Hello

[Guest guest]

<< She insisted that I absolutely not use progesterone cream. It is her

belief that it causes breast and ovarian cancer. >>

Huh? Never heard of this, but it is her opinion and she is entitled to it.

I do not agree with it, as it saved me from many things, including fibroid

surgery.

Judi

" There are two means of refuge from the miseries of life: music and

ats. " - Albert Schweitzer

[Guest guest]

<< She insisted that I absolutely not use progesterone cream. It is her

belief that it causes breast and ovarian cancer. >>

Huh? Never heard of this, but it is her opinion and she is entitled to it.

I do not agree with it, as it saved me from many things, including fibroid

surgery.

Judi

" There are two means of refuge from the miseries of life: music and

ats. " - Albert Schweitzer

[Guest guest]

Hi Debby - I'm Debbi from Michigan (and we've also got a Debbie from New Jersey here, too!)

I'm 35yo, I've had achalasia symptoms since about 1992-93 and was finally diagnosed in 1996. I've had a few dilations and a botox, and I'm just waiting for it to progress to the point that I can have surgery (wish I'd had the surgery in the first place, but that's water under the bridge.)

I'm sorry that your son is still having problems, even after having the Heller Myotomy. If you don't mind my asking, where do you live? We may be able to recommend a doctor with experience who could help.

I'm going to assume that your son's problems are associated with dysphagia, although you didn't mention what type of problems he's having. One thing that has been discussed is that some surgeons (particularly those who aren't as experience with this particular surgery) don't cut far enough in both directions to completely sever the LES muscle. Most common is not cutting far enough into the stomach, although it can also happen if they don't cut far enough up the esophagus. Another factor is the extent to which the body of the esophagus has stretched out... if it's really "poofy", then food will settle there rather than continuing on to the stomach. Yet another factor (but not as common as incomplete myotomy or stretched-out esophagus) is the presence of diverticulum, little "pockets" that hold food.

If your son is having problems with chest pains, there's been info posted twice today about things to try to alleviate that.

Hope this helps!Debbi in Michigan

I'm new to . My son is 23 and has achalasia, he was diagnosed his sr. year of school. He's still having trouble after numerous dilatations and a hellers cardiomyotomy. How old are you all and what stage are you at with achalasia? I'm just looking for treatments, advice etc to help my son.Thanks.Debby

[Guest guest]

Welcome, Georgia Debby! This affliction seems to gravitate towards Debbies! lol!

What a shame about your son. How old is he? My recommendation is that you make sure you find a doctor who has dealt with Achalasia a LOT. Chaitanya lives in Georgia & will hopefully chime in here to help you out finding someone nearby. Best wishes - Cindi in PA

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Cindi wrote:

> Chaitanya lives in Georgia & will hopefully chime in here to help

>you out finding someone nearby.

Sorry for the delay in answering. Was " out of the office " yesterday.

Went for pre-op medical screening.

Debby (debbylus)

My doctors are in-house Kaiser Permanente. So I don't know if that

is of much help. If you are able to use the info, I can send it to

you.

He has already had dilations in ATL?. Does that mean he will be

seeing the same GI's who did the dialations?

Sorry to hear you two are going through so much. Hang in there, we

will all be thinking and praying about you :-)

Chaitanya Rupa

[Guest guest]

Hi Debbi from Michigan. I live in Atlanta, I'm fromMichigan too. Where are you?

Hi Debby -- I've been in the greater Kalamazoo area since the late 80's, and I grew up in Battle Creek.

My son had five dilatations and the heller's at St. Joe in Ann Arbor, MI.

I've never heard of anyone in A2 going anywhere other than UMMC.... I used to go to Dr. Nostrant at UMMC until 2002; I got tired of the lies and out-dated/inaccurate information, and so now I drive to Cleveland to see the specialists there (who actually know what they're talking about.)

We are now in ATL and he's had 2 dilatations in one year. We're waiting for the referral to go back to the GI doc. He still has trouble with food getting stuck. He has to drink a lot of water with every meal.

Well, with no peristaltic function, he's ALWAYS going to need to drink a lot of water with each meal to "push" the food through with gravity's help. Even a perfect myotomy won't change that, except in the rare case of someone who has not lost peristaltic contractions.

