Re: I'm not sure what my options are any more..

[Guest guest]

Hi Derron- Welcome to the board.

Yes you do sound as if you need to find a good specialist.It could

be your operation was done wrong,it could be too tight if you had a

wrap, it could be many things.

My son at age 12 had the operation and it was too tight leaving him

worse than before surgery.He underwent another and is now doing

awesome sevreal years later.Eats anything and everything and spasms

have nearly gone away compared to how they use to be.

My sons DR was Dr Rice at the Cleveland Clinic.He is a well known

specialist in achalasia.He will save your esophagus if it can be

saved!Several of us here have used him,and many others here have

used other well know specialist.Someone can get you with the closet

DR. You may just need to have another myomtomy and or have that one

loosened.I would suggest first getting with a specialist, then

getting some updated test done.Barrium swallow,scope,manometry.This

will help to see whats going on.Let me know if I can help give you

his info or help at all.

Hang in there-Tonia in Virginia

>

> Hi everyone. My name is Derron I'm 32 and live in Mass. I was

> diagnosed with the disease when I was 15. It progressed pretty

> quickly. I have had 3 balloon dilitations. None of them helped in

in

> any way. My Dr. Advised me to have a Myotomy. I did, again, I

showed

> no improvement. About 1 year later, it was recomended that I see a

> renowned specialist on the procedure. I forget his name but I went

to

> Mt. Sinai in NY and went to see him for a 2nd Myotomy at age 21.

> Again, I showed no improvement. That was the last medical

procedure

> that I have had. I gave up hope and decided to live with it. Which

is

> pretty miserable. Recently, I have noticed the condition to be

> getting worse. I need almost two bottles of water to eat a meal

and

> sometimes wake up in the middle of the night with severe pain in

my

> chest. I have read that it is what's caled a " Symptomatic Diffuse

> Esophageal Spasm " . The only way I can get the pain to go away to

> drink alot of water. Seems there are alot of well informed people

in

> here. I'm able to maintain my weight and I'm in good shape. The

only

> medication I take it Nexium for reflux. I went to meet with a Dr.

> Coen a few years ago in Boston and he told me that my option was

two

> have my esophoguas taken out and moved up to my stomach. At age 27

I

> didn't think that was in my best interest. Now that my wife and I

> have just had a son, I have promised to look into further

treatment.

> IF anyone has any advice for me it would be much appreciated.

Thanks

> in advance for the help.

>

[Guest guest]

---

Thank you very much for the response. Does anyone know a good

specialist in the Boston area?

In achalasia , " toniasdogsandi " <toniasdogsandi@...>

wrote:

>

> Hi Derron- Welcome to the board.

> Yes you do sound as if you need to find a good specialist.It could

> be your operation was done wrong,it could be too tight if you had a

> wrap, it could be many things.

> My son at age 12 had the operation and it was too tight leaving him

> worse than before surgery.He underwent another and is now doing

> awesome sevreal years later.Eats anything and everything and spasms

> have nearly gone away compared to how they use to be.

> My sons DR was Dr Rice at the Cleveland Clinic.He is a well known

> specialist in achalasia.He will save your esophagus if it can be

> saved!Several of us here have used him,and many others here have

> used other well know specialist.Someone can get you with the closet

> DR. You may just need to have another myomtomy and or have that one

> loosened.I would suggest first getting with a specialist, then

> getting some updated test done.Barrium swallow,scope,manometry.This

> will help to see whats going on.Let me know if I can help give you

> his info or help at all.

> Hang in there-Tonia in Virginia

>

>

>

>

> >

> > Hi everyone. My name is Derron I'm 32 and live in Mass. I was

> > diagnosed with the disease when I was 15. It progressed pretty

> > quickly. I have had 3 balloon dilitations. None of them helped in

> in

> > any way. My Dr. Advised me to have a Myotomy. I did, again, I

> showed

> > no improvement. About 1 year later, it was recomended that I see

a

> > renowned specialist on the procedure. I forget his name but I

went

> to

> > Mt. Sinai in NY and went to see him for a 2nd Myotomy at age 21.

> > Again, I showed no improvement. That was the last medical

> procedure

> > that I have had. I gave up hope and decided to live with it.

