Just diagnosed

January 30, 2008

Hi i am 32 and have also suffered with ear problems for a long time. I

had an ear infection for 6 months last year which wouldn't clear up

with various medications so was referred to the ENT specialist, i was

diagnosed with cholestestoma in both ears in December 2007. I had the

mastiodectomy with some bones replaced by prosthesis on my right ear on

17th January 2008 and am feeling fine now. Not back at work yet as i

have been advised that i need two weeks off. Stopped taking pain

killers about 10 days after operation but had to go back 5 days after

the operation for some antibiotics as they suspected i may have had an

infection. Still have the packing in my ears till the 13th Feb but can

hear something in the operated ear so everything is looking promising.

I would say that you really wouldn't want to do much for 8-9 days after

the operation, after that you will most likely to be bored doing

nothing apart from watching TV and reading!

Hope the surgery goes well.

,

UK

>

> Hello to everyone. I was just diagnosed with cholesteatoma. I have

> had chronic ear infections most of my junvenile years and a couple

> every year after that. I have had drainage pretty much half my life

> as far as I can remember, and I am 30. I recently started getting

more

> ear infections more regularly and antibiotics were not helping. Had

a

> CT Scan on Monday and results today were a mastiodectomy. The doctor

> said recovery time is a few days a week at max. After reading, it

> seems recovery time for most was longer. Any advice for me or

> questions I should ask the doctor. Thanks in advance and good luck

to

> everyone going through this.

>

January 31, 2008

> Hello to

> everyone. I was just diagnosed

> with cholesteatoma. I have

> had chronic ear infections most of my junvenile years and a couple

> every year after that. I have had drainage pretty much half my life

> as far as I can remember, and I am 30. I recently started getting more

> ear infections more regularly and antibiotics were not helping. Had a

> CT Scan on Monday and results today were a mastiodectomy. The doctor

> said recovery time is a few days a week at max. After reading, it

> seems recovery time for most was longer. Any advice for me or

> questions I should ask the doctor. Thanks in advance and good luck to

> everyone going through this.

>

Hi,

I am 56 years old and was diagnosed with c-toma in my left ear back in

2000. Like you I'd had continuous ear trouble for as long as I could

remember, due to dysfunctional eustachian tubes.

I underwent a Canal Wall Up mastoidectomy in April 2000. Time in Surgery

was around three hours. I stayed overnifght and was discharged to home the

following morning. I was told to take two weeks off work, I think I took

10-11 days in the end. There was no pain at any stage apart from a very

slight soreness from the stitches behind my ear - that's not everyone's

experience by any means, but it was mine.

You will definitely need a few days for your body to completely recover

from the general anaeathetic - it's not unpleasant, just leaves you a

little bit tired. You may find that having the packing in your ear

becomes a little irritating after a week or two; I was quite glad when

the surgeon removed it three weeks after the operation. The irritation

though was mainly the smell of ether and the fact that the outer end of

the packing set like concrete once it had dried out (UK surgeons

sometimes use ribbon gauze rather than the gel packing you will see

discussed frequently on this site.)

I did have some tinnitus in the ear for a month or two as it was settling

down, but that ceased once the ear had recovered. I also had a metallic

taste in one side of my mouth for a few months due to the c-toma removal

taking out one of my taste nerves; this is quite common, but fortunately

the body is capable of re-wiring itself in this area. In my case my taste

returned completely to normal before six months had passed.

All in all it was a bit of a breeze - but I do accept I was lucky !

,

UK

-----------------------------------------

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February 6, 2008

>

> > Hello to

> > everyone. I was just diagnosed

> > with cholesteatoma. I have

> > had chronic ear infections most of my junvenile years and a

couple

> > every year after that. I have had drainage pretty much half my

life

> > as far as I can remember, and I am 30. I recently started

getting more

> > ear infections more regularly and antibiotics were not helping.

Had a

> > CT Scan on Monday and results today were a mastiodectomy. The

doctor

> > said recovery time is a few days a week at max. After reading,

it

> > seems recovery time for most was longer. Any advice for me or

> > questions I should ask the doctor. Thanks in advance and good

luck to

> > everyone going through this.

> >

>

> Hi,

>

> I am 56 years old and was diagnosed with c-toma in my left ear back

in

> 2000. Like you I'd had continuous ear trouble for as long as I

could

> remember, due to dysfunctional eustachian tubes.

>

> I underwent a Canal Wall Up mastoidectomy in April 2000. Time in

Surgery

> was around three hours. I stayed overnifght and was discharged to

home the

> following morning. I was told to take two weeks off work, I think I

took

> 10-11 days in the end. There was no pain at any stage apart from a

very

> slight soreness from the stitches behind my ear - that's not

everyone's

> experience by any means, but it was mine.

>

> You will definitely need a few days for your body to completely

recover

> from the general anaeathetic - it's not unpleasant, just leaves you

a

> little bit tired. You may find that having the packing in your ear

> becomes a little irritating after a week or two; I was quite glad

when

> the surgeon removed it three weeks after the operation. The

irritation

> though was mainly the smell of ether and the fact that the outer

end of

> the packing set like concrete once it had dried out (UK surgeons

> sometimes use ribbon gauze rather than the gel packing you will see

> discussed frequently on this site.)

>

> I did have some tinnitus in the ear for a month or two as it was

settling

> down, but that ceased once the ear had recovered. I also had a

metallic

> taste in one side of my mouth for a few months due to the c-toma

removal

> taking out one of my taste nerves; this is quite common, but

fortunately

> the body is capable of re-wiring itself in this area. In my case

my taste

> returned completely to normal before six months had passed.

>

> All in all it was a bit of a breeze - but I do accept I was lucky !

>

> ,

> UK

>

> Hi , i am also in the UK and have just been diagnosed with C-

toma, could you please let me know if you had any hearing loss after

the operation or is your hearing back to normal now.

Thanks

Gav

Chesterfield UK

>

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

> This email was sent from supanet.com.

