Re: RE: Daughter just diagnosed

[Guest guest]

<PRE>Sorry, My name is . Your letter is very encouraging and I am going to

print it out for her to read. I know that when I stopped drinking for the

first time, volunteering to help others helped me a lot. That is what I am

encouraging her to do. Everything looked better and more colorful when I was

sober. Thanks for the imput, and your right, a sense of humor is of the

utmost importance to enjoy each day. While I was waiting for a response I did

find some other websites specifically for Hep C. Thank you so much.

[Guest guest]

Hi !

If you haven't already found it, a good Internet site is www.hepatitisneighborhood.com. There you and your daughter will find a lot of information on Hepatitis C as well as chat rooms where people have been on or are on treatment. They hold wonderful online symposiums.

I agree with Jerry, the sooner your daughter gets a liver biopsy and sees a Hepatologist, the sooner both of you will know the extent of liver damage. It's my understanding that the new treatment with Peg/Intron is easier on your body.

Good luck to you and your daughter.

Terri

Autoimmune Hepatitis 10/02

Primary Biliary Cirrhosis 10/02

[Guest guest]

<PRE>Thanks so much Terry. There were so many websites. Who knows which one to

choose? It is all so confusing!! I will get her to the doctors if I have to

hogtie her!! Thanks,

[Guest guest]

pmfsox?...... a couple of things......Hep C is definitely not a death

sentence.. it is treatable and somethng like 5% ever reach end stage

cirrhosis or get liver cancer.

HepC is a disease that follows alcohol abuse.. I am an alcoholic and

though I never had Hep C , I did have have a liver transplant due to end

stage cirrhosis caused by long time consumption of

alcohol....furthermore my wife died of alcoholic cirrhosis at age

39...she left 4 daughters under the age of 18...

I am a member of alcoholics anonymous and know many.many peope with Hep

C...they have or are having interferon

treatments and tho they say they aren't the most enjoyable things they

can think of, they all tolerate(d) them...the great majority who have

finished show no viral counts and are healthy

There are many safe, dependable anti-depressants on the market eadily

available and they work.

Twenty-five is not too young to stop drinking... (before it becomes a

problem.... which I suspect may or already is from her attitude) Women

get alcohol related problems more easily and die from them sooner than

men. Believe it or not we have members in AA who are in their early

teens as they recognized their unmanageablity and powerlessness over it

early.

Those kids have found out what I have found out .... that you

absolutely, absolutely do not need alcohol to have fun. I enjoy life now

(even with certain medical conditions) than I ever did in

35+ yrs of drinking..I remember everything I did last night and didn't

get a DUI today and don't have to apologize for something stupid I did

or said.

Most diseases left untreated probably will get worse.. interferon combos

seem to work

Hep. C is now the number ! reason for liver transplants today ......By

far the vast majority of those waiting for a donor liver will not get

one this year.

Hep C can give way to other problems (such as autoimmune hepatitis...

which I have..another incurable disease)

The longer she puts off treatment the more probable severe damage will

occur...her symptoms seem to suggest that is happening. She needs a

hepatologist and a liver biopsy to assess the extent of the damage to

her liver and to start treatment.

By far the ABSOLUTE WORSE thing she can do is drink alcohol. (Alcohol is

not nessessary to sustain life)

Although I can't speak for her.... it may be worthwhile for her look

HONESTLY at her alcohol use..... having Hep C and being a partying type

person suggests a problem with alcohol... another condition which can be

treated..... ask her if she would like to be 50 someday ....the only way

she can be 25 forever is to die before she's 26.

All that being said.... this particular site you've come into , although

for anyone with liver disease , is primarily populated by people with

autoimmune hepatitis or primary biliary cirrhosis or related conditions.

I'd be glad to find some Hepatitis C sites for you and of course you are

very welcome here anytime. Our group is a very helpful, friendly and

compassionate bunch and who love each other dearly and I'm sure would be

more than willing to offer whatever support we can. I personally would

like to help in any way I can, especially on the subjects of alcohol

abuse ( and treatment) and what its like to be living day to day with

end stage liver disease and the gift of life (tansplantation).

Jerry Fox (gefox@...)