Does his problem seem to be "everything" (even liquids) getting stuck, or just certain foods?

Is he having problems with waking up choking on his saliva at night?

Does he end up regurgitating at each and every meal, or does it always end up going through if he pushes it with water after it gets stuck?

Has he had a timed barium swallow performed recently? (Swallow barium, wait 60 seconds, take picture; wait 120 more seconds, take picture; wait 120 more seconds, take picture. Compare volume of barium retained in esophagus at 1 min, 3 min, and 5 min to determine if the LES is opening right away, after a few minutes, or not at all.)

Was he helped AT ALL by the myotomy? Did it work "like a charm" for a couple of years and then gradually get worse again, or was he still having "stuckages" [love that term, !] like he's having now, even immediately after the myotomy? (If his myotomy was successful at first but got worse over time, one thing to check on is stricture due to acid reflux damage; if his myotomy was NOT successful right from the beginning, I would suspect an incomplete myotomy, not cut down or up far enough.)

Was the body of his esophagus terribly stretched-out by the time he had his myotomy? Has it stretched out even further since then?

Do his "stuckages" seem to happen in the middle or upper part of his esophagus, or does stuff seem to be going down until it gets to that "all built up in a pile at the end of the road" point?

It's so hard for me as a mother to see him struggle with achalasia.

As a mother myself, I know exactly what you mean!

I don't know what else can be done. Does anyone have any suggestions? Or advice or tips that they have done.

My suggestion would be to find an EXPERIENCED specialist, even if you have to travel. (The Cleveland Clinic has a campus in Florida that you might want to Inquire about.) I would also try to determine exactly which type of problem he's having right now, whether it's LES not opening, acid-caused stricture, or peristalsis-induced.

Everyone also seems to have "good foods" and "bad foods" -- when I was in my "really bad off" stage, things that worked best for me were warm, dense foods (warmth seemed to relax/soothe the LES, and density was needed b/c I needed foods that would "sink" to the LES on their own -- lighter foods would "float" in the saliva in my esophagus, which would then agitate the nerves, which would then send me scrambling for the nearest hurling receptacle!) Things that worked best for me then were creamy soups (with any chunks removed), runny oatmeal, cream of wheat, and grits. If he's not eating a balanced diet, it's important that he take nutritional supplements. There are chewable calcium supplements, and two Flintstones (or similar) chewable vitamins are the same as one adult multivitamin.

My new doctor (primary healthcare provider) just told me about the "world's best mixer", too --- they are horrendously expensive ($400-$500 for a new one), but they totally pulverize everything. It's called Vita-Mix ( http://www.vitamix.com/household/ ) and according to this doctor, they are amazing machines. He tells patients to get rid of their juicers and use these machines instead, b/c they completely smoosh up the ENTIRE fruit/vegetable into juice or a smoothie (whichever you prefer). Juicers squeeze out the water and sugar and then you throw away the pulp, which has all the fiber in it -- these machines pulverize the pulp, so you're getting the beneficial fiber (something very hard to get down for those with dysphagia ..... fruits, veggies, and grains are pretty much a guaranteed "hurl" for us!) He said that he takes the stem off an apple and the Vita-Mix will completely grind up even the seeds and it's not gritty or anything. (My doctor doesn't sell these blenders, and he doesn't get a commission or anything -- he just really swears by these machines! I've only just seen them on the website and not used one myself, so I make no claims whatsoever -- but from what I see on their website, they seem like awesome little machines!)

Debbi in Michigan

[Guest guest]

Penny ! Nice to hear form you but sorry you are not feeling so happy. I do know how you feel - it will probably be OK on the day but meanwhile you eat yourself up worrying about it.

If you ask to get a doctor in Toronto you could always say you want another opinion and so not burn your boats with the other one.