> http://www.supanet.com/

>

February 6, 2008

Hello Gavin

I'm also in the UK. I had a cholesteatoma removed from my right ear in November 1999. I had reconstruction done at the same time, and that lasted for some 3½ years, before a massive infection caused it to fail. I now have a BAHA and enjoy life again <grin>.

Kazzy :-)

Re: Just Diagnosed

>> > > Hello to> > everyone. I was just diagnosed> > with cholesteatoma. I have> > had chronic ear infections most of my junvenile years and a couple> > every year after that. I have had drainage pretty much half my life> > as far as I can remember, and I am 30. I recently started getting more> > ear infections more regularly and antibiotics were not helping. Had a> > CT Scan on Monday and results today were a mastiodectomy. The doctor> > said recovery time is a few days a week at max. After reading, it> > seems recovery time for most was longer. Any advice for me or> > questions I should ask the doctor. Thanks in advance and good luck to> > everyone going through this.> >> > Hi,> > I am 56 years old and was diagnosed with c-toma in my left ear back in> 2000. Like you I'd had continuous ear trouble for as long as I could> remember, due to dysfunctional eustachian tubes.> > I underwent a Canal Wall Up mastoidectomy in April 2000. Time in Surgery> was around three hours. I stayed overnifght and was discharged to home the> following morning. I was told to take two weeks off work, I think I took> 10-11 days in the end. There was no pain at any stage apart from a very> slight soreness from the stitches behind my ear - that's not everyone's> experience by any means, but it was mine.> > You will definitely need a few days for your body to completely recover> from the general anaeathetic - it's not unpleasant, just leaves you a> little bit tired. You may find that having the packing in your ear> becomes a little irritating after a week or two; I was quite glad when> the surgeon removed it three weeks after the operation. The irritation> though was mainly the smell of ether and the fact that the outer end of> the packing set like concrete once it had dried out (UK surgeons> sometimes use ribbon gauze rather than the gel packing you will see> discussed frequently on this site.)> > I did have some tinnitus in the ear for a month or two as it was settling> down, but that ceased once the ear had recovered. I also had a metallic> taste in one side of my mouth for a few months due to the c-toma removal> taking out one of my taste nerves; this is quite common, but fortunately> the body is capable of re-wiring itself in this area. In my case my taste> returned completely to normal before six months had passed.> > All in all it was a bit of a breeze - but I do accept I was lucky !> > ,> UK> > Hi , i am also in the UK and have just been diagnosed with C-toma, could you please let me know if you had any hearing loss after the operation or is your hearing back to normal now.Thanks GavChesterfield UK> > -----------------------------------------> This email was sent from supanet.com.> http://www.supanet.com/>

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February 7, 2008

Gav wrote :-

> Hi , i am also in the UK and have just been diagnosed with C-

> toma, could you please let me know if you had any hearing loss after

> the operation or is your hearing back to normal now.

Hi Gav,

Yes I did have some hearing loss after the first operation. This was

partly because the C-Toma had been conducting sound for me ( I was warned

this might be the case ) and partly because the surgeon temporarily

removed at least one out of the hearing bones during the operation.

The bone(s) he had removed was carefully filed and was re-inserted when he

did the second (reconstruction) operation a year later. The

reconstruction however was not hugely successful from the hearing point of

view, so what had been my better ear became my not-so-good ear. The

surgeon has hinted that he thinks he could do better if he had another

try, but has never seriously suggested scheduling another operation - I

think he's leaving it to me to decide whether I want to push for it.

Having said all this, my hearing has been continuously variable since I

was about 4 years old so the overall effect of the hearing loss has been

slight. All it has really meant is that I was recommended to move my

(analogue) hearing aid from the other ear to the operated ear.

In the six/seven years since my operations, the hearing in my " good " ear

has deteriorated somewhat so I have now been prescribed new digital

hearing aids for both ears, which I am picking up next Friday (15th.)

Interestingly, in the month or two since I had the moulds taken for the

new aids I have given up smoking (again) with the result that my

eustachian tubes have started to function a little better and my hearing

has now improved in BOTH ears. So the new aids may spend a

disproportionate amount of their time in their boxes...... Ho hum !

,

Milton Keynes, UK

-----------------------------------------

This email was sent from supanet.com.

http://www.supanet.com/

February 7, 2008

>

> Gav wrote :-

>

> > Hi , i am also in the UK and have just been diagnosed with C-

> > toma, could you please let me know if you had any hearing loss

after

> > the operation or is your hearing back to normal now.

>

> Hi Gav,

>

> Yes I did have some hearing loss after the first operation. This

was

> partly because the C-Toma had been conducting sound for me ( I was

warned

> this might be the case ) and partly because the surgeon temporarily

> removed at least one out of the hearing bones during the operation.

>

> The bone(s) he had removed was carefully filed and was re-inserted

when he

> did the second (reconstruction) operation a year later. The

> reconstruction however was not hugely successful from the hearing

point of

> view, so what had been my better ear became my not-so-good ear.

The

> surgeon has hinted that he thinks he could do better if he had

another

> try, but has never seriously suggested scheduling another

operation - I

> think he's leaving it to me to decide whether I want to push for it.

>

> Having said all this, my hearing has been continuously variable

since I

> was about 4 years old so the overall effect of the hearing loss has

been

> slight. All it has really meant is that I was recommended to move

my

> (analogue) hearing aid from the other ear to the operated ear.

>

> In the six/seven years since my operations, the hearing in

my " good " ear

> has deteriorated somewhat so I have now been prescribed new digital

> hearing aids for both ears, which I am picking up next Friday

(15th.)

> Interestingly, in the month or two since I had the moulds taken for

the

> new aids I have given up smoking (again) with the result that my

> eustachian tubes have started to function a little better and my

hearing

> has now improved in BOTH ears. So the new aids may spend a

> disproportionate amount of their time in their boxes...... Ho

hum !