Akron Ohio

transplanted Oct.19, 1995

diagnosed multiple myeloma Dec. 1998

diagnosed autoimmune hepatitis Aug. 2000.

Been sober since April, 29 1994

Having a good sense of humor will extend the enjoyment of, if not the

length of, anyones life. Laugh at all the things you can. (and you can

find plenty to laugh at in this world believe me) Don't sweat the small

stuff.

<PRE>Hi everyone, my daughter, aged 25 was just diagnosed with Hepititus C. She

is

devestated as we all are. She does love to party, and drinks too much. When

told she could not, she said, " I am only 25, I am too young not to be able

to drink anymore " . Like that was the most important thing in the world! She

had severe complexity when she had her count done. She has yet to see a

specialist and keeps putting it off. She has lost a lot of wieght, is very

tired all the time, and very depressed. She suffered from anxiety-attacks

most of her adult life and has heard that the treatment with Inteferon will

make her even more depressed. We are trying to learn about this disease so we

can help her. Any advice?

[Guest guest]

...you are more than welcome and my offer stands....any time you

want to talk about livers, alcoholism or to let off steam,or anything

don't hesitate to write me at my personal Email address. Helping others

keeps me sober.

I'm praying for the best for you and your family and I know everything

will turn out just right .

love jerry

[Guest guest]

Thanks Terri..... I couldn't think of the PEG treatment and I understand

its a lot better now in combo with the interferon.. I knew someone here

would have links to Hep C sites.

love jerry

[Guest guest]

>

> From: pmfsox@...

> Date: Sun 29/Dec/2002 01:48 GMT

>

> Subject: [ ] RE: Daughter just diagnosed

>

> <PRE>Hi everyone, my daughter, aged 25 was just diagnosed with Hepititus C.

She is

> devestated as we all are. She does love to party, and drinks too much. When

> told she could not, she said, " I am only 25, I am too young not to be able

> to drink anymore " . Like that was the most important thing in the world! She

> had severe complexity when she had her count done. She has yet to see a

> specialist and keeps putting it off. She has lost a lot of wieght, is very

> tired all the time, and very depressed. She suffered from anxiety-attacks

> most of her adult life and has heard that the treatment with Inteferon will

> make her even more depressed. We are trying to learn about this disease so we

> can help her. Any advice?

>

>

[Guest guest]

Jerry, you amaze me! You have been through so much, but have such a

wonderful attitude. Congrats on your sobriety!

Debby

Re: [ ] RE: Daughter just diagnosed

> pmfsox?...... a couple of things......Hep C is definitely not a death

> sentence.. it is treatable and somethng like 5% ever reach end stage

> cirrhosis or get liver cancer.

>

> HepC is a disease that follows alcohol abuse.. I am an alcoholic and

> though I never had Hep C , I did have have a liver transplant due to end

> stage cirrhosis caused by long time consumption of

> alcohol....furthermore my wife died of alcoholic cirrhosis at age

> 39...she left 4 daughters under the age of 18...

>

> I am a member of alcoholics anonymous and know many.many peope with Hep

> C...they have or are having interferon

> treatments and tho they say they aren't the most enjoyable things they

> can think of, they all tolerate(d) them...the great majority who have

> finished show no viral counts and are healthy

>

> There are many safe, dependable anti-depressants on the market eadily

> available and they work.

>

> Twenty-five is not too young to stop drinking... (before it becomes a

> problem.... which I suspect may or already is from her attitude) Women

> get alcohol related problems more easily and die from them sooner than

> men. Believe it or not we have members in AA who are in their early

> teens as they recognized their unmanageablity and powerlessness over it

> early.

>

> Those kids have found out what I have found out .... that you

> absolutely, absolutely do not need alcohol to have fun. I enjoy life now

> (even with certain medical conditions) than I ever did in

> 35+ yrs of drinking..I remember everything I did last night and didn't

> get a DUI today and don't have to apologize for something stupid I did

> or said.

>

> Most diseases left untreated probably will get worse.. interferon combos

> seem to work

>

> Hep. C is now the number ! reason for liver transplants today ......By

> far the vast majority of those waiting for a donor liver will not get

> one this year.

>

> Hep C can give way to other problems (such as autoimmune hepatitis...