Which

> is

> > pretty miserable. Recently, I have noticed the condition to be

> > getting worse. I need almost two bottles of water to eat a meal

> and

> > sometimes wake up in the middle of the night with severe pain in

> my

> > chest. I have read that it is what's caled a " Symptomatic Diffuse

> > Esophageal Spasm " . The only way I can get the pain to go away to

> > drink alot of water. Seems there are alot of well informed people

> in

> > here. I'm able to maintain my weight and I'm in good shape. The

> only

> > medication I take it Nexium for reflux. I went to meet with a Dr.

> > Coen a few years ago in Boston and he told me that my option was

> two

> > have my esophoguas taken out and moved up to my stomach. At age

27

> I

> > didn't think that was in my best interest. Now that my wife and I

> > have just had a son, I have promised to look into further

> treatment.

> > IF anyone has any advice for me it would be much appreciated.

> Thanks

> > in advance for the help.

> >

>

[Guest guest]

Dear Derron,

Amazing what a new life in the family can do as far as motivating parents to take care of themselves so they will be around to see their children grow. Congratulations! Once you narrow down the surgeons you see keep asking them to critique each other in a professional way. What do they do similarily, what do they do differently, what would other surgeons say about the way they do things (I'm not familiar w/ the different ways of doing a removal, but ask what they are). What are the general critiques of their methods from their peers and back and forth. What are controversial differences in approaches among the differences and why do they take their position.

That way you should find a surgeon that knows all the techniques and can handle anything odd that happens during surgery and could convert to a different method.

Personally I don't think it is up to us to decide which method is best because there is no way we can know, but you want a surgeon that is financially and physically feasible for you that is the best choice for your situation and knows the most about all techniques and makes an informed decision. You might consider looking at cancer surgeons, thoracic surgeons, not just the regular myotomy surgeons even though they are thoracic surgeons, as you have apparently moved past the myotomy stage.

As we have noticed lately here... ask what their mrsa rate is. Didn't Notan say they will brag if it is good, and be vague if it is high. Not that any of these questions makes a huge difference in your choice, but you will sort through the surgeons by their responses and those with real skill should be able to explain.

Best wishes.

Sandy

>> Hi everyone. My name is Derron I'm 32 and live in Mass. I was > diagnosed with the disease when I was 15. It progressed pretty > quickly. I have had 3 balloon dilitations. None of them helped in in > any way. My Dr. Advised me to have a Myotomy. I did, again, I showed > no improvement. About 1 year later, it was recomended that I see a > renowned specialist on the procedure. I forget his name but I went to > Mt. Sinai in NY and went to see him for a 2nd Myotomy at age 21. > Again, I showed no improvement. That was the last medical procedure > that I have had. I gave up hope and decided to live with it. Which is > pretty miserable. Recently, I have noticed the condition to be > getting worse. I need almost two bottles of water to eat a meal and > sometimes wake up in the middle of the night with severe pain in my > chest. I have read that it is what's caled a "Symptomatic Diffuse > Esophageal Spasm". The only way I can get the pain to go away to > drink alot of water. Seems there are alot of well informed people in > here. I'm able to maintain my weight and I'm in good shape. The only > medication I take it Nexium for reflux. I went to meet with a Dr. > Coen a few years ago in Boston and he told me that my option was two > have my esophoguas taken out and moved up to my stomach. At age 27 I > didn't think that was in my best interest. Now that my wife and I > have just had a son, I have promised to look into further treatment. > IF anyone has any advice for me it would be much appreciated. Thanks > in advance for the help.>

[Guest guest]

Hi Derron. My name is I'm 30 and have lived with achalasia over half my life. Like you I was diagnosed in 1993 (age 15) and had my first myotomy in December of that year. I was able to live a fairly normal life for 11 years, and had my 2nd myotomy in December of 2004. My surgeon then was Dr. Rice at the Cleveland Clinic. He reassured me he'd try to save my esophagus as much as he could. At that time, he told me that this was a quick fix and that I really needed to have my esophagus removed. He told me the myotomy would probably only last about 3 years or so, and he was correct. December 2007 I was back to have it removed. This has been the best thing I could have ever done. I live a normal life and can't believe what I was missing out on. Believe me when we all say you need expertise here. You want only the best you can get working with you. If you have any questions at all, message me anytime and I'll help you as much as I can.

in KY

achalasia From: ddoucett@...Date: Mon, 28 Apr 2008 23:34:59 +0000Subject: I'm not sure what my options are any more..

