New to Group - Background on my Achalasia

[Guest guest]

Hi everyone. It's great to find a place where others share their achalasia

stories and experiences. I'm 32 years old and from Northern, VA. I was just

recently diagnosed two months ago with Achalasia. Symptoms started over 2 years

ago, every couple of weeks I would have problems swallowing liquid and had a

very hard time making myself burp. Symptoms progressed and were more frequent, I

started having problems with liquids and solids. I would get strong chest pains

when I would eat. I first went to the doctor in September 2010. Had a barium

swallow in Oct 2010 - showed slight dysphagia. Doctor thouht it was reflux and

prescribed Prilosec. Had a endoscopy in Nov 2010, no signs of GERD, or

allergies. Doc suggested I try continuing to push the food down. Went back in

January 2011. Had a 24hr ph study conducted - results were normal. April 2011 -

second barium swallow - this time showing a very dilated upper esphogaus. I

joked with the nurse that finally a test was showing something. Because I'm

starting to think this is all in my head. Doc got the results and said it looked

like I had classic achalasia. Had a manometry later the same month - results

confirmed achalasia.

My symptoms from February to April definitely worsened. I started regurgitating

much more frequently and went from 160 to 140lbs. Weirdly though in late May

things seemed to feel better, probably the best in 6 months. But then just the

last week it's been the worst it's been. I can get barely anything down at all

liquid or solid.

Right now I'm scheduled for a Heller Myotomy at UVA later this month. The GI at

UVA said somebody at my age would probably do better with surgery long term

versus dilation. I was excited initially but then get a little nervous the more

I read. Even though it seems the Heller Myotomy is probably a good way to go.

I'm going read through this message board, it looks like there is a lot of

information. Any comments/suggestions are appreciated. Does anybody have

experience with UVA and Dr. Kozower specifically?

Glad to be part of the group!

Joe

[Guest guest]

I am so glad you finally got it diagnosed. Lots of info on this board with alot

of helpful advice. I am sure others will chime in with info about you situation.

From: Joe <joe3rd2002@...>

Subject: New to Group - Background on my Achalasia

achalasia

Date: Tuesday, June 7, 2011, 10:59 PM

 

Hi everyone. It's great to find a place where others share their achalasia

stories and experiences. I'm 32 years old and from Northern, VA. I was just

recently diagnosed two months ago with Achalasia. Symptoms started over 2 years

ago, every couple of weeks I would have problems swallowing liquid and had a

very hard time making myself burp. Symptoms progressed and were more frequent, I

started having problems with liquids and solids. I would get strong chest pains

when I would eat. I first went to the doctor in September 2010. Had a barium

swallow in Oct 2010 - showed slight dysphagia. Doctor thouht it was reflux and

prescribed Prilosec. Had a endoscopy in Nov 2010, no signs of GERD, or

allergies. Doc suggested I try continuing to push the food down. Went back in

January 2011. Had a 24hr ph study conducted - results were normal. April 2011 -

second barium swallow - this time showing a very dilated upper esphogaus. I

joked with the nurse that

finally a test was showing something. Because I'm starting to think this is all

in my head. Doc got the results and said it looked like I had classic achalasia.

Had a manometry later the same month - results confirmed achalasia.

My symptoms from February to April definitely worsened. I started regurgitating

much more frequently and went from 160 to 140lbs. Weirdly though in late May

things seemed to feel better, probably the best in 6 months. But then just the

last week it's been the worst it's been. I can get barely anything down at all

liquid or solid.

Right now I'm scheduled for a Heller Myotomy at UVA later this month. The GI at

UVA said somebody at my age would probably do better with surgery long term

versus dilation. I was excited initially but then get a little nervous the more

I read. Even though it seems the Heller Myotomy is probably a good way to go.

I'm going read through this message board, it looks like there is a lot of

information. Any comments/suggestions are appreciated. Does anybody have

experience with UVA and Dr. Kozower specifically?

Glad to be part of the group!

Joe

[Guest guest]

Welcome to this very informative, helpful support group. As you will read

repetitively, make sure you get the Best of the Best doctors to treat your

condition. Only the best will be good enough. I wish I had found this group

before my HM. I think surgery is helpful. Do your research and drive wherever

needed so you can have the Best doctor available.

Barb

[Guest guest]

Hi Joe,

It is great that you found this support group.  My son 16 years old has

achlasia and whenever I meet any doctors I always tell them about how much this

group has helped me through my confusion and when  looking for tips to help my

son. I let the doctors know too so they can let other newly diagnosed people

know about it. 