> which I have..another incurable disease)

>

> The longer she puts off treatment the more probable severe damage will

> occur...her symptoms seem to suggest that is happening. She needs a

> hepatologist and a liver biopsy to assess the extent of the damage to

> her liver and to start treatment.

>

> By far the ABSOLUTE WORSE thing she can do is drink alcohol. (Alcohol is

> not nessessary to sustain life)

>

> Although I can't speak for her.... it may be worthwhile for her look

> HONESTLY at her alcohol use..... having Hep C and being a partying type

> person suggests a problem with alcohol... another condition which can be

> treated..... ask her if she would like to be 50 someday ....the only way

> she can be 25 forever is to die before she's 26.

>

> All that being said.... this particular site you've come into , although

> for anyone with liver disease , is primarily populated by people with

> autoimmune hepatitis or primary biliary cirrhosis or related conditions.

> I'd be glad to find some Hepatitis C sites for you and of course you are

> very welcome here anytime. Our group is a very helpful, friendly and

> compassionate bunch and who love each other dearly and I'm sure would be

> more than willing to offer whatever support we can. I personally would

> like to help in any way I can, especially on the subjects of alcohol

> abuse ( and treatment) and what its like to be living day to day with

> end stage liver disease and the gift of life (tansplantation).

>

> Jerry Fox (gefox@...)

> Akron Ohio

> transplanted Oct.19, 1995

> diagnosed multiple myeloma Dec. 1998

> diagnosed autoimmune hepatitis Aug. 2000.

> Been sober since April, 29 1994

>

> Having a good sense of humor will extend the enjoyment of, if not the

> length of, anyones life. Laugh at all the things you can. (and you can

> find plenty to laugh at in this world believe me) Don't sweat the small

> stuff.

>

>

>

[Guest guest]

Anita...... do you have Hepatitis C? I'm confused I thought you had

AIH....they are 2 completely different diseases. Who told you that you

have to give up chocolate and butter, never heard of that. But I don't

know everything, I just think I do.

Hope all is well.

love jerry

[Guest guest]

>

> From: gefox@...

> Date: Sun 29/Dec/2002 21:42 GMT

>

> Subject: Re: [ ] RE: Daughter just diagnosed

>

> Anita...... do you have Hepatitis C? I'm confused I thought you had

> AIH....they are 2 completely different diseases. Who told you that you

> have to give up chocolate and butter, never heard of that. But I don't

> know everything, I just think I do.

> Hope all is well.

>

> love jerry

>

>

>

[Guest guest]

I'm sorry you didn't leave your name.

My 2 cents worth after dealing with my mom who has moderate anxiety attacks,

and high stress.

The only way I got her to see a doctor/specialist when she first became

ill/yellow (jaundice), was to have her see a psychologist. That doc was

wonderful in balancing the psychologic needs and worries along with how the

body might respond to these issues. From trhere she saw a doc who smartly

referred her to internal specialist. She still sees both, to help with both

sides. Although she rarely drank, she often took on way more

responsibility, and concerns of others when she didn't need to. Getting her

to relinquish this is more difficult than dealing with the disease itself.

She has finally after 3 months realized to live she must stop those

activities.

I hope this helps,

Kat

[ ] RE: Daughter just diagnosed

> <PRE>Hi everyone, my daughter, aged 25 was just diagnosed with Hepititus

C. She is

> devestated as we all are. She does love to party, and drinks too much.

When

> told she could not, she said, " I am only 25, I am too young not to be

able

> to drink anymore " . Like that was the most important thing in the world!

She

> had severe complexity when she had her count done. She has yet to see a

> specialist and keeps putting it off. She has lost a lot of wieght, is very

> tired all the time, and very depressed. She suffered from anxiety-attacks

> most of her adult life and has heard that the treatment with Inteferon

will

> make her even more depressed. We are trying to learn about this disease so

we

> can help her. Any advice?

>

>

[Guest guest]

Jerry,

Second that statement!!! Glad to have your inspiration and knowledge during

this time learning about my mom's " known " disease.

Thanks

Kat

Re: [ ] RE: Daughter just diagnosed

>

>

> > pmfsox?...... a couple of things......Hep C is definitely not a death

> > sentence.. it is treatable and somethng like 5% ever reach end stage

> > cirrhosis or get liver cancer.