Hi everyone. My name is Derron I'm 32 and live in Mass. I was diagnosed with the disease when I was 15. It progressed pretty quickly. I have had 3 balloon dilitations. None of them helped in in any way. My Dr. Advised me to have a Myotomy. I did, again, I showed no improvement. About 1 year later, it was recomended that I see a renowned specialist on the procedure. I forget his name but I went to Mt. Sinai in NY and went to see him for a 2nd Myotomy at age 21. Again, I showed no improvement. That was the last medical procedure that I have had. I gave up hope and decided to live with it. Which is pretty miserable. Recently, I have noticed the condition to be getting worse. I need almost two bottles of water to eat a meal and sometimes wake up in the middle of the night with severe pain in my chest. I have read that it is what's caled a "Symptomatic Diffuse Esophageal Spasm". The only way I can get the pain to go away to drink alot of water. Seems there are alot of well informed people in here. I'm able to maintain my weight and I'm in good shape. The only medication I take it Nexium for reflux. I went to meet with a Dr. Coen a few years ago in Boston and he told me that my option was two have my esophoguas taken out and moved up to my stomach. At age 27 I didn't think that was in my best interest. Now that my wife and I have just had a son, I have promised to look into further treatment. IF anyone has any advice for me it would be much appreciated. Thanks in advance for the help. Spell a grand slam in this game where word skill meets World Series. Get in the game.

[Guest guest]

Derron,

First of all, you're in the right place. I'm new to this group too,

and have already received a lot of tremendous support and great

advice. That said, it's ultimately up to each of us to perform our due

diligence - there is a lot of information out there, and you'll

probably spend a lot of time digging through the studies related to

your symptoms on the NIH site (http://www.pubmedcentral.nih.gov/) and

SpringerLink (http://www.springerlink.com/), among others. At least

that's what I did.

Educate yourself on the various surgical techniques/treatments so that

you'll understand your options prior to seeing a surgeon. Look up the

teaching hospitals near you and initiate a dialog with the head of the

thoracic surgery department. You just have to keep digging until

you're comfortable that you have enough information to make a choice,

and that the person who's treating you has the knowledge and

experience to handle your case. There will always be different views

of how it should be handled, and the scene changes as the doctors gain

more experience - that's not always reflected in the studies.

Last but not least, you can use this group as a sounding board. There

is a wealth of knowledge here, much of it gained from personal

experience. Hopefully you'll contribute yours to those who follow as

well.

Hope this has helped a little. I'm willing to help in whatever way I

can - feel free to email/message me. My thoughts and prayers are with

you.

Lee

[Guest guest]

Hello Derron,

Welcome to the group. This is my first post to a "newbie" since I had my -ectomy (removal of esophagus) done about 4 weeks ago. I am a 34 years old married mother of 2 boys and even though I am getting a dilatation done next Thursday (because of scar tissueing, which is a healing sign, so nothing bad going on!) I am so happy to have had my -ectomy done! And to think that I am just 4 weeks post surgery (surgery date was March 31st, released from hospital April 10th).

Yes, like everyone else tells you, I am telling you too to go see the best specialist you can. Make sure what options you have, but don't freak out when the only option is an -ectomy.

If you have an -ectomy done, make sure you have it done by someone who does plenty of them. This makes surgery a lot safer! You are young, about my age, which is a big pro.

As soon as I am feeling stronger, I am going to write a lengthy post here on the board concerning the differences in -ectomies done in the US and over here in Europe (I am from the Netherlands). This as I think the differences are quite huge.

I had a transhiatal -ectomy. This means my esophagus has been removed completely and half my stomach has been removed as well. The other half has been pulled up into the neck. This is a safe option, as leakages (15% of all -ectomies have leakages as a complication) are less dangerous as in case you have a partial -ectomy. Over here in Holland the transhiatal -ectomy is "the golden standard".

Wishing you the best of luck.

Isabella

I'm not sure what my options are any more..