I wish you the best and hoping and praying some day soon medical science will

have answers and complete cure for this disease.

Regards,

Priti from New Jersey

From: Joe <joe3rd2002@...>

Subject: New to Group - Background on my Achalasia

achalasia

Date: Tuesday, June 7, 2011, 8:59 PM

 

Hi everyone. It's great to find a place where others share their achalasia

stories and experiences. I'm 32 years old and from Northern, VA. I was just

recently diagnosed two months ago with Achalasia. Symptoms started over 2 years

ago, every couple of weeks I would have problems swallowing liquid and had a

very hard time making myself burp. Symptoms progressed and were more frequent, I

started having problems with liquids and solids. I would get strong chest pains

when I would eat. I first went to the doctor in September 2010. Had a barium

swallow in Oct 2010 - showed slight dysphagia. Doctor thouht it was reflux and

prescribed Prilosec. Had a endoscopy in Nov 2010, no signs of GERD, or

allergies. Doc suggested I try continuing to push the food down. Went back in

January 2011. Had a 24hr ph study conducted - results were normal. April 2011 -

second barium swallow - this time showing a very dilated upper esphogaus. I

joked with the nurse that

finally a test was showing something. Because I'm starting to think this is all

in my head. Doc got the results and said it looked like I had classic achalasia.

Had a manometry later the same month - results confirmed achalasia.

My symptoms from February to April definitely worsened. I started regurgitating

much more frequently and went from 160 to 140lbs. Weirdly though in late May

things seemed to feel better, probably the best in 6 months. But then just the

last week it's been the worst it's been. I can get barely anything down at all

liquid or solid.

Right now I'm scheduled for a Heller Myotomy at UVA later this month. The GI at

UVA said somebody at my age would probably do better with surgery long term

versus dilation. I was excited initially but then get a little nervous the more

I read. Even though it seems the Heller Myotomy is probably a good way to go.

I'm going read through this message board, it looks like there is a lot of

information. Any comments/suggestions are appreciated. Does anybody have

experience with UVA and Dr. Kozower specifically?

Glad to be part of the group!

Joe

[Guest guest]

Hi Joe

You should go back about 2 years and make notes of what happened to various

people. You are so young, dont get talked into something before you really know

the facts. Achalasia is no fun at your age, I believe some cure will come, you

might hold off for awhile.

Try to clean out the e every night with a 16 oz bottle of water and maybe an

Ensure plus. Eat by 6 pm and have some activity in the evening like walking,

running or maybe gardining.

My classic achalasia started at 75 age as GERD in the middle of the night. I

found this group and decided I would wait. They wanted to send me to USC Dr

Demeester in LA,

After a lot of internet study and with notans comments I found out what would

work for me. I have had no operations or dilations.

Searth out CO2, coke, butter and Magnesium and sleep on an inclined bed.

Ray CA OC 80

>

> Hi everyone. It's great to find a place where others share their achalasia

stories and experiences. I'm 32 years old and from Northern, VA. I was just

recently diagnosed two months ago with Achalasia. Symptoms started over 2 years

ago, every couple of weeks I would have problems swallowing liquid and had a

very hard time making myself burp. Symptoms progressed and were more frequent, I

started having problems with liquids and solids. I would get strong chest pains

when I would eat. I first went to the doctor in September 2010. Had a barium

swallow in Oct 2010 - showed slight dysphagia. Doctor thouht it was reflux and

prescribed Prilosec. Had a endoscopy in Nov 2010, no signs of GERD, or

allergies. Doc suggested I try continuing to push the food down. Went back in

January 2011. Had a 24hr ph study conducted - results were normal. April 2011 -

second barium swallow - this time showing a very dilated upper esphogaus. I

joked with the nurse that finally a test was showing something. Because I'm

starting to think this is all in my head. Doc got the results and said it looked

like I had classic achalasia. Had a manometry later the same month - results

confirmed achalasia.

> My symptoms from February to April definitely worsened. I started

regurgitating much more frequently and went from 160 to 140lbs. Weirdly though

in late May things seemed to feel better, probably the best in 6 months. But

then just the last week it's been the worst it's been. I can get barely anything

down at all liquid or solid.

> Right now I'm scheduled for a Heller Myotomy at UVA later this month. The GI

at UVA said somebody at my age would probably do better with surgery long term

versus dilation. I was excited initially but then get a little nervous the more

I read. Even though it seems the Heller Myotomy is probably a good way to go.