> >

> > HepC is a disease that follows alcohol abuse.. I am an alcoholic and

> > though I never had Hep C , I did have have a liver transplant due to end

> > stage cirrhosis caused by long time consumption of

> > alcohol....furthermore my wife died of alcoholic cirrhosis at age

> > 39...she left 4 daughters under the age of 18...

> >

> > I am a member of alcoholics anonymous and know many.many peope with Hep

> > C...they have or are having interferon

> > treatments and tho they say they aren't the most enjoyable things they

> > can think of, they all tolerate(d) them...the great majority who have

> > finished show no viral counts and are healthy

> >

> > There are many safe, dependable anti-depressants on the market eadily

> > available and they work.

> >

> > Twenty-five is not too young to stop drinking... (before it becomes a

> > problem.... which I suspect may or already is from her attitude) Women

> > get alcohol related problems more easily and die from them sooner than

> > men. Believe it or not we have members in AA who are in their early

> > teens as they recognized their unmanageablity and powerlessness over it

> > early.

> >

> > Those kids have found out what I have found out .... that you

> > absolutely, absolutely do not need alcohol to have fun. I enjoy life now

> > (even with certain medical conditions) than I ever did in

> > 35+ yrs of drinking..I remember everything I did last night and didn't

> > get a DUI today and don't have to apologize for something stupid I did

> > or said.

> >

> > Most diseases left untreated probably will get worse.. interferon combos

> > seem to work

> >

> > Hep. C is now the number ! reason for liver transplants today ......By

> > far the vast majority of those waiting for a donor liver will not get

> > one this year.

> >

> > Hep C can give way to other problems (such as autoimmune hepatitis...

> > which I have..another incurable disease)

> >

> > The longer she puts off treatment the more probable severe damage will

> > occur...her symptoms seem to suggest that is happening. She needs a

> > hepatologist and a liver biopsy to assess the extent of the damage to

> > her liver and to start treatment.

> >

> > By far the ABSOLUTE WORSE thing she can do is drink alcohol. (Alcohol is

> > not nessessary to sustain life)

> >

> > Although I can't speak for her.... it may be worthwhile for her look

> > HONESTLY at her alcohol use..... having Hep C and being a partying type

> > person suggests a problem with alcohol... another condition which can be

> > treated..... ask her if she would like to be 50 someday ....the only way

> > she can be 25 forever is to die before she's 26.

> >

> > All that being said.... this particular site you've come into , although

> > for anyone with liver disease , is primarily populated by people with

> > autoimmune hepatitis or primary biliary cirrhosis or related conditions.

> > I'd be glad to find some Hepatitis C sites for you and of course you are

> > very welcome here anytime. Our group is a very helpful, friendly and

> > compassionate bunch and who love each other dearly and I'm sure would be

> > more than willing to offer whatever support we can. I personally would

> > like to help in any way I can, especially on the subjects of alcohol

> > abuse ( and treatment) and what its like to be living day to day with

> > end stage liver disease and the gift of life (tansplantation).

> >

> > Jerry Fox (gefox@...)

> > Akron Ohio

> > transplanted Oct.19, 1995

> > diagnosed multiple myeloma Dec. 1998

> > diagnosed autoimmune hepatitis Aug. 2000.

> > Been sober since April, 29 1994

> >

> > Having a good sense of humor will extend the enjoyment of, if not the

> > length of, anyones life. Laugh at all the things you can. (and you can

> > find plenty to laugh at in this world believe me) Don't sweat the small

> > stuff.

> >

> >

> >

[Guest guest]

Kat....the main problem this girl has is alcohol...believe me... the

anxiety and stress stuff is secondary ... This is one subject I know a

lot about....if she would stop drinking all that other stuff would clear

itself....even if I'm wrong she can't be successfully treated for them

till she addresses her alcoholism first. An alcoholic is the oposite of

your mother. They are selfish and think only of putting themselves

first. The next drink is the most important thing to them. They won't

seek help because they are afraid to let go of thier drinking....they

don't think they can go through life never having a drink so they avoid

and deny and make excuses. The daughter won't seek help for her Hep C

because she knows what that means. Shes waiting for something to happen

If you read between the lines of this letter you'll see what I'm saying

is true. hes says she's frightened because of the interferon but she

says she's only 25 and too young to stop drinking. Notice the Hep C

isn't what scares he but the life saving treatment....but because of her

attitude toward giving up " partying " what really scares her the most is

facing life without alcohol which is the most important part of the

treatment. She'll never seek treatment till she bottoms out, or gets so

sick that the prospect of dying becomes more frightening than

" interfuron " (if ever). She knows the interferon won't cause a deep

depression cause she's already there. Notice that I danced around the

alcoholism with her mother (), but knows that I know what her

real problem is.... knows this also because she has issues of her

own with alcohol.