Hugs

Joan

HELLO

WELL STILL NO NEWS FROM THE SURGEON IN LONDON I KEEP CALLING HIS OFFICE BUT AM ALWAYS TOLD THEY ARE VERY BUSY AND WILL BE CALLED WHEN A APPOINTMENT IS MADE . I AM THINKING OF CALLING TO FIND A DOCTOR IN TORONTO THIS IS CRAZY I AM SLEEPING BETTER BECAUSE OF THE BED BUT HAVE NOT BEEN FEELING ALL THAT GREAT EMOTIONALLY MY HUSBAND HAS PLANNED A PARTY FOR OUR NINTH WEDDING ANNIVERSARY AND ALL I CAN THINK OF IS OH NO I CAN'T GO OUT AND EAT IN PUBLIC BECAUSE I KNOW I WILL END UP IN THE WASHROOM .MOST OF MY FRIENDS KNOW ABOUT MY CONDITION BUT I AM STILL VERY UNCOMFORTABLE EATING IN PUBLIC . I HAVE BEEN HAVING ALOT OF THE NCP BUT I AM SURE IT IS STRESS RELATED. WELL ENOUGH ABOUT ME HOPE EVERYONE ELSE IS DOING OK HAS THERE BEEN ANYMORE NEWS ON JAN I HOPE SHE IS DOING BETTER .AND BIANKA IT IS NICE TO SEE YOU BACK HERE WITH US EVERY SO OFTEN WE MISSED THE HUGS EVERYONE TAKE CARE AND REMEMBER TO SMILE PENNY

[Guest guest]

Hi Penny,

I don't know much about your situation but I take it you are talking

about southern Ontario. I live there too (Cambridge) and don't know

how far afield you are searching but if you would like a personal

referral I can tell you that I had surgery 2 years ago in Hamilton

with Dr. Anvari at St. ph's who is a very good surgeon (not

much on personality so be warned). I did not have the myotomy

although I know he does them. He felt something else was more

appropriate in my case. Anyway, I know how long it takes to get

referrals processed but if your situation is an emergency who

knows. At that time I got in to see him within about a month

(referred by my gastroenterologist) and he booked surgery for 2

weeks later which was quite a shock.

Good luck to you

Liz

> WELL STILL NO NEWS FROM THE SURGEON IN LONDON I KEEP CALLING HIS

> OFFICE BUT AM ALWAYS TOLD THEY ARE VERY BUSY AND WILL BE CALLED

WHEN

> A APPOINTMENT IS MADE . I AM THINKING OF CALLING TO FIND A DOCTOR

IN

> TORONTO THIS IS CRAZY I AM SLEEPING BETTER BECAUSE OF THE BED BUT

> HAVE NOT BEEN FEELING ALL THAT GREAT EMOTIONALLY MY HUSBAND HAS

> PLANNED A PARTY FOR OUR NINTH WEDDING ANNIVERSARY AND ALL I CAN

> THINK OF IS OH NO I CAN'T GO OUT AND EAT IN PUBLIC BECAUSE I KNOW

I

> WILL END UP IN THE WASHROOM .MOST OF MY FRIENDS KNOW ABOUT MY

> CONDITION BUT I AM STILL VERY UNCOMFORTABLE EATING IN PUBLIC . I

> HAVE BEEN HAVING ALOT OF THE NCP BUT I AM SURE IT IS STRESS

RELATED.

> WELL ENOUGH ABOUT ME HOPE EVERYONE ELSE IS DOING OK HAS THERE BEEN

> ANYMORE NEWS ON JAN I HOPE SHE IS DOING BETTER .AND BIANKA IT IS

> NICE TO SEE YOU BACK HERE WITH US EVERY SO OFTEN WE MISSED THE

HUGS

> EVERYONE TAKE CARE AND REMEMBER TO SMILE PENNY

[Guest guest]

Hey , welcome to the group. Sounds like you're on a fast pace to

recovery. I wish you the best! By the way, how long did it take you

to sdrawkcab eman rouy etirw ot nrael?

Mike (or is it ekiM?)

(i miss you, i miss you so far

and the collision of your kiss that made it so hard...)

>

> I thought I would introduce myself. My name is and have been

> watching this site for a month or two so far. I'm an early 40's

> average male, just lucky I guess. I have been diagnosed with A and

> have opted for the hellers myotomy which is scheduled for April 26th

> in San Francisco. A couple questions for this well educated and

> informed group. Has anyone dealt with " Laproscopic Associates " in

San

> Francisco, Dr. Jossart, or the California Pacific Medical Center?

Any

> and all advice is welcome.

> in Eureka

[Guest guest]

I don't know this group in specific -- but my son had outstanding care at

CMPC for a liver transplant. My bet is that you are in good hands. Welcome

to the group.