>

> ,

> Milton Keynes, UK

>

Thanks for your reply Jon,

My story is - i had my first mastoidectomy in my left ear way back in

1980 (10 years old) and it was a bit of a disaster, i'v had trouble

ever since. Then i met a new consultant to my local ENT clinic in

2004. He demanded i needed a further op ASAP as my ear was a bit of a

mess. I was in theatre 5 hrs 20 mins thats how bad it was apparently.

Anyway i must say this doc was fantastic with me. But i had my usual

6 month check up with him last Friday and he wants to operate again

to my left ear just to complete the job really. I'v no probs with

that as i am near on completely deaf in my left ear but he also

examined my right ear and now feels i may need a c-toma op in that

ear. He says its not at all bad but the first signs are there. This

is why i am concerned about hearing loss because i rely heavily on my

right ear.

Thanks

Gav

>

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

> This email was sent from supanet.com.

> http://www.supanet.com/

>

November 5, 2008

Donah,

my daughter just had her surgery on 10/27 and Dr. Chang is our doctor. He is

wonderful. He answers every question you have and took his time with us. If

you have questions, write them down and he will answer them. His staff is very

friendly and courteous. My daughter had her surgery at Memorial Hermann and

other than the 3 hour wait for the delayed surgery (something came up with the

surgery before us) things went very well. It was a 3 hour long surgery and

after it was over he came out and talked to me ad my husband and even gave us

pictures! LOL I highly recommend him. He will have our business as long as he

is on our insurance plan.

Pam

Pamela Waling " smile, it confuses people... "

> From: bennyk2918 <BKLINGSPORN@...>

> Subject: Just diagnosed

> cholesteatoma

> Date: Wednesday, November 5, 2008, 8:53 AM

> Hi my CT scan shows what appears to be a ctoma. Are there

> any specific

> questions I need to be sure to ask at my initial apt? I am

> seeing Dr

> ph Chang. He is the director of The Texas Ear Center

> located in

> the medical complex in Houston. Does anyone have any

> feedback on him

> or this center? I have read that someone on this group

> recommemded

> Baylor, any input??? Thanks, Donah K

November 5, 2008

Thanks for the response Pam I am relieved to know that you liked

him and his staff. Did your daughter get to go home or did she have to

spend the night? I guess it probably depends on the procedure. I am

excited at the prospect of pics LOL!!!

From:

cholesteatoma [mailto:cholesteatoma ] On

Behalf Of Pam Bankston

Sent: Wednesday, November 05, 2008 11:10 AM

cholesteatoma

Subject: Re: Just diagnosed

Donah,

my daughter just had her surgery on 10/27 and Dr. Chang is our doctor. He is

wonderful. He answers every question you have and took his time with us. If you

have questions, write them down and he will answer them. His staff is very

friendly and courteous. My daughter had her surgery at Memorial Hermann and

other than the 3 hour wait for the delayed surgery (something came up with the

surgery before us) things went very well. It was a 3 hour long surgery and

after it was over he came out and talked to me ad my husband and even gave us

pictures! LOL I highly recommend him. He will have our business as long as he

is on our insurance plan.

Pam

Pamela Waling " smile, it confuses people... "

> From: bennyk2918 <BKLINGSPORN@...>

> Subject: Just diagnosed

> cholesteatoma

> Date: Wednesday, November 5, 2008, 8:53 AM

> Hi my CT scan shows what appears to be a ctoma. Are there

> any specific

> questions I need to be sure to ask at my initial apt? I am

> seeing Dr

> ph Chang. He is the director of The Texas Ear Center

> located in

> the medical complex in Houston. Does anyone have any

> feedback on him

> or this center? I have read that someone on this group

> recommemded

> Baylor, any input??? Thanks, Donah K

November 5, 2008

I am an adult and had surgery on Sept. 25, 2008 with Dr. Oghalia out of the Methodist Hospital - however, he does most of his surgerys on children at Texas Childrens Hospital - He is EXCELLENT!!! Dr. Oghalia specializes in the ear only. He is hard to get an appointments with and requires a hearing test (which his office will set that up for you) before he will even see you. Once you do see him he will not do surgery until he has performed several different test and has all his facts together. Dr. Oghalia came highly recommended from many doctors I visited. Feel free to call me with any questions - - 281-538-9992.

From: bennyk2918 <BKLINGSPORN@...>cholesteatoma Sent: Wednesday, November 5, 2008 8:53:28 AMSubject: Just diagnosed

Hi my CT scan shows what appears to be a ctoma. Are there any specific questions I need to be sure to ask at my initial apt? I am seeing Dr ph Chang. He is the director of The Texas Ear Center located in the medical complex in Houston. Does anyone have any feedback on him or this center? I have read that someone on this group recommemded Baylor, any input??? Thanks, Donah K

November 5, 2008

She got to go home, but we were in recovery for over an hour because she threw

up twice. She had a tympanoplasty with mastoidectomy and ended up losing 2 of

her hearing bones in the process. I don't know if he gives everybody pictures,

but I asked for them, so ask before hand and he will give you some. If you have

any questions you can email me personally.

Pam

Pamela Waling " smile, it confuses people... "

>

> > From: bennyk2918 <BKLINGSPORN@...

> <mailto:BKLINGSPORN%40COMCAST.NET> >

> > Subject: Just diagnosed

> > cholesteatoma

> <mailto:cholesteatoma%40>

>

> > Date: Wednesday, November 5, 2008, 8:53 AM

> > Hi my CT scan shows what appears to be a ctoma. Are

> there

> > any specific

> > questions I need to be sure to ask at my initial apt?

> I am

> > seeing Dr

> > ph Chang. He is the director of The Texas Ear

> Center

> > located in

> > the medical complex in Houston. Does anyone have any

> > feedback on him

> > or this center? I have read that someone on this group

> > recommemded

> > Baylor, any input??? Thanks, Donah K

November 9, 2008

Thanks for the information. I have an apt with

Dr. Chang on Thursday and luckily someone else in this group used him and

was happy. I plan on meeting him and based on the outcome of that apt I’ll

see if I think I need another opinion and will try to get in with Dr Oghalia.