Hi everyone. My name is Derron I'm 32 and live in Mass. I was diagnosed with the disease when I was 15. It progressed pretty quickly. I have had 3 balloon dilitations. None of them helped in in any way. My Dr. Advised me to have a Myotomy. I did, again, I showed no improvement. About 1 year later, it was recomended that I see a renowned specialist on the procedure. I forget his name but I went to Mt. Sinai in NY and went to see him for a 2nd Myotomy at age 21. Again, I showed no improvement. That was the last medical procedure that I have had. I gave up hope and decided to live with it. Which is pretty miserable. Recently, I have noticed the condition to be getting worse. I need almost two bottles of water to eat a meal and sometimes wake up in the middle of the night with severe pain in my chest. I have read that it is what's caled a "Symptomatic Diffuse Esophageal Spasm". The only way I can get the

pain to go away to drink alot of water. Seems there are alot of well informed people in here. I'm able to maintain my weight and I'm in good shape. The only medication I take it Nexium for reflux. I went to meet with a Dr. Coen a few years ago in Boston and he told me that my option was two have my esophoguas taken out and moved up to my stomach. At age 27 I didn't think that was in my best interest. Now that my wife and I have just had a son, I have promised to look into further treatment. IF anyone has any advice for me it would be much appreciated. Thanks in advance for the help.

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Wow. Thank you to all who replied. , sounds like you and I are

very similar except I haven't had any normal periods. I'm happy

things are going well for you and for you Isabella. Man, I'm starting

to get a little nervous here. I have a feeling that the Ectomy is

going to be my only option. I remember when the Dr in Boston was

telling me about it, he made it sound like Heart transplant surgery.

It scared me. I decided to give it as long as I could and hope that

Modern technology would be my friend. Maybe it has. Isabella, you

sound like you are doing great for one month. What is the procedure

and recovery period like? Also, it sounds like Cleveland is a place

with some good Dr.s. Anyone in the New England area? I'm not sure I

could get all this time off work.

Thanks again everyone.

In achalasia , Hyden <bc223@...> wrote:

>

>

> Hi Derron. My name is I'm 30 and have lived with achalasia

over half my life. Like you I was diagnosed in 1993 (age 15) and had

my first myotomy in December of that year. I was able to live a

fairly normal life for 11 years, and had my 2nd myotomy in December

of 2004. My surgeon then was Dr. Rice at the Cleveland Clinic. He

reassured me he'd try to save my esophagus as much as he could. At

that time, he told me that this was a quick fix and that I really

needed to have my esophagus removed. He told me the myotomy would

probably only last about 3 years or so, and he was correct. December

2007 I was back to have it removed. This has been the best thing I

could have ever done. I live a normal life and can't believe what I

was missing out on. Believe me when we all say you need expertise

here. You want only the best you can get working with you. If you

have any questions at all, message me anytime and I'll help you as

much as I can.

>

> in KY

>

>

> achalasia@...: ddoucett@...: Mon, 28 Apr 2008 23:34:59

+0000Subject: I'm not sure what my options are any more..

>

>

>

>

> Hi everyone. My name is Derron I'm 32 and live in Mass. I was

diagnosed with the disease when I was 15. It progressed pretty

quickly. I have had 3 balloon dilitations. None of them helped in in

any way. My Dr. Advised me to have a Myotomy. I did, again, I showed

no improvement. About 1 year later, it was recomended that I see a

renowned specialist on the procedure. I forget his name but I went to

Mt. Sinai in NY and went to see him for a 2nd Myotomy at age 21.

Again, I showed no improvement. That was the last medical procedure

that I have had. I gave up hope and decided to live with it. Which is

pretty miserable. Recently, I have noticed the condition to be

getting worse. I need almost two bottles of water to eat a meal and

sometimes wake up in the middle of the night with severe pain in my

chest. I have read that it is what's caled a " Symptomatic Diffuse

Esophageal Spasm " . The only way I can get the pain to go away to

drink alot of water. Seems there are alot of well informed people in

here. I'm able to maintain my weight and I'm in good shape. The only

medication I take it Nexium for reflux. I went to meet with a Dr.