The biggest part of treatment for alcoholism is getting out of ones self

and putting others first. Helping others keeps us sober and we try to

devote as much time as we can in helping others..especially suffering

alcoholics

" relieve me of the bondage of self that I might better do Thy will.

Take away my difficulties, that victory over them may bear witness to

those I would help of Thy power, Thy love and Thy way of life. "

Your mother is a saint...her concern for others over herself is what God

wants for us all.

I pray for 's daughter.

[Guest guest]

Jerry,

I thoroughly agree with the primary issue you describe, and have dealt with

many friends and several X's with the same issue. [i live in resort

town/party central where everything is solved with a drink. :-( ] In my

experience with 2 close friends, we eased them into dealing with their

underlying issues with which they chose to drink to hide by getting them to

a psychologist experienced in alcoholism/addictions. After they started to

work beyond the denial, their families placed them in treatment and they are

now 17 and 11 years sober. :-) I still recall the day I drove them to their

first meeting and held their hand throughout the meeting. I was 18 and 24

then, but it was like yesterday. The stories I heard...

you really have to be congratulated for combating a daily disease and

staying sober!

Here's to furthering that commitment!

Kat

Re: [ ] RE: Daughter just diagnosed

> Kat....the main problem this girl has is alcohol...believe me... the

> anxiety and stress stuff is secondary ... This is one subject I know a

> lot about....if she would stop drinking all that other stuff would clear

> itself....even if I'm wrong she can't be successfully treated for them

> till she addresses her alcoholism first. An alcoholic is the oposite of

> your mother. They are selfish and think only of putting themselves

> first. The next drink is the most important thing to them. They won't

> seek help because they are afraid to let go of thier drinking....they

> don't think they can go through life never having a drink so they avoid

> and deny and make excuses. The daughter won't seek help for her Hep C

> because she knows what that means. Shes waiting for something to happen

> If you read between the lines of this letter you'll see what I'm saying

> is true. hes says she's frightened because of the interferon but she

> says she's only 25 and too young to stop drinking. Notice the Hep C

> isn't what scares he but the life saving treatment....but because of her

> attitude toward giving up " partying " what really scares her the most is

> facing life without alcohol which is the most important part of the

> treatment. She'll never seek treatment till she bottoms out, or gets so

> sick that the prospect of dying becomes more frightening than

> " interfuron " (if ever). She knows the interferon won't cause a deep

> depression cause she's already there. Notice that I danced around the

> alcoholism with her mother (), but knows that I know what her

> real problem is.... knows this also because she has issues of her

> own with alcohol.

> The biggest part of treatment for alcoholism is getting out of ones self

> and putting others first. Helping others keeps us sober and we try to

> devote as much time as we can in helping others..especially suffering

> alcoholics

>

> " relieve me of the bondage of self that I might better do Thy will.

> Take away my difficulties, that victory over them may bear witness to

> those I would help of Thy power, Thy love and Thy way of life. "

>

> Your mother is a saint...her concern for others over herself is what God

> wants for us all.

>

> I pray for 's daughter.

>

>

>

[Guest guest]

Jerry,

I thoroughly agree with the primary issue you describe, and have dealt with

many friends and several X's with the same issue. [i live in resort

town/party central where everything is solved with a drink. :-( ] In my

experience with 2 close friends, we eased them into dealing with their

underlying issues with which they chose to drink to hide by getting them to

a psychologist experienced in alcoholism/addictions. After they started to

work beyond the denial, their families placed them in treatment and they are

now 17 and 11 years sober. :-) I still recall the day I drove them to their

first meeting and held their hand throughout the meeting. I was 18 and 24

then, but it was like yesterday. The stories I heard...

you really have to be congratulated for combating a daily disease and

staying sober!