I appreciate you sending your number and may be giving you a call after my apt

on Thurs. I too am an adult having this surgery. Before your

surgery did you run a low grade fever on and off? I am still running a slight

temperature even though I am on antibiotics and ear drops. Think I will

call my ENT in the am just to let him know, he is Dr Toung of the Texas ENT

Specialists. I really like him and hope I am happy with his recommendation.

I would just like to get this started and start feeling and hearing better as

soon as possible.

Donah 832-326-7646

Spring/ Champions - 1960 area

From:

cholesteatoma [mailto:cholesteatoma ] On

Behalf Of Captain Definder

Sent: Wednesday, November 05, 2008 1:50 PM

cholesteatoma

Subject: Re: Just diagnosed

I am an adult and had surgery on Sept. 25, 2008 with Dr.

Oghalia out of the Methodist Hospital - however, he does most of his

surgerys on children at Texas Childrens Hospital - He is EXCELLENT!!! Dr.

Oghalia specializes in the ear only. He is hard to get an appointments

with and requires a hearing test (which his office will set that up for

you) before he will even see you. Once you do see him he will not do

surgery until he has performed several different test and has all his facts

together. Dr. Oghalia came highly recommended from many doctors I

visited. Feel free to call me with any questions - -

281-538-9992.

From: bennyk2918 <BKLINGSPORN@...>

cholesteatoma

Sent: Wednesday, November 5, 2008 8:53:28 AM

Subject: Just diagnosed

Hi my CT scan shows what appears to be a ctoma.

Are there any specific

questions I need to be sure to ask at my initial apt? I am seeing Dr

ph Chang. He is the director of The Texas Ear Center located in

the medical complex in Houston. Does anyone have any feedback on him

or this center? I have read that someone on this group recommemded

Baylor, any input??? Thanks, Donah K

November 10, 2008

Donah,

my daughter is the one that uses Dr. Chang. I wanted to comment on the low

grade fever though. Masie actually did run a low grade fever off and on for

well, about 3 months (mainly because everyone including the pediatrician thought

she had a raging ear infection). She was on ciprodex ear drops since August and

still ran a fever. So, it might be normal, but you might have something else

going on along with the c-toma. Keep an eye on it, make sure it doesn't get to

high and take tylenol or motrin to help keep it down. That's one thing we did

with Masie was alternate those 2 to help the fever. Let me tell you, she was a

miserable little girl for quite a while.

I hope your appointment goes well on Thursday. Please email me and let me know

how it went. We were very satisfied with Dr. Chang, so I hope you like him as

well.

Stay in touch,

Pam

Pamela Waling " smile, it confuses people... "

> From: Benny Klingsporn <BKLINGSPORN@...>

> Subject: RE: Just diagnosed

> cholesteatoma

> Date: Sunday, November 9, 2008, 7:35 PM

> Thanks for the information. I have an apt with Dr.

> Chang on Thursday

> and luckily someone else in this group used him and was

> happy. I plan on

> meeting him and based on the outcome of that apt I'll

> see if I think I need

> another opinion and will try to get in with Dr Oghalia. I

> appreciate you

> sending your number and may be giving you a call after my

> apt on Thurs. I

> too am an adult having this surgery. Before your surgery

> did you run a low

> grade fever on and off? I am still running a slight

> temperature even though

> I am on antibiotics and ear drops. Think I will call my

> ENT in the am just

> to let him know, he is Dr Toung of the Texas ENT

> Specialists. I

> really like him and hope I am happy with his

> recommendation. I would just

> like to get this started and start feeling and hearing

> better as soon as

> possible.

>

> Donah 832-326-7646

>

> Spring/ Champions - 1960 area

>

> From: cholesteatoma

> [mailto:cholesteatoma ]

> On Behalf Of Captain Definder

> Sent: Wednesday, November 05, 2008 1:50 PM

> cholesteatoma

> Subject: Re: Just diagnosed

>

> I am an adult and had surgery on Sept. 25, 2008 with Dr.

> Oghalia out of

> the Methodist Hospital - however, he does most of his

> surgerys on children

> at Texas Childrens Hospital - He is EXCELLENT!!! Dr.

> Oghalia specializes in

> the ear only. He is hard to get an appointments with and

> requires a hearing

> test (which his office will set that up for you) before he

> will even see

> you. Once you do see him he will not do surgery until he

> has performed

> several different test and has all his facts together. Dr.

> Oghalia came

> highly recommended from many doctors I visited. Feel free

> to call me with

> any questions - - 281-538-9992.

>

> _____

>

> From: bennyk2918 <BKLINGSPORN@...>

> cholesteatoma

> Sent: Wednesday, November 5, 2008 8:53:28 AM

> Subject: Just diagnosed

>

> Hi my CT scan shows what appears to be a ctoma. Are there

> any specific

> questions I need to be sure to ask at my initial apt? I am

> seeing Dr

> ph Chang. He is the director of The Texas Ear Center

> located in

> the medical complex in Houston. Does anyone have any

> feedback on him

> or this center? I have read that someone on this group

> recommemded

> Baylor, any input??? Thanks, Donah K

March 10, 2009

It does get better my friend......It is a cross to bear, but hopefully, it will

make you count your other blessings ! Just

Diagnosedachalasia > Hello,> For the last 4 yrs I have had

all the symptoms of Achalasia. > Regurgitation, getting food stuck, extreme

chest pain (to the > point I thought I was dying). I went yesterday and had an >

manometry done. The doctor concluded that I do have Achalasia > and that I would

need surgery. I have one more test to have done > and that's a Barium swallow.>

To be honest, I have all these mixed up emotions right now. I > wanted the

diagnosis sooo bad so that I could finally get > something done about this, but

now that I have the diagnosis I'm > mad as hell. I really just want to know if

these feeling I have > will finally subside??....I'm scared of the surgery, and

the > realization of knowing that this will never go away and that I > have to

live with this for the rest of my life....does it get > better or worse?> I

guess I just need some support and my family doesn't know what > to say or do. >

Please help.> Malisa> >

March 10, 2009

Dear Malisa,

Welcome to the Group. If it's support you need, you've made a great step by

coming here. Everything that you describe and feel is normal and you must

realise that before you can move forward. Of course you are angry - Why has this

happened? What was the point of being fit and healthy? It almost feels like a

grieving process, when you feel as if you have lost your normal self. You feel

like a freak. How did you manage to get such a rare disease that nobody else has

heard of? Does any of this sound familiar?