Coen a few years ago in Boston and he told me that my option was two

have my esophoguas taken out and moved up to my stomach. At age 27 I

didn't think that was in my best interest. Now that my wife and I

have just had a son, I have promised to look into further treatment.

IF anyone has any advice for me it would be much appreciated. Thanks

in advance for the help.

>

>

>

>

>

>

> _________________________________________________________________

> Spell a grand slam in this game where word skill meets World

Series. Get in the game.

> http://club.live.com/word_slugger.aspx?

icid=word_slugger_wlhm_admod_april08

>

[Guest guest]

Derron,

Noticed you on Careplace and I sent you information for a

contact in the Boston Area. There is also another person here, Dawn from

Boston. Hopefully she will chime in really soon. She just had her surgery

last week Monday.

Best wishes!

in SF

From:

achalasia [mailto:achalasia ] On Behalf Of derrondoucette2001

Sent: Monday, April 28, 2008 4:35 PM

achalasia

Subject: I'm not sure what my options are any more..

Hi everyone. My name is Derron I'm 32 and live

in Mass. I was

diagnosed with the disease when I was 15. It progressed pretty

quickly. I have had 3 balloon dilitations. None of them helped in in

any way. My Dr. Advised me to have a Myotomy. I did, again, I showed

no improvement. About 1 year later, it was recomended that I see a

renowned specialist on the procedure. I forget his name but I went to

Mt. Sinai in NY and went to see him for a 2nd Myotomy at age 21.

Again, I showed no improvement. That was the last medical procedure

that I have had. I gave up hope and decided to live with it. Which is

pretty miserable. Recently, I have noticed the condition to be

getting worse. I need almost two bottles of water to eat a meal and

sometimes wake up in the middle of the night with severe pain in my

chest. I have read that it is what's caled a " Symptomatic Diffuse

Esophageal Spasm " . The only way I can get the pain to go away to

drink alot of water. Seems there are alot of well informed people in

here. I'm able to maintain my weight and I'm in good shape. The only

medication I take it Nexium for reflux. I went to meet with a Dr.

Coen a few years ago in Boston and he told me that my option was two

have my esophoguas taken out and moved up to my stomach. At age 27 I

didn't think that was in my best interest. Now that my wife and I

have just had a son, I have promised to look into further treatment.

IF anyone has any advice for me it would be much appreciated. Thanks

in advance for the help.

[Guest guest]

Derron,

I am similar to you - was diagnosed at age 15/16, the only difference is that I

had a few dilitations early on that seemed to do the trick. Had some issues, but

always thought it was just part of the achalasia, and the doctor we saw never

recommended any routine follow ups or anything, so I went on my way and just

dealt with it. Never had any symptoms as bad as when I was first diagnosed, and

was never warned about how badly things could deteriorate. Had my first son with

no incident, and then after my second son I developed severe aspiration

pneumonia, only to find out how hugely dilated and beyond repair my esophagus

was. Clearly I'm shortening the story here, but I am 34 years old now, and had

my esophagus removed/stomach pulled up just over a year ago. I am doing great.

It sounded scary at first and my first thoughts were how the hell is someone

supposed to live like that. It's been wonderful. It's a scary surgery, and not

an easy recovery - it takes time for your body to adjust and there are some side

effects, but overall it's great and I would do it again without a second

thought. My kids are 3 1/2 and 5 1/2 years old, and one of the biggest reasons I

did it when I did was so I could be here for them and be healthy. The first

thing you need to do is see a VERY experienced surgeon who has a great deal of

achalasia experience and has done many esophagectomies for achalasia. I live in

upstate NY and had my surgery done at The Cleveland Clinic in OH with Dr.

Rice. He is one of the top in the country for achalasia and comes with a great

deal of experience.

I am at work at the moment so I don't have much time, but feel free to ask any

questions you have. There are quite a few of us on here that have had the

surgery within the past couple of years, and while a few people have had some

complications with their surgeries, all of us are doing well now.

in NY

---- derrondoucette2001 <ddoucett@...> wrote:

> Hi everyone. My name is Derron I'm 32 and live in Mass. I was

> diagnosed with the disease when I was 15. It progressed pretty

> quickly. I have had 3 balloon dilitations. None of them helped in in

> any way. My Dr. Advised me to have a Myotomy. I did, again, I showed

> no improvement. About 1 year later, it was recomended that I see a

> renowned specialist on the procedure. I forget his name but I went to

> Mt. Sinai in NY and went to see him for a 2nd Myotomy at age 21.