>

> I thought I would introduce myself. My name is and have been

> watching this site for a month or two so far. I'm an early 40's

> average male, just lucky I guess. I have been diagnosed with A and

> have opted for the hellers myotomy which is scheduled for April 26th

> in San Francisco. A couple questions for this well educated and

> informed group. Has anyone dealt with " Laproscopic Associates " in San

> Francisco, Dr. Jossart, or the California Pacific Medical Center? Any

> and all advice is welcome.

> in Eureka

[Guest guest]

Hi ,

Welcome to the group! Good luck with your surgery on the 26th. We will be

thinking of you.

Joan

Johannesburg

South Africa

Hello

>

>

> I thought I would introduce myself. My name is and have been

> watching this site for a month or two so far. I'm an early 40's

> average male, just lucky I guess. I have been diagnosed with A and

> have opted for the hellers myotomy which is scheduled for April 26th

> in San Francisco. A couple questions for this well educated and

> informed group. Has anyone dealt with " Laproscopic Associates " in San

> Francisco, Dr. Jossart, or the California Pacific Medical Center? Any

> and all advice is welcome.

> in Eureka

>

>

>

>

>

>

>

>

[Guest guest]

Hi Sonet:

Welcome to our little family -- sorry you have achalasia, but I know my own

relief when I finally knew -- on Christmas eve of this last year -- that my

problems were not in my head, not GERD, but achalasia. To further my relief,

I found this group, that has been a source of great support to me through the

past 8 months.

I am scheduled for surgery on August 8 at Cedars-Sinai in Los Angeles. I am

having a Video Assisted Thorascopic heller myotomy with no wrap. I opted to

wait for treatment until I got to a specialty center that knows about achalasia

after getting bad advice and poor respect from community doctors. If you can,

go to Mayo or Cleveland Clinic, whatever is near to you.

In our database section, there is a list of hospitals most reknowned for

treatment of achalasia -- Mayo is right up at the top.

You will be going through alot of feelings, knowing the progressive nature of

this disorder and hopefully you will get lots of support here. Feel free to ask

all the questions you want.

Isn't it great to read about your life from the posts of others? When I first

started to read -- I thought -- these people really understand what I am living

with!

Welcome

Peggy

> My name is Sonet, I am 28 and I live in Northeast Nebraska. I have

> been having issues that were diagnosed as GERD for about 2 years. They

> have diagnosed me with achalasia in the last month. I have yet to see

> a GI doctor (aug. 4) and I am really nervous. Last friday they did an

> endoscopy and I find out those results on Wed. A general surgeon did

> my endoscopy as well as a dilation, which did not subside any of the

> symptoms. I have difficulty eating and drinking almost all of the time

> now. I seem to live on slim fast shakes as the consistancy has been

> easy for me to swallow almost regularly. Water seems to be the hardest

> to swallow and carbonated beverages have the most foaming effects. I

> always feel as if I have a lump in my throat, and I have a hard time

> reducing my annoying effects of this disease. I am truely greatful to

> have found this group I have learned a lot from reading past emails.

> If anyone else is around the area and knows a good doctor, let me

> know. The one I am scheduled with is Dr. Gutnik (nice last name for

> the profession) and he only diagnoses and does dilations. They told me

> I would probably have to go to the Mayo clinic for a myotomy, if that

> is what I require. Thanks for letting me vent. Sonet

[Guest guest]

dear Sonet. I wss about your age when first diagnosed. Was

misdiagnosed and mistreated for quite a while. Here you will find the

right information and great support. We know what you are going

through. Hang in there.

> My name is Sonet, I am 28 and I live in Northeast Nebraska. I have

> been having issues that were diagnosed as GERD for about 2 years.

They

> have diagnosed me with achalasia in the last month. I have yet to

see

> a GI doctor (aug. 4) and I am really nervous. Last friday they did

an

> endoscopy and I find out those results on Wed. A general surgeon

did

> my endoscopy as well as a dilation, which did not subside any of

the

> symptoms. I have difficulty eating and drinking almost all of the

time

> now. I seem to live on slim fast shakes as the consistancy has been

> easy for me to swallow almost regularly. Water seems to be the

hardest

> to swallow and carbonated beverages have the most foaming effects.