Give yourself the chance to come to terms with the situation, learn a lot about

it, then you can do the best for yourself that is possible.

I used to feel like you years ago. Nowadays: I have gained so many positive

things from achalasia, particularly friendships, and learnt a new degree of

compassion, so much so that I honestly think that it has all been worth it.

There are valuable silver linings to most horrible situations. Give yourself the

time you need and you will be much stronger.

Unless you are very very frail, do not be afraid of the surgery. It was my first

time too and by the time I had listened to some of the great people in this

Group, who answered even the most stupid of questions for me, I was looking

forward to getting it over with so that I could get my life back.

We are here for you.

Love from Ann in England.

From: malprymate35 <malprymate35@...>

Subject: Just Diagnosed

achalasia

Date: Tuesday, 10 March, 2009, 4:45 PM

Hello,

For the last 4 yrs I have had all the symptoms of Achalasia. Regurgitation,

getting food stuck, extreme chest pain (to the point I thought I was dying). I

went yesterday and had an manometry done. The doctor concluded that I do have

Achalasia and that I would need surgery. I have one more test to have done and

that's a Barium swallow.

To be honest, I have all these mixed up emotions right now. I wanted the

diagnosis sooo bad so that I could finally get something done about this, but

now that I have the diagnosis I'm mad as hell. I really just want to know if

these feeling I have will finally subside??... .I'm scared of the surgery, and

the realization of knowing that this will never go away and that I have to live

with this for the rest of my life....does it get better or worse?

I guess I just need some support and my family doesn't know what to say or do.

Please help.

Malisa

March 10, 2009

malisa- my 16 yer old son had a heller myotomy with a dor nissen on feb 11,2009.

one week post op he was back in highschool, eating soft foods, and the

laparoscopic incision lines were healing. today you can barely see the incision

lines, he's eating a variety of foods, he hanging with his friends and being a

normal teenager. he has had about 5 episodes of what is described as esophageal

spasms since his surgery. the majority of these spasms happened during the first

2 weeks of his recovery. for those he drinks ice water and they go away. the

spasms have now almost completely gone. yes, he will have to live with this

condition for the rest of his life. but for him the heller was a god sent. he

is doing and living the life of a normal teenager. it sounds as if you may be

experiencing the stages of grief: denial, anger, bargining, acceptance. research

this board, find the best surgeon if that is what you choose to do and allow us

to be here for you. our lives have returned to normal and the best part of that

is I now have a network of awesome people who give unselfishly of themselves.

welcome. we are here for you...angela

Just Diagnosed

Hello,

For the last 4 yrs I have had all the symptoms of Achalasia. Regurgitation,

getting food stuck, extreme chest pain (to the point I thought I was dying). I

went yesterday and had an manometry done. The doctor concluded that I do have

Achalasia and that I would need surgery. I have one more test to have done and

that's a Barium swallow.

To be honest, I have all these mixed up emotions right now. I wanted the

diagnosis sooo bad so that I could finally get something done about this, but

now that I have the diagnosis I'm mad as hell. I really just want to know if

these feeling I have will finally subside??....I'm scared of the surgery, and

the realization of knowing that this will never go away and that I have to live

with this for the rest of my life....does it get better or worse?

I guess I just need some support and my family doesn't know what to say or do.

Please help.

Malisa

March 10, 2009

Malisa,

I just had my heller myometry and though it wasn't easy, I felt food in my

stomach and my intestines were doing a dance for a while. I was overjoyed. I was

diagnosed (manometry) and then I scheduled my surgery for the following week. I

was pretty worried, I felt like I was making a rash decision but I had lost 40

pounds in 3 months...so my les never opened up. The only things I was able to

eat at the end was bacon and coke. I could not last doing that for very long. I

felt like I had no other options.

I had the surgery 2 weeks ago and I feel so much better because I am getting

nutrition and hydration. I have had spasms but they are sporadic and managable.

I have acid reflux at night so I am on Prilosec and have propped up pillows.

But at least I have kept everything down and had only one episode of nausea.

(from eating too many pureed eggs). I am on my final days of pureed food and

will switch to soft food in a few days after my followup with my surgeon.

Take one step at a time and dont think too far into the future.

Maniko

>

> Hello,

> For the last 4 yrs I have had all the symptoms of Achalasia. Regurgitation,

getting food stuck, extreme chest pain (to the point I thought I was dying). I

went yesterday and had an manometry done. The doctor concluded that I do have

Achalasia and that I would need surgery. I have one more test to have done and

that's a Barium swallow.

> To be honest, I have all these mixed up emotions right now. I wanted the

diagnosis sooo bad so that I could finally get something done about this, but

now that I have the diagnosis I'm mad as hell. I really just want to know if

these feeling I have will finally subside??....I'm scared of the surgery, and

the realization of knowing that this will never go away and that I have to live

with this for the rest of my life....does it get better or worse?

> I guess I just need some support and my family doesn't know what to say or do.

> Please help.

> Malisa

>

March 10, 2009

Hi Malisa,

First off, it is good that you found this site. My achalasia started in

September of 1994 when I was 41. I did not have surgery for a little more than

2 years. I went through all the tests, the throwing up after every couple of

bites, food getting stuck, the whole nine yards. Finally, after about 6 months,

I couldn't even swallow my own saliva. But, they gave me nitro to put under my

tongue, which gives you about a 15 minute time period to eat something. Of

course, you had to guess when that 15 mins. started!

My kids suffered the most because they couldn't understand what was happening.