> Again, I showed no improvement. That was the last medical procedure

> that I have had. I gave up hope and decided to live with it. Which is

> pretty miserable. Recently, I have noticed the condition to be

> getting worse. I need almost two bottles of water to eat a meal and

> sometimes wake up in the middle of the night with severe pain in my

> chest. I have read that it is what's caled a " Symptomatic Diffuse

> Esophageal Spasm " . The only way I can get the pain to go away to

> drink alot of water. Seems there are alot of well informed people in

> here. I'm able to maintain my weight and I'm in good shape. The only

> medication I take it Nexium for reflux. I went to meet with a Dr.

> Coen a few years ago in Boston and he told me that my option was two

> have my esophoguas taken out and moved up to my stomach. At age 27 I

> didn't think that was in my best interest. Now that my wife and I

> have just had a son, I have promised to look into further treatment.

> IF anyone has any advice for me it would be much appreciated. Thanks

> in advance for the help.

>

[Guest guest]

Hi Derron!

I am from the Boston area- Westford to be exact

I just had my Heller myotomy 9 days ago at Mass General Hospital with Dr. Rattner who is the chief of surgery there. It sounds like your situation is more complicated than mine and I only researched a surgeon in respect to a Heller myotomy not an esophagectomy so I am not sure if Dr. Rattner is "the guy" for an esophagectomy or not. I also am only 9 days postop so I sure can't give you any long term follow up data

However, he is the chief of surgery at one of the country's most prestigious hospitals and he claims to do the most Heller myotomies in New England. I certainly felt comfortable going to him and he was recommended on this board by a Beth who I have not been able to find at all despite searching for her quite diligently on the internet. I guess I am hoping she is one of the lucky ones who got better and moved on with her life?!

I would be happy to correspond with you, help you gather data etc. I am actually seeing Dr. Rattner tomorrow morning and would be happy to get any recommendations etc. for you if you like!!

Email me your specifics and I will print them out and give them to him!! When I emailed him the first time he emailed me right back, always calls me back and squeezed me onto his OR schedule within a few weeks of meeting him. He does all his own follow up and plans to do an endoscopy on me annually.

So far I think my post op course has been really good. My scars are teeny, my pain manageable and so far no problems swallowing or eating or drinking (I still am on blenderized food and mushy food).

All my best and you know, for me being on this board gave me hope and energy to fix a problem that had really gotten quite out of hand. I am so grateful to everyone here and helping you would be an honor for me.

take care

Dawn (Boston)

RE: I'm not sure what my options are any more..

Derron,

Noticed you on Careplace and I sent you information for a contact in the Boston Area. There is also another person here, Dawn from Boston. Hopefully she will chime in really soon. She just had her surgery last week Monday.

Best wishes!

in SF

From: achalasia [mailto:achalasia ] On Behalf Of derrondoucette2001Sent: Monday, April 28, 2008 4:35 PMachalasia Subject: I'm not sure what my options are any more..

Hi everyone. My name is Derron I'm 32 and live in Mass. I was diagnosed with the disease when I was 15. It progressed pretty quickly. I have had 3 balloon dilitations. None of them helped in in any way. My Dr. Advised me to have a Myotomy. I did, again, I showed no improvement. About 1 year later, it was recomended that I see a renowned specialist on the procedure. I forget his name but I went to Mt. Sinai in NY and went to see him for a 2nd Myotomy at age 21. Again, I showed no improvement. That was the last medical procedure that I have had. I gave up hope and decided to live with it. Which is pretty miserable. Recently, I have noticed the condition to be getting worse. I need almost two bottles of water to eat a meal and sometimes wake up in the middle of the night with severe pain in my chest. I have read that it is what's caled a "Symptomatic Diffuse Esophageal Spasm". The only way I can get the pain to go away to drink alot of water. Seems there are alot of well informed people in here. I'm able to maintain my weight and I'm in good shape. The only medication I take it Nexium for reflux. I went to meet with a Dr. Coen a few years ago in Boston and he told me that my option was two have my esophoguas taken out and moved up to my stomach. At age 27 I didn't think that was in my best interest. Now that my wife and I have just had a son, I have promised to look into further treatment. IF anyone has any advice for me it would be much appreciated. Thanks in advance for the help.