I

> always feel as if I have a lump in my throat, and I have a hard

time

> reducing my annoying effects of this disease. I am truely greatful

to

> have found this group I have learned a lot from reading past

emails.

> If anyone else is around the area and knows a good doctor, let me

> know. The one I am scheduled with is Dr. Gutnik (nice last name for

> the profession) and he only diagnoses and does dilations. They told

me

> I would probably have to go to the Mayo clinic for a myotomy, if

that

> is what I require. Thanks for letting me vent. Sonet

[Guest guest]

Sonet,

Hello and welcome to the group! I'm sorry to hear that you have

achalasia, but I know this group will give you lots of information to

help you out. I'm so surprised that you have not seen a GI doctor

yet. How did your doctor diagnose your achalasia? Typically, they

use a barium swallow and manometry along with the endoscopy to make

the diagnosis. Even GI doctors don't always know too much about the

disease. Our GI doctor has said that my husband is his toughest case

and has had a hard time reaching a diagnosis. My husband was, like

you, misdiagnosed as having GERD at first. He was treated for that

for about a year and a half, without success, of course. We'll be

traveling to The Cleveland Clinic Aug. 2nd to hopefully get a better

diagnosis and maybe some relief for him. My husband says he can

relate to your reference to the foaming of carbonated beverages. He

also has trouble swallowing water when he's having a bad day (usually

a couple of times/week). He's been drinking a lot of Boost

(nutritional drink, like Ensure) in the last few weeks because it goes

down easily, like Slim Fast does for you. How far is Mayo Clinic from

you? I don't know for sure, but they probably have a great GI

department there. Good luck at your Aug. 4th appointment! Please

keep us posted on your condition and feel free to vent whenever you

want! Many people on this site can relate to how you're feeling!

in Michigan

(wife of , with possible achalasia)

[Guest guest]

Hi Sonet,

What a gorgeous name. Haven't ever heard it before. Took my husband

and I a week to name our daughter, had I heard the name sonet I would

have used it. We ended up with Laureen, which we like anyway. We

aren't so musical so she may not be musical, so maybe we are better

with Laureen.

Anyway, welcome to our group. I grew up in SE Montana, so I relate

to the possible lack of medical alternatives you might have. Isn't

there a teaching hospital in Nebraska, I'm not sure.

The reason for the question is because you REALLY need to find an

experienced doctor. If you dialation didn't really help, then you

should move on to the best doctor/hospital you can find that has

experience with achalasia. We all repeat this all the time.

If you can, find absolutely the best doctor you can physically and

financially afford.

Call them, you are a rare commodity and if you mention achalasia I

would bet that over 80% to 95% will call you within a day or so.

They will all be happy to see you and " work " on you so be careful to

pick only the best you can find.

We have a doctor database on the achalasia group home page... (Nag

nag, old members, please put your doctors' names and hospitals in the

database, if you don't know how, email one of us and we'll do it.)

Then again here is my favorite website for research... be careful of

the dates of the articles. I think there are thousands on achalasia.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search & DB=pubmed

There, that is my introductory greeting and nag. I'm guessing

Cleveland Clinic is kind of within driving distance or Mayo, I'm not

remembering anyone mentioning having treatment in Nebraska but could

be wrong.

Welcome.

Sandy in Long Beach CA

> > My name is Sonet, I am 28 and I live in Northeast Nebraska. I

have

> > been having issues that were diagnosed as GERD for about 2 years.

They

> > have diagnosed me with achalasia in the last month. I have yet to

see

> > a GI doctor (aug. 4) and I am really nervous. Last friday they

did an

> > endoscopy and I find out those results on Wed. A general surgeon

did

> > my endoscopy as well as a dilation, which did not subside any of

the

> > symptoms. I have difficulty eating and drinking almost all of the

time

> > now. I seem to live on slim fast shakes as the consistancy has

been

> > easy for me to swallow almost regularly. Water seems to be the

hardest

> > to swallow and carbonated beverages have the most foaming

effects. I

> > always feel as if I have a lump in my throat, and I have a hard

time

> > reducing my annoying effects of this disease. I am truely

greatful to

> > have found this group I have learned a lot from reading past

emails.