At any rate, in November, 1996, I finally had a myotomy (they cut the lower

esophageal sphincter open and wrap the stomach to help form a " mock " closer, for

lack of a better word). I had started having the esophageal spasms after the

first endoscopic exam during the testing period. The first one was so insanely

painful, I actually passed out--and I have a very high threshhold of pain.

After the surgery, and an appropriate amount of time on soft foods and a liquid

diet (about two months), I was able to start eating other foods. As long as I

chew my food very well and don't eat quickly, I do well. I still have problems

with apples and rice, of all things!

As for the spasms, I basically had to figure that out for myself. So this is

what I do when I feel one coming on: 1. Drink water...lots of it. I always

have water with me. 2. If that doesn't work right away, I eat unsalted saltine

crackers and drink water. This is the equivalent of walking out a charlie horse

in your leg. 3. Finally, if that doesn't work, I take a 5 mg. (half a tablet)

of Valium. Now, the Valium takes about 45 minutes to work, so don't waste a lot

of time til you have learned how your spasms work. I have become so aware of my

spasms and their slight differences, that I can pretty much tell when the Valium

needs to be taken as the onset of an episode. I don't waste time with the rest

of it.

I will say this, however. Occasionally, (last night was a good example), I get

some really nasty episodes. No amount of water or crackers will work and I end

up throwing up simply from pain, even though there is nothing in my stomach.

Last night's started at 10 pm and lasted til about 2:30 a.m. I ended up taking

2 full (10 mg.) tablets of Valium and a half one over the course of that time.

I sleep sitting up either in a recliner or with pillows against the side of the

sofa and just laying sideways. Those only come now about three to four times a

year. I get the spasms frequently, but if I do the first two steps immediately

(above), I am usually okay.

Admittedly, it puts a bit of a cramp in your style. Your life seems to evolve

around the potential of having these spasms. For instance, I must always make

certain I am sitting at the end of a row at the theater or a concert, in case I

have to get out of there fast (to the bathroom) and I sit toward the back.

Travel can get tricky, but I was in Africa two years ago on a mission trip and

did just fine. I am going to Nicaragua in August. You can't let it rule your

life, but you have to be ready. Always have water, always have crackers, always

have valium. That's what I do.

Now I did see that someone on this site says she takes some other medication for

spasms and that it works immediately. The nitro doesn't do anything for me but

give me a nasty headache. But she takes something else. I hope she reads this

because I would like to know if that medication if specifically for the spasms

and what the side effects are. I also take Prilosec (2 at a time) every day

because the Nexium is too expensive.

They can now do the myotomy laparascopically, which they couldn't do when I had

the surgery. They went in through my left side, through my rib cage. But I did

really well with it. They were surprised. I was out of the hospital in 4 days.

But I have a very optimistic outlook and trust the Lord and He's been good and

sustained me when I shouldn't have been doing as well as I did.

Now it's outpatient, though. Even better. You will notice a huge difference.

I had the dilitation and the Botox. Didn't work for me. My espophagus still

doesn't work and I drink water with meals to help the food go down. Just take

small bites, chew well and you will do find. For some reason, I can't eat

things with vanilla in them, like ice cream or vanilla flavoring in my coffee. I

instantly get a spasm. Can't figure that out, though. You learn what to stay

away from and don't eat after 7 p.m. Try to eat right away in the morning to

get something in your stomach so what acid is there is absorbed.

You'll do great! The surgery is like a miracle! Like I said, the spasms are

the worst. So if you are reading this (the person who named the medication she

is taking for her spasms), please let us know. I'll have my doc give me a

script for it and try it.

God's best to you, Malisa. I know how hard it is for your family, but they are

as confused as you are. Try to be optimistic and take each day as it comes. A

lot of it is that they feel guilty that they can eat with such ease and you are

suffering. Like I said, the surgery will fix all that.

>

> Hello,

> For the last 4 yrs I have had all the symptoms of Achalasia. Regurgitation,

getting food stuck, extreme chest pain (to the point I thought I was dying). I

went yesterday and had an manometry done. The doctor concluded that I do have

Achalasia and that I would need surgery. I have one more test to have done and

that's a Barium swallow.

> To be honest, I have all these mixed up emotions right now. I wanted the

diagnosis sooo bad so that I could finally get something done about this, but

now that I have the diagnosis I'm mad as hell. I really just want to know if

these feeling I have will finally subside??....I'm scared of the surgery, and

the realization of knowing that this will never go away and that I have to live

with this for the rest of my life....does it get better or worse?

> I guess I just need some support and my family doesn't know what to say or do.

> Please help.

> Malisa

>

March 11, 2009

Malissa, there is an article on the group site, written by one of our

members which should help you understand that you are having the same problems

as

others with achalasia. This article would be good to print out for your

family and friends. It is in the files section, titled " Achalasia Family.Doc. "

For convenience, I am copying it here.

Life does get better.

Maggie

Alabama

Learning to Cope with a Loved Oneâ€™s Achalasia

Outlined below are support suggestions from sufferers of Achalasia. Those

quoted are from all stages of the disease and have had a variety of treatment

options. Please read the information below and even print it out to discuss

with your friend or family member who is suffering with this disease. A

frank discussion can help both of you manage the illness more effectively.

While reading the information below, please keep in mind that Achalasia will

affect the patient for the rest of their life. It is not only chronic, but

it is a degenerative illness. Therefore, surgery and other treatments are

not cures, but rather â€œstop-gap measuresâ€ to help the patient have a better

quality of life.

Most sufferers will agree that one of the greatest aids to their quality of

life is having friends and family members who are sensitive to the changes

that have happened in their life as a result of Achalasia (A).

Things to do or say

Listening to the A. patient's explanation & BELIEVING it & trying to

understand it (we find it unbelievable that we cannot drink, too!).

Maybe offer a massage coupon or something like that if I haven't tried it

before. Stress reduction will help the painful esophageal spasms I have to

deal with.

If we used to meet for lunch, invite me about the same time to do something

else so our friendship stays the same. If I decline, come to my house and

spend time with me anyway because I'm starting to withdraw. Call me more on

the phone instead of sharing meals if I'm avoiding you.