Here's to furthering that commitment!

Kat

Re: [ ] RE: Daughter just diagnosed

> Kat....the main problem this girl has is alcohol...believe me... the

> anxiety and stress stuff is secondary ... This is one subject I know a

> lot about....if she would stop drinking all that other stuff would clear

> itself....even if I'm wrong she can't be successfully treated for them

> till she addresses her alcoholism first. An alcoholic is the oposite of

> your mother. They are selfish and think only of putting themselves

> first. The next drink is the most important thing to them. They won't

> seek help because they are afraid to let go of thier drinking....they

> don't think they can go through life never having a drink so they avoid

> and deny and make excuses. The daughter won't seek help for her Hep C

> because she knows what that means. Shes waiting for something to happen

> If you read between the lines of this letter you'll see what I'm saying

> is true. hes says she's frightened because of the interferon but she

> says she's only 25 and too young to stop drinking. Notice the Hep C

> isn't what scares he but the life saving treatment....but because of her

> attitude toward giving up " partying " what really scares her the most is

> facing life without alcohol which is the most important part of the

> treatment. She'll never seek treatment till she bottoms out, or gets so

> sick that the prospect of dying becomes more frightening than

> " interfuron " (if ever). She knows the interferon won't cause a deep

> depression cause she's already there. Notice that I danced around the

> alcoholism with her mother (), but knows that I know what her

> real problem is.... knows this also because she has issues of her

> own with alcohol.

> The biggest part of treatment for alcoholism is getting out of ones self

> and putting others first. Helping others keeps us sober and we try to

> devote as much time as we can in helping others..especially suffering

> alcoholics

>

> " relieve me of the bondage of self that I might better do Thy will.

> Take away my difficulties, that victory over them may bear witness to

> those I would help of Thy power, Thy love and Thy way of life. "

>

> Your mother is a saint...her concern for others over herself is what God

> wants for us all.

>

> I pray for 's daughter.

>

>

>

[Guest guest]

Thanks Kat...you have an excellent grasp of the disease of alcoholism

(for an earth person).... note that alcoholism is not a psychological

disorder. Your psycholgist ended up by taking them to treatment and

eventually to A.A. The only treatment is a complete abstension from

drinking...you're never cured. One drink can kick in a physical craving

and you're on that elevator down again. How very loving of you to

accompany them to their first meeting. It can be very scary and

bewildering to some. You are a very kind and toughtful person to go

with your obvious intelligence. I'm glad you're here . I enjoy swapping

posts with you. Thanks again. (btw... I too take care of my mom...shes

87....well actually she takes care of me.....sort of a symbiotic

relationship)

love jerry

This is it .... I've been up all nite catching up on posts and I can't

do anymore.....everybody will just have to cure themselves....you are

all such wonderful people....

[Guest guest]

Jerry,

Thank you, I enjoy it too. I hope someday I can again have a symbiotic, or

rather back to a newly regenerated friendship with my mom; although it sees

very far away at present.:-( Right now I still feel like the " mom " . This

is now even tougher as my " little " bite wound now will take 3-6 weeks on

antibiotics and require my hand in a splint (makes for interesting typing!).

Still I have 3 rooms to finish remodeling and painting and work a 60 hour

work sched. for the coming month. Seriously tired here, and frustrated.

This guy...wish he would change his luck for the better!

Kat

Re: [ ] RE: Daughter just diagnosed

> Thanks Kat...you have an excellent grasp of the disease of alcoholism

> (for an earth person).... note that alcoholism is not a psychological

> disorder. Your psycholgist ended up by taking them to treatment and

> eventually to A.A. The only treatment is a complete abstension from

> drinking...you're never cured. One drink can kick in a physical craving

> and you're on that elevator down again. How very loving of you to

> accompany them to their first meeting. It can be very scary and

> bewildering to some. You are a very kind and toughtful person to go

> with your obvious intelligence. I'm glad you're here . I enjoy swapping

> posts with you. Thanks again. (btw... I too take care of my mom...shes

> 87....well actually she takes care of me.....sort of a symbiotic

> relationship)

>

> love jerry

>

> This is it .... I've been up all nite catching up on posts and I can't

> do anymore.....everybody will just have to cure themselves....you are

> all such wonderful people....