> I'm going read through this message board, it looks like there is a lot of

information. Any comments/suggestions are appreciated. Does anybody have

experience with UVA and Dr. Kozower specifically?

> Glad to be part of the group!

> Joe

>

[Guest guest]

Thanks Ray for the comments.

Part of the reason I joined this group was because I started having second

thoughts about surgery and wanted more information. From what I've read many

people have had good success with myos but not all, plus once it's done there is

no going back. I may hold off longer and try some other options. A couple people

have mentioned magnesium. Lately my diet has had a lot of oatmeal, bananas,

water and nutrition shakes.

March and April seemed to be bad months for me with a good amount of weight

loss. Then in the middle of May things seemed to strangely feel better. I didn't

get the same pain when swallowing, food just seemed to go down easier. Last week

though was bad with burning in my chest, throat and ears. Virtually nothing

would go down for a few days. I thought it may be esophagitis or maybe bad

heartburn I don't know. But I went back to a soft bland diet with lots of water.

I also went back on Dexilant. Things seem to be getting a little better.

I'm down to 137 lbs, about 25lbs less than Febraury.

One of my concerns other than weight loss, is could I be doing damage or

dilating my esophagus without even knowing it? I use to have really bad chest

pain when eating. That pain seemed to go away but the regurgitation became more

and more. Not sure why that would be?

Sleeping elevated has really helped with choking/gagging in the middle of the

night. Also, I've been trying not to eat at least 4 hours before bed.

Thanks again for the comments!

Joe

Warrenton, VA 32

> >

> > Hi everyone. It's great to find a place where others share their achalasia

stories and experiences. I'm 32 years old and from Northern, VA. I was just

recently diagnosed two months ago with Achalasia. Symptoms started over 2 years

ago, every couple of weeks I would have problems swallowing liquid and had a

very hard time making myself burp. Symptoms progressed and were more frequent, I

started having problems with liquids and solids. I would get strong chest pains

when I would eat. I first went to the doctor in September 2010. Had a barium

swallow in Oct 2010 - showed slight dysphagia. Doctor thouht it was reflux and

prescribed Prilosec. Had a endoscopy in Nov 2010, no signs of GERD, or

allergies. Doc suggested I try continuing to push the food down. Went back in

January 2011. Had a 24hr ph study conducted - results were normal. April 2011 -

second barium swallow - this time showing a very dilated upper esphogaus. I

joked with the nurse that finally a test was showing something. Because I'm

starting to think this is all in my head. Doc got the results and said it looked

like I had classic achalasia. Had a manometry later the same month - results

confirmed achalasia.

> > My symptoms from February to April definitely worsened. I started

regurgitating much more frequently and went from 160 to 140lbs. Weirdly though

in late May things seemed to feel better, probably the best in 6 months. But

then just the last week it's been the worst it's been. I can get barely anything

down at all liquid or solid.

> > Right now I'm scheduled for a Heller Myotomy at UVA later this month. The GI

at UVA said somebody at my age would probably do better with surgery long term

versus dilation. I was excited initially but then get a little nervous the more

I read. Even though it seems the Heller Myotomy is probably a good way to go.

> > I'm going read through this message board, it looks like there is a lot of

information. Any comments/suggestions are appreciated. Does anybody have

experience with UVA and Dr. Kozower specifically?

> > Glad to be part of the group!

> > Joe

> >

>

[Guest guest]

Hi Joe,

I've had achalasia for many years and went untreated for most of that time

period.  I did not know until I found this group about options to get help. 

One

thing that I did notice was that at times I had better weeks and days, then it

would get worse again.  The whole thing has a life of its own. The variations

of

distress change from day to day.  I would try and ignore it on my better days,

then it would get so BAD that I would feel hopeless about ever eating normally

again. Last summer with the help of this group, I decided that regurging my food

every freaken day was driving me nuts, so I began looking into getting help

armed with all the education I could find. 

I researched and found a top notch surgeon and had a real face to face with

her.  She immediately calmed my fears and told me that a myotomy would work in

my situation. I really feared surgery, but I could not go on the way I was

living.  The surgery was not the huge horrible thing that I expected, they are

mostly done lapro and recovery is a couple of weeks time, not bad at all. 