Be available to drive me to appointments or tests if I can't drive myself

home, sometimes we avoid the second opinion because we don't want to ask others

for a ride. Offer and offer again... we can go to the tests alone, but may

need to be dropped off and picked up.

Compliment us on how nice we look, losing weight for most is the only good

thing. When we gain weight back after treatment, tell us we are looking

healthier.

Bring us cookies and don't tell us how bad it is for our diet, it is often

the only food that goes down. Find out what foods work for us. If drinking

Hershey's syrup is the only thing that goes down, don't give us the evil eye

or wonder about if we are taking vitamins (heck no those really hurt). Invite

us for Thanksgiving and give us a glass of Hershey's syrup. We don't care

about vitamins, necessarily. We want to do something and enjoy something

while the rest eat.

Be patient while we eat slowly.

At a restaurant, donâ€™t gawk when we down a pitcher of water with our meal

and have to run to the bathroom several times.

When we go out to eat, in addition to ordering your regular coke order a

glass of water too so I will have an extra glass of liquid in case the server

does not keep my glass filled.

Suggest a place to dine that has a variety of foods not just a fast foods

place where youâ€™re limited to a sandwich or a salad, both of which can be

problem foods for those with A.

Also, when eating in public, help assure we are near a bathroom. Sometimes

the motility of our esophagus decides to workâ€¦..in reverse.

Do listen when we need to talk about our concerns, and be compassionate when

were not feeling good. We know you donâ€™t have the answers. We may just

need to vent.

Laugh together, but not at our predicament. We already feel a bit freakish.

Above all that though is Prayer. That is the biggest unseen support we can

get.

What NOT to do or say

Please donâ€™t say " I thought you couldn't eat that " when the person with A is

having a " good " day & managing something other than liquids.

Offering unsolicited advice (for example, insisting there is a problem as a

result of drinking soda, etcâ€¦).

Please do NOT tell me about Slim-Fast, Ensure, any diet drink and ask if

blending food works. A affects swallowing both liquids and solids. We have

probably tried everything.

Do NOT tell me your natural product is better and give me samples. Do not

try to sell me magnets, bracelets or any other latest gimmick, unless I've

bought them before. Even modern medicine is still trying to figure out this

extremely rare disease!

Donâ€™t pretend you know what its like to have the stuck feeling, and how to

get rid of it. Ours is different.

Donâ€™t pat me on the back while I am having trouble swallowingâ€“ Iâ€™m not

choking. I would rather not talk (or might not be able to) when I am having

troubleâ€¦.Iâ€™m probably trying to concentrate on getting it down or figuring

the

best route to the bathroom to get it back up.

Don't let the first thing out of your mouth be â€œAunt Susie didn't swallow

well and she had this terrible heartburn. But she got better with the right

medication and I am sure yours will be fine too.â€ Rest assured, even trained

doctors have probably confused our problem with the very common GERD mentioned

here. Achalasia is quite different.

Donâ€™t be upset when I canâ€™t tell you what I can and cannot eat at times.

Sometimes I don't even know myself. Believe me when I tell you this is a

weird disease with no rhyme or reason.

Particularly for spouses or those closest to the patient:

NO! It is NOT getting better, and it isn't going to get better unless I

take a break from you and the kids and get treatment....

Please read a little on your ownâ€¦.type the following words into Google so

that you know the basics.

Achalasia

Dysphagia

Heller Myotomy

Manometry

When you find something that might help me send the link to me.

Go with me to the doctor, especially when I need to go to the surgeon.

Let me know Iâ€™m loved unconditionallyâ€¦you have flaws, too!

**************A Good Credit Score is 700 or Above. See yours in just 2 easy

steps!

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March 11, 2009

You will get through this. I did. In fact I am one of those alumni here who

get the myotomy w/ the dor fundiplication, help out here for awhile with the

newbies then wander away. I decided to check back in and see whats up, so kudos

to all those old timers who haven't stopped participating, especially my buddy

Ann H & Notan to mention just a few.

I had the surgery in April 2005 but had to have several dilations with the first

year and a half but things have been good since then. I do still have chest

pains but usually at night and are easily controlled with water.

We have to remember though, the surgery does not fix the esophagus, it only

gives the food someplace to go. So, I eat very slow and drink and 2 – 3 pints

of water per meal. I have to be careful of what I eat, bread and doughy things

tend to stick, but do wash down.

Research, research; understand your body and this disease and you WILL get

through this

>

> Hello,

> I guess I just need some support and my family doesn't know what to say or do.

> Please help.

> Malisa

>

March 12, 2009

Hi Malisa ~~

I echo the sentiments of , whose process down the achalasia path was very

similar to mine. It's very good that you found this site, which has been a

godsend for me over the years!

I became symptomatic back in 1998, misdiagnosed for 2 years with little sleep,

lots of pain, 35 pounds of weight loss, and pretty serious depression, and

finally received the correct diagnosis at the end of 2000. My surgery was here

in Portland (Maine) laparoascopically in March of 2001, resulting in immediate

relief. The " anger " that you're referring to was also present for me, but

seemed to magically ease when I was able to finally swallow liquids and most

other things easily.

I have also had periods of problems with spasms, though for me they sort of come

and go, with sometimes months between the events. Ice water and crackers do the

trick for me as well, but I also use Nifedipine (a smooth muscle relaxer also

knows as Procardia) which is effective 99% of the time.

As for " better or worse " , I honestly don't think I'd be here today without

having had the surgery, so that would definitely be a " better " from my

perspective!! It can be a hassle, I'm always the last to finish a meal, but I

don't have to worry too much about keeping weight off and just have to remind

myself, " little bites, little bites, chew, chew " and always (always) have a

bottle of water nearby.

I wish you all of the best!

perry -- 8 years post myotomy

> >

> > Hello,

> > For the last 4 yrs I have had all the symptoms of Achalasia. Regurgitation,

getting food stuck, extreme chest pain (to the point I thought I was dying). I

went yesterday and had an manometry done. The doctor concluded that I do have

Achalasia and that I would need surgery. I have one more test to have done and

that's a Barium swallow.