>

>

>

[Guest guest]

Hi, I would suggest that you look for a specialist. We were seeing an ENT initially. He actually came in the day of my son's surgery and referred us to a specialist. That referral probably saved my son 4 to 5 surgeries. It makes a huge difference to have someone who sees choleteatomas on a regular basis.Sent on the Sprint® Now Network from my BlackBerry®From: "lklebs1" <lklebs1@...>Date: Mon, 26 Oct 2009 07:45:06 -0000<cholesteatoma >Subject: Re: Daughter just diagnosed Hello,I am new here but I would advise you to try and find a doctor who only does ear surgery. We started out with an ENT but had to be transferred to a ear specialty doctor because my daughter has a very rare case of bilateral cholesteatoma. They are also very aggressive growing ones. I don't know how bad a case your daughter has but to me if I had done a little research I would have gone to an ear specialist in the first place and just skipped the ENT all together. I just don't think they have dealt with as many cases as an ear specialist. It might have saved some of my daughters hearing if we had found the House Clinic in LA sooner than we did.Some may think this is just a simple surgery but with all the damage my daughter has had to her hearing, I wouldn't chance it. If you can get her to an ear specialist, I would. I know if I had it to do over again that's what I would do. I hope this helps. And I am so sorry you have to go through this too. I hope you have a much better outcome than we have.>> Hello. I've been reading the group for a few weeks now. My daughter had been complaining of an ear ache and muffled hearing in her left ear. I took her to her pediatrician who put her on oral antibiotics for what appeared to be a bad ear infection. 10-days later there was no improvement, so we saw a local ENT. The ENT doctor did a suction procedure in the office, prescribed ear drops and ordered a CT Scan and hearing test.> > We had the follow-up appointment today where he confirmed that it was a c-toma and that surgery is needed. He is recommending two surgeries - one to remove the c-toma and a second look in 6-9 months.> > The doctor we saw is an ordinary ENT. He says he has done about 100 of these surgeries, but that doesn't sound like very many to me for someone who has been in practice for more than 20 years. Anyone have any suggestions for doctors for a second opinion in the Boston area? I am leaning toward going to Mass Eye & Ear. I think their doctors probably do 100 of these surgeries every year.>

[Guest guest]

We also initially fooled around with a local ENT for several months.

We now see a pediatric ENT. The difference is that there is extensive

Ctoma training for most pediatric fellowship programs, and the

advantage is they are very good at little ears. Also, small children

seem to have related issues, ie adenoids, etc that are related to poor

ETF, so we have been blessed to have one surgeon well trained for all

her issues (she also has reflux).

One thing I will say is that it is a eye and ear only teaching

hospital that has the advantage of having many specialists available

for consult at a moment's notice. Their ER is amazing too! They were

so good when Chloe had to go in with mastoiditis that had formed a

huge abscess behind her ear. It was a holiday weekend, and she got

such good care while waiting for her regular surgeon to return.

I imagine the House Ear clinic is a similar situation.

On 10/26/09, courtneyartis3@... <courtneyartis3@...> wrote:

> Hi, I would suggest that you look for a specialist. We were seeing an ENT

> initially. He actually came in the day of my son's surgery and referred us

> to a specialist. That referral probably saved my son 4 to 5 surgeries. It

> makes a huge difference to have someone who sees choleteatomas on a regular

> basis.

> Sent on the Sprint® Now Network from my BlackBerry®

>

> Re: Daughter just diagnosed

>

> Hello,

> I am new here but I would advise you to try and find a doctor who only does

> ear surgery.

> We started out with an ENT but had to be transferred to a ear specialty

> doctor because my daughter has a very rare case of bilateral cholesteatoma.

> They are also very aggressive growing ones.

> I don't know how bad a case your daughter has but to me if I had done a

> little research I would have gone to an ear specialist in the first place

> and just skipped the ENT all together. I just don't think they have dealt

> with as many cases as an ear specialist. It might have saved some of my

> daughters hearing if we had found the House Clinic in LA sooner than we

> did.