Guess

what? I can eat now and life has changed in amazing ways.  The key is to have

them look over your tests and give you a real face to face talk.  I wanted to

know " how " they did their Hellers Myotomy, how far did they cut, what kind of

fundoplacation did they use and why.  I wanted to know if I would have acid

reflux for the rest of my life from this surgery.  For me, I have had no

problems whatsoever so far with any reflux, no spasms anymore either since about

a month after surgery.  I did not want to do balloon dilations because of the

scar tissue it could cause, which " could " make surgery in the future more

difficult ( may or maynot).  I choose to go for it.  You have to make those

decisions for yourself along with your surgeon.  Do your research and ask lots

of questions.  There is help out there, the torture of living with a swallowing

disorder that is so rare is really a bummer for us!  Find out what condition

your esophagus is in, see if you are a good candidate for either procedure and

which would likely give you the best results. 

I wanted a surgeon who was passionate about achalasia, one that studied under

the best of the best and knew how to do a successful myotomy on many patients. 

The learning curve seems to be at least 75 of these surgeries under their belt

or more.  That was my standard rule. 

Keep us posted.  Glad you joined our group.

Julee So. Calif.

________________________________

From: Joe <joe3rd2002@...>

achalasia

Sent: Thu, June 9, 2011 7:13:42 PM

Subject: Re: New to Group - Background on my Achalasia

 

Thanks Ray for the comments.

Part of the reason I joined this group was because I started having second

thoughts about surgery and wanted more information. From what I've read many

people have had good success with myos but not all, plus once it's done there is

no going back. I may hold off longer and try some other options. A couple people

have mentioned magnesium. Lately my diet has had a lot of oatmeal, bananas,

water and nutrition shakes.

March and April seemed to be bad months for me with a good amount of weight

loss. Then in the middle of May things seemed to strangely feel better. I didn't

get the same pain when swallowing, food just seemed to go down easier. Last week

though was bad with burning in my chest, throat and ears. Virtually nothing

would go down for a few days. I thought it may be esophagitis or maybe bad

heartburn I don't know. But I went back to a soft bland diet with lots of water.

I also went back on Dexilant. Things seem to be getting a little better.

I'm down to 137 lbs, about 25lbs less than Febraury.

One of my concerns other than weight loss, is could I be doing damage or

dilating my esophagus without even knowing it? I use to have really bad chest

pain when eating. That pain seemed to go away but the regurgitation became more

and more. Not sure why that would be?

Sleeping elevated has really helped with choking/gagging in the middle of the

night. Also, I've been trying not to eat at least 4 hours before bed.

Thanks again for the comments!

Joe

Warrenton, VA 32

> >

> > Hi everyone. It's great to find a place where others share their achalasia

>stories and experiences. I'm 32 years old and from Northern, VA. I was just

>recently diagnosed two months ago with Achalasia. Symptoms started over 2 years

>ago, every couple of weeks I would have problems swallowing liquid and had a

>very hard time making myself burp. Symptoms progressed and were more frequent,

I

>started having problems with liquids and solids. I would get strong chest pains

>when I would eat. I first went to the doctor in September 2010. Had a barium

>swallow in Oct 2010 - showed slight dysphagia. Doctor thouht it was reflux and

>prescribed Prilosec. Had a endoscopy in Nov 2010, no signs of GERD, or

>allergies. Doc suggested I try continuing to push the food down. Went back in

>January 2011. Had a 24hr ph study conducted - results were normal. April 2011 -

>second barium swallow - this time showing a very dilated upper esphogaus. I

>joked with the nurse that finally a test was showing something. Because I'm

>starting to think this is all in my head. Doc got the results and said it

looked

>like I had classic achalasia. Had a manometry later the same month - results

>confirmed achalasia.

>

> > My symptoms from February to April definitely worsened. I started

>regurgitating much more frequently and went from 160 to 140lbs. Weirdly though

>in late May things seemed to feel better, probably the best in 6 months. But

>then just the last week it's been the worst it's been. I can get barely

anything

>down at all liquid or solid.

> > Right now I'm scheduled for a Heller Myotomy at UVA later this month. The GI

>at UVA said somebody at my age would probably do better with surgery long term

>versus dilation. I was excited initially but then get a little nervous the more

>I read. Even though it seems the Heller Myotomy is probably a good way to go.

>

> > I'm going read through this message board, it looks like there is a lot of

>information. Any comments/suggestions are appreciated. Does anybody have

>experience with UVA and Dr. Kozower specifically?

>

> > Glad to be part of the group!

> > Joe

> >

>