> > If anyone else is around the area and knows a good doctor, let me

> > know. The one I am scheduled with is Dr. Gutnik (nice last name

for

> > the profession) and he only diagnoses and does dilations. They

told me

> > I would probably have to go to the Mayo clinic for a myotomy, if

that

> > is what I require. Thanks for letting me vent. Sonet

[Guest guest]

Sonet, welcome to the group. There is a page on the site that has a list of doctors. You could start looking at that to see if there are any near you. We are glad to have found us and we are here to support you. I am sorry you are having so much trouble eating and drinking right now. Start making a list of questions so that you can take them to your appointments when they come. If you need to vent or just chat that is fine. We all understand what you are going through.

in Suffolk

[Guest guest]

I had an upper gi and an endoscopy with a general surgeon. There is

only one gastroenterologist in Norfolk and he is not very highly

respected. So I made an appointment in Yankton South Dakota and the

soonest they could get me in was 6 weeks. So I have just been

waiting. Even he does not do the surgery, he only confirms the

diagnosis, so I am sure there will be a third Doctor involved.

Thanks for your reply Sonet---

In achalasia , " let45ride " <brendacoyle@c...> wrote:

> Sonet,

> Hello and welcome to the group! I'm sorry to hear that you

have

> achalasia, but I know this group will give you lots of information

to

> help you out. I'm so surprised that you have not seen a GI doctor

> yet. How did your doctor diagnose your achalasia? Typically, they

> use a barium swallow and manometry along with the endoscopy to make

> the diagnosis. Even GI doctors don't always know too much about

the

> disease. Our GI doctor has said that my husband is his toughest

case

> and has had a hard time reaching a diagnosis. My husband was, like

> you, misdiagnosed as having GERD at first. He was treated for that

> for about a year and a half, without success, of course. We'll be

> traveling to The Cleveland Clinic Aug. 2nd to hopefully get a

better

> diagnosis and maybe some relief for him. My husband says he can

> relate to your reference to the foaming of carbonated beverages.

He

> also has trouble swallowing water when he's having a bad day

(usually

> a couple of times/week). He's been drinking a lot of Boost

> (nutritional drink, like Ensure) in the last few weeks because it

goes

> down easily, like Slim Fast does for you. How far is Mayo Clinic

from

> you? I don't know for sure, but they probably have a great GI

> department there. Good luck at your Aug. 4th appointment! Please

> keep us posted on your condition and feel free to vent whenever you

> want! Many people on this site can relate to how you're feeling!

>

> in Michigan

> (wife of , with possible achalasia)

[Guest guest]

Hi Sonet and welcome to the family. I am sorry you have

achalasia but am glad you found us and seem to be moving

towards getting something done.

You said a general surgeon done your dilatation but it didn't

help. There is more than one kind and I am wondering if he,

using a bougie (flexible) dilator and just stretched your esophagus

or if he used a balloon dilator where they go in and place the

dilator into the LES, the little trap door that opens to let your

food go into the stomach and actually rupture the muscle.

This is the type of dilatation which is usually done for achalasia.

I was at a point before my dilatation that I couldn't keep

down water either. I also understand your problem with

carbonated drinks, but some in this group drink the carbonated

drinks to help them get the food through. As we often say,

we all the same, yet we are all different.

We never give up reading and studying to learn all we can

about this disease, so keep reading and get the best doctors

you can get before you have any procedure done.

Maggie

Alabama

[Guest guest]

Hi Sonet!

Welcome to the group! It sounds like you are on your way to feeling better. The

most important thing you can do right now is make sure you get experienced docs

and GI’s. If you will be going to the Mayo Clinic, you will no doubt be

well taken care of. Keep reading the past posts and you will learn so much.

We all have. If you still have questions, ask away!

Hugs,

in BC

[Guest guest]

Hello Sonet,

Welcome to the group, but sorry to hear you are "one of us", not that it is bad to be "one of us", actually I am very proud to be an Achalasian! We are a unique!

You sound like me oh so many years ago. I was at my worst when I couldn't even get water down, then one day I was drinking some tea and WHOOSH! Everything went down the drain!