> Some may think this is just a simple surgery but with all the damage my

> daughter has had to her hearing, I wouldn't chance it. If you can get her to

> an ear specialist, I would. I know if I had it to do over again that's what

> I would do.

> I hope this helps. And I am so sorry you have to go through this too. I

> hope you have a much better outcome than we have.

>

>

>>

>> Hello. I've been reading the group for a few weeks now. My daughter had

>> been complaining of an ear ache and muffled hearing in her left ear. I

>> took her to her pediatrician who put her on oral antibiotics for what

>> appeared to be a bad ear infection. 10-days later there was no

>> improvement, so we saw a local ENT. The ENT doctor did a suction procedure

>> in the office, prescribed ear drops and ordered a CT Scan and hearing

>> test.

>>

>> We had the follow-up appointment today where he confirmed that it was a

>> c-toma and that surgery is needed. He is recommending two surgeries - one

>> to remove the c-toma and a second look in 6-9 months.

>>

>> The doctor we saw is an ordinary ENT. He says he has done about 100 of

>> these surgeries, but that doesn't sound like very many to me for someone

>> who has been in practice for more than 20 years. Anyone have any

>> suggestions for doctors for a second opinion in the Boston area? I am

>> leaning toward going to Mass Eye & Ear. I think their doctors probably do

>> 100 of these surgeries every year.

>>

>

>

>

>

[Guest guest]

We've done Christmas break twice and a Thanksgiving, plus a bunch of

summer vacation. She ended up with double the Christmas presents since

everyone was feeling sad for her, so she never minded. If this is your

daughter's first surgery, it might be worth meeting Cross, the

child life specialist. She would relate very well even to a teen and

can answer a lot of questions about what surgery day is like. I think

anyone under 18 usually goes to the OR off of the pediatrics unit.

(It's much better, in my opinion, since a parent can go down to the OR

and the staff is super nurturing). I think some other people also have

had experience with the adult side of MEEI.

Good luck! It's a great place. Who are you seeing? My friend had hers

done by McKenna, and my dad saw Dr. Rauch for some other probs.

On 10/27/09, nomarsgirl02129 <nomarsgirl02129@...> wrote:

> Thank you all for your input. We do have an appointment at Mass Eye & Ear

> Infirmary in Boston with one of their surgeons who has completed a

> fellowship in otology and only works on ears. I would have skipped the local

> ENT altogether if I had known that we were facing something requiring

> surgical intervention rather than just medicine. I will give the local ENT a

> lot of credit for ordering the appropriate tests. Now I can go to this

> appointment with the CT scan and hearing test results in hand, as well as

> the ENT's own notes.

>

> I just feel like I wasted a lot of time. We started at her own pediatrician

> on 9/11 with what we assumed was an ear infection. Our appointment with the

> new specialist is on 11/9. And after the consult with this new doctor, we

> will finally be able to schedule the surgery. As much as I hate to do it to

> her, I would love to be able to schedule it over Christmas break so she

> doesn't miss time in school. She's in high school now and it is hard to

> catch up when she misses classes.

>

>

>

>> >>

>> >> Hello. I've been reading the group for a few weeks now. My daughter had

>> >> been complaining of an ear ache and muffled hearing in her left ear. I

>> >> took her to her pediatrician who put her on oral antibiotics for what

>> >> appeared to be a bad ear infection. 10-days later there was no

>> >> improvement, so we saw a local ENT. The ENT doctor did a suction

>> >> procedure

>> >> in the office, prescribed ear drops and ordered a CT Scan and hearing

>> >> test.

>> >>

>> >> We had the follow-up appointment today where he confirmed that it was a

>> >> c-toma and that surgery is needed. He is recommending two surgeries -

>> >> one

>> >> to remove the c-toma and a second look in 6-9 months.

>> >>

>> >> The doctor we saw is an ordinary ENT. He says he has done about 100 of

>> >> these surgeries, but that doesn't sound like very many to me for

>> >> someone

>> >> who has been in practice for more than 20 years. Anyone have any

>> >> suggestions for doctors for a second opinion in the Boston area? I am

>> >> leaning toward going to Mass Eye & Ear. I think their doctors probably

>> >> do

>> >> 100 of these surgeries every year.

>> >>

>> >

>> >

>> >

>> >

>>

>

>

>

>

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

>

>