotton balls in my ears and vasaline as well, someone mentioned the

knee and elbow bandages which fit great on the ear, I am adding that

to my list of prep for hair washing. I am really really carefull not

to get water in my ear, now it will take a sec longer to add the

bandage, but I want all the protection I can get! I was glad to learn

of the bandage on here. Thanks!

> Hi Jan

>

> I had (still have!) a very painful ear infection of the middle ear,

which

> led to the (also very painful) perforation of the eardrum and which

is

> currently proving resistant to the antibiotics I have been taking.

:-(

>

> Some people, however, have a permanent perforation of the eardrum;

in such

> cases the eardrum seems to have just 'worn through' and not

necessarily

> burst as the result of any trauma. In these cases, this hole is

tiny and

> will cause no pain and the patient usually won't notice it's

there. However

> because of that tiny hole, due care must be taken, because

submersion in

> water would allow the liquid easy access to the middle ear and

*that* would

> probably prove painful, and is also a good means by which

infections are

> caused.

>

> I also had grommets (I was 29 when I had these) and they didn't

hurt at all,

> either the surgery, or any stage afterwards.

>

> As regards water, I haven't been swimming since 1999 when my

cholesteatoma

> was both diagnosed and removed - for fear of making the situation

worse. I

> refuse to wear earplugs in my ears because I feel this might

encourage

> infection (such as my hearing aid currently seems to, which is the

reason

> I'm getting a BAHA) and would probably build up pressure within the

middle

> ear whilst sealing the ear from external influences. Before I wash

my hair,

> I put cotton wool and vaseline in my ears; if I weren't to go to

this

> 'trouble', I am almost guaranteed an infection - something I would

rather

> avoid.

>

> Hope this helps. :-)

>

> Kazz

> xx