I was also diagnosed with Gerd for about the first 2 years...then my doctor got frustrated and decided to call it dyspepsia because he really had no clue. It was then (back around 1998) that I went to the library and started reading the Gastroenterology Journal of Diseases and gave myself a diagosis as many of us in the group have done due to frustration with our own doctors. I went to a new doctor and told him I had Achalasia, and well, at least he knew what it was, but he laughed and said it was highly unlikely but sent me to have an upper GI just in case. About an hour later and only a few drinks of barium, I had a pretty definitive diagnosis for Achalasia...my doctor was very surprised! The xrays showed a very narrow bird's beak esophogus and only a faint trickle was going down.

Well at that point I was doing fairly well getting food down by drinking tea and jumping up and down to get the food to go down, but I finally decided to see a GI doc. I had been putting it off because I was afraid to have the endoscopy, but it turns out that the endoscopy was a breeze!

I had my surgery, a 2002 Heller myotomy w/dor fundoplication in Concord, CA by Horacio Asbun. I am having problems again due to scar tissue and and not because of an unsuccessful surgery. I have an appointment on August 4th to see Dr. Ostroff at UCSF to have a series of dilatations to get me opened up again which is quite normal after having surgery...kind of like maintenence I guess.

Good luck with seeing Dr. Gutnik on the 4th. I am guessing that if they sent you to the Mayo it would be in Rochester, MN??? That would be closest to you, but as you have already heard, The Cleveland Clinic is also very good.

Welcome again to the group, you will find the most wonderful people here and probably make some wonderful new friends who know and understand just what you are going through!

Sandi in No CA

-------------- Original message -------------- > My name is Sonet, I am 28 and I live in Northeast Nebraska. I have > been having issues that were diagnosed as GERD for about 2 years. They > have diagnosed me with achalasia in the last month. I have yet to see > a GI doctor (aug. 4) and I am really nervous. Last friday they did an > endoscopy and I find out those results on Wed. A general surgeon did > my endoscopy as well as a dilation, which did not subside any of the > symptoms. I have difficulty eating and drinking almost all of the time > now. I seem to live on slim fast shakes as the consistancy has been > easy for me to swallow almost regularly. Water seems to be the hardest > to swallow and carbonated beverages have the most foaming effects. I > always feel as if I have a lump in my throat, and I have a hard time > reducing my annoying effects of this disease. I am truely greatful to > have found this group I have learned a lot from reading past emails. > If anyone else is around the area and knows a good doctor, let me > know. The one I am scheduled with is Dr. Gutnik (nice last name for > the profession) and he only diagnoses and does dilations. They told me > I would probably have to go to the Mayo clinic for a myotomy, if that > is what I require. Thanks for letting me vent. Sonet > > > > > > > >

[Guest guest]

, I am sorry that I have not responded to your email. Thanks for

the welcome. I have been busy with a summer class, doctors, and

reading on this weird disease. I just wanted you to know I appreciated

the welcome, hope all is well. Sonet

> Sonet, welcome to the group. There is a page on the site that has

a list of

> doctors. You could start looking at that to see if there are any

near you.

> We are glad to have found us and we are here to support you. I am

sorry you

> are having so much trouble eating and drinking right now. Start

making a

> list of questions so that you can take them to your appointments

when they

> come. If you need to vent or just chat that is fine. We all

understand what you

> are going through.

>

> in Suffolk

[Guest guest]

Thank you for the information. I am sorry it has taken so long to

respond. I appreciate your willingness to help and give advise. Sonet

> Hi Sonet and welcome to the family. I am sorry you have

> achalasia but am glad you found us and seem to be moving

> towards getting something done.

>

> You said a general surgeon done your dilatation but it didn't

> help. There is more than one kind and I am wondering if he,

> using a bougie (flexible) dilator and just stretched your

esophagus

> or if he used a balloon dilator where they go in and place the

> dilator into the LES, the little trap door that opens to let your

> food go into the stomach and actually rupture the muscle.

> This is the type of dilatation which is usually done for

achalasia.

>

> I was at a point before my dilatation that I couldn't keep

> down water either. I also understand your problem with

> carbonated drinks, but some in this group drink the carbonated

> drinks to help them get the food through. As we often say,

> we all the same, yet we are all different.

>

> We never give up reading and studying to learn all we can

> about this disease, so keep reading and get the best doctors

> you can get before you have any procedure done.