> > To be honest, I have all these mixed up emotions right now. I wanted the

diagnosis sooo bad so that I could finally get something done about this, but

now that I have the diagnosis I'm mad as hell. I really just want to know if

these feeling I have will finally subside??....I'm scared of the surgery, and

the realization of knowing that this will never go away and that I have to live

with this for the rest of my life....does it get better or worse?

> > I guess I just need some support and my family doesn't know what to say or

do.

> > Please help.

> > Malisa

> >

>

March 13, 2009

Hi

Reading your post has just reminded me exactly of how I was feeling two years

ago when I finally got dignosed (it took so long!!). I just thought I'd write

the feeling does go away I promise and after the treatment- if you're anything

like me, you'll probably just go a bit mad for a while and eat all that's going

and be elated at feeling healthy.

It's been almost two years since my dialitisation and even though most people

see me as 'normal' now (I even have to watch my weight!) the symptoms do

persist, though mildly (but of course, each case is different). I'm waiting

until it's bad enough for me to have further treatement because at the moment

I'm just enjoying getting on with life. It was the not knowing that was the bad

thing at my worst. The doctors told me it was all in my head originally, which

made me more depressed and confused than necessary.

Knowing what I have really helps when I do get flare ups/chest pains/regurgitate

as I feel alot more in control and so the symptoms are bareable. I hope you have

a good doctor, too. Mine have been supportive and I get regular check-ups.

I hope this helps, and good luck...

Gwennan

From: malprymate35 <malprymate35@...>

Subject: Just Diagnosed

achalasia

Date: Tuesday, 10 March, 2009, 4:45 PM

Hello,

For the last 4 yrs I have had all the symptoms of Achalasia. Regurgitation,

getting food stuck, extreme chest pain (to the point I thought I was dying). I

went yesterday and had an manometry done. The doctor concluded that I do have

Achalasia and that I would need surgery. I have one more test to have done and

that's a Barium swallow.

To be honest, I have all these mixed up emotions right now. I wanted the

diagnosis sooo bad so that I could finally get something done about this, but

now that I have the diagnosis I'm mad as hell. I really just want to know if

these feeling I have will finally subside??....I'm scared of the surgery, and

the realization of knowing that this will never go away and that I have to live

with this for the rest of my life....does it get better or worse?

I guess I just need some support and my family doesn't know what to say or do.

Please help.

Malisa

------------------------------------

March 13, 2009

,

Are you from Portland, ME? I live just up the road near Augusta. You said you

had your surgery in Portland? Who did you see for a gastro and for a surgeon?

I was just diagnosed with " A " but have had problems swallowing since childhood.

I can still swallow most thing with the help of water, but I need to find a good

gastro doctor to consult with about what to do. I would like the surgery

eventually, but I'm trying to figure out what to do in the next year or so until

I have it.

Thanks!

> > >

> > > Hello,

> > > For the last 4 yrs I have had all the symptoms of Achalasia.

Regurgitation, getting food stuck, extreme chest pain (to the point I thought I

was dying). I went yesterday and had an manometry done. The doctor concluded

that I do have Achalasia and that I would need surgery. I have one more test to

have done and that's a Barium swallow.

> > > To be honest, I have all these mixed up emotions right now. I wanted the

diagnosis sooo bad so that I could finally get something done about this, but

now that I have the diagnosis I'm mad as hell. I really just want to know if

these feeling I have will finally subside??....I'm scared of the surgery, and

the realization of knowing that this will never go away and that I have to live

with this for the rest of my life....does it get better or worse?

> > > I guess I just need some support and my family doesn't know what to say or

do.

> > > Please help.

> > > Malisa

> > >

> >

>

May 31, 2009

,

Sorry to hear about your bad news. I was diagnosed 2 years ago approximately.

After the birth of my second son dec 1st, 2007. When the baby was 3 months old I

started Interferon/rebetrol treatments. Wow talk about hell, post-partum blues

and this crap. Anyway I took the treatment for 8 months and my counts (RNA) only

dropped 2 million. So needless to say I was unresponsive to treatment. I have

genotype 1a/b. Which really sucks. After the treatment was done I had another

liver ultrasound. It was normal- go figure. The enzymes still elevated but I

feel pretty darn good now. I get tired and occasionally have anger outbursts. I

think just the whole process made me nuts. But I am still kicking and I am

sober. I am also a nurse and I really really dont believe much in conventional

tx anymore lol. I follow and herbalist now. Take things that have antiviral

properties that I think might help. I get mad mostly because I am sure there is

better treatment in other countries for this problem yet our wonderful

pharmacuetic " cartel " has made this interferon very very expensive. hence

someone is getting rich off our illness. Most insurance companies will not even

pay for it. I am sorry if I sound very negative cause really I feel I am lucky.

I started using iv drugs at age 34 stopped into it about a year cause I had

nothing left. Now I am trying to live life on lifes terms and care for my

children I had after I was 36. and I have the baby that has downs syndrome so I

am busy with them most of the time just trying to make the best of a bad

situation. At least I am not on the streets trying to sell my shoes for a fix or

like others waiting to get a transfusion. So with that I feel blessed and try to

look at it that way. I am not totally convinced it was iv drugs anyway. I had

some crazy surgeries and blood transfusions also and my doctors tell me you must

of used when you were a teenager because you have chronic hepatitis. I did not

use anything as a teen but smokes a couple of joints a few times. The coke thing

started after 18 years of nursing, 2 abusive husbands and just stuff. But I am

back on track now and not " tracts " lol. God bless all and try to keep it

simple and dont freak to hard about it cause life is to short for all that

stress. I pray for all to slay the dragon!!!

JUST DIAGNOSED

WOULD IT BE POSSIBLE FOR ME TO TALK TO SOMEONE WHO HAS HAD TREATMENTS. i JUST

FOUND OUT YESTERDAY. ANY RESPONSE WOULD BE GREATLY APPRECIATED. THANKS

May 31, 2009