>

> Maggie

> Alabama

[Guest guest]

i hope that your surgery has rid some of your problems. I pray that

everything went well. I am sorry I did not write sooner, I have been

selfishly (word?) busy researching and doctoring. I am going to have

a lap hellers and fundoplication on September 8 at the University of

Creighton in Omaha. The doctors are wonderful and I am looking

forward to it. Again I hope all is well, and wishing you a speedy

recovery. Sonet

> > My name is Sonet, I am 28 and I live in Northeast Nebraska. I

have

> > been having issues that were diagnosed as GERD for about 2

years. They

> > have diagnosed me with achalasia in the last month. I have yet

to see

> > a GI doctor (aug. 4) and I am really nervous. Last friday they

did an

> > endoscopy and I find out those results on Wed. A general surgeon

did

> > my endoscopy as well as a dilation, which did not subside any of

the

> > symptoms. I have difficulty eating and drinking almost all of

the time

> > now. I seem to live on slim fast shakes as the consistancy has

been

> > easy for me to swallow almost regularly. Water seems to be the

hardest

> > to swallow and carbonated beverages have the most foaming

effects. I

> > always feel as if I have a lump in my throat, and I have a hard

time

> > reducing my annoying effects of this disease. I am truely

greatful to

> > have found this group I have learned a lot from reading past

emails.

> > If anyone else is around the area and knows a good doctor, let

me

> > know. The one I am scheduled with is Dr. Gutnik (nice last name

for

> > the profession) and he only diagnoses and does dilations. They

told me

> > I would probably have to go to the Mayo clinic for a myotomy, if

that

> > is what I require. Thanks for letting me vent. Sonet

[Guest guest]

Welcome Mauro,I had a dilatation in 2002. It lasted about 8 months before the symptoms came back and I had a VATS myotomy May 2004. IN GENERAL, most doctors experienced with achalasia recommend surgery first. A few years ago a dilatation was probably more recommended as a first step. Botox is seldom recommended unless there are concerns about having surgery. Each individual has unique situations however.The MOST important decision is the doctor you use. Please give us your location, check the doctor database (Has everyone put their doctors' names in there?) and I have a favorite website that gives summaries of almost all medical articles and you can search your heart away. Be aware of the dates of the articles as treatment recommendations do modify over time. That website is: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search & DB=pubmedMost of us also feel that treatment is more successful earlier than later before the esophagus damages and stretches. Good luck and let us know more.Sandy in So Cal.>> I have had achalasia for about two years now, i havent done anything > but just two gastroscophy and barium swallow so far. > I started two months ago reflexology sessions every two weeks (very > painful for my feet). I'm taking 1000mg/day magnesium aspartate > togheter with 10mg/day B12 vitamin that both should relax muscles.> The treatment seems to start working(?), now i can eat at least the > usual "mushy" food every day (98% of the times). Before this mix of > vits and reflexology i had been going without food or drinks sometimes > for three days in a row. (lost 50lb in two years) > I don know if any other has any experience on this or other non > surgical treatments that solved at least partially the problem. > I am planning for a balloon dilation and i would like to know from > someone that has done it if is very painfull and how for how long the > positive results were observed. (if any)> > Thanks> > Mauro>

[Guest guest]

Mauro,

The dilation is not very bad at all. The discomfort is minimal. If

you look back a bit you will also get more info on other people

dilations. For me I got 2 months releif. It was great while I had it

and put on some weigh. For many other people they get much more time

out of it and find it really successful.

It is good to try it and see how you go. If it soes not work the

surgery will help. A will not go away.

I have just had surgery and an a new person.

Good luck

>

> I have had achalasia for about two years now, i havent done

anything

> but just two gastroscophy and barium swallow so far.

> I started two months ago reflexology sessions every two weeks (very

> painful for my feet). I'm taking 1000mg/day magnesium aspartate

> togheter with 10mg/day B12 vitamin that both should relax muscles.

> The treatment seems to start working(?), now i can eat at least the

> usual " mushy " food every day (98% of the times). Before this mix of

> vits and reflexology i had been going without food or drinks

sometimes

> for three days in a row. (lost 50lb in two years)

> I don know if any other has any experience on this or other non

> surgical treatments that solved at least partially the problem.

> I am planning for a balloon dilation and i would like to know from

> someone that has done it if is very painfull and how for how long

the

> positive results were observed. (if any)

>

> Thanks

>

> Mauro

>