[Guest guest]

Hi all...

This is my first email from this forum....I found something that i

think will help us to understand this issue that most of us have it--

I found thruw Google website

by using these words...´Symptomatic Diffuse Esophageal Spasm. stresses

social sleep noncardiac unexplained ´

http://www.treatment-options.com/article.cfm?PubID=GA03-4-1-08 & Type=Article & KeyW\

ords=

I have been diagnosticate with Achalasia since 1 year... but with

more than 2 years that i suffer of unexplained esphagus spasm

pain.. that i can mitigate when i drink viscous drink like Pear

juice.. I do not know why work much better than drink plenty of

water..By the moment I got my first dilation for the achalasia in

January from this year...but the dilation don´t stay long... I start

in less than 2 month to get back the problem again to swallow liquid

and solid food. however that unexplained pain that come sporadic at

any time even when i am sleeping... the pear juice help to almost stop

the pain. My situation right now that my doctor recommend me to get an

laparascopic procedure for the lower esophageal sphincter (LES)that

fails to relax properly in response to swallowing by using the method

of Heller Myotomy... The think is that right now i am wondering if

this really will help for the sporadic pain ... however i know that

help for the achalasia problem.

Regards,

Cristina

>

> Hi Derron!

> I am from the Boston area- Westford to be exact

> I just had my Heller myotomy 9 days ago at Mass General Hospital

with Dr. Rattner who is the chief of surgery there. It sounds like

your situation is more complicated than mine and I only researched a

surgeon in respect to a Heller myotomy not an esophagectomy so I am

not sure if Dr. Rattner is " the guy " for an esophagectomy or not. I

also am only 9 days postop so I sure can't give you any long term

follow up data

>

> However, he is the chief of surgery at one of the country's most

prestigious hospitals and he claims to do the most Heller myotomies in

New England. I certainly felt comfortable going to him and he was

recommended on this board by a Beth who I have not been able to

find at all despite searching for her quite diligently on the

internet. I guess I am hoping she is one of the lucky ones who got

better and moved on with her life?!

>

> I would be happy to correspond with you, help you gather data etc.

I am actually seeing Dr. Rattner tomorrow morning and would be happy

to get any recommendations etc. for you if you like!!

> Email me your specifics and I will print them out and give them to

him!! When I emailed him the first time he emailed me right back,

always calls me back and squeezed me onto his OR schedule within a few

weeks of meeting him. He does all his own follow up and plans to do

an endoscopy on me annually.

>

> So far I think my post op course has been really good. My scars are

teeny, my pain manageable and so far no problems swallowing or eating

or drinking (I still am on blenderized food and mushy food).

> All my best and you know, for me being on this board gave me hope

and energy to fix a problem that had really gotten quite out of hand.

I am so grateful to everyone here and helping you would be an honor

for me.

> take care

> Dawn (Boston)

>

> I'm not sure what my options are any more..

>

>

>

> Hi everyone. My name is Derron I'm 32 and live in Mass. I was

> diagnosed with the disease when I was 15. It progressed pretty

> quickly. I have had 3 balloon dilitations. None of them helped in in

> any way. My Dr. Advised me to have a Myotomy. I did, again, I showed

> no improvement. About 1 year later, it was recomended that I see a

> renowned specialist on the procedure. I forget his name but I went to

> Mt. Sinai in NY and went to see him for a 2nd Myotomy at age 21.

> Again, I showed no improvement. That was the last medical procedure

> that I have had. I gave up hope and decided to live with it. Which is

> pretty miserable. Recently, I have noticed the condition to be

> getting worse. I need almost two bottles of water to eat a meal and

> sometimes wake up in the middle of the night with severe pain in my

> chest. I have read that it is what's caled a " Symptomatic Diffuse

> Esophageal Spasm " . The only way I can get the pain to go away to

> drink alot of water. Seems there are alot of well informed people in

> here. I'm able to maintain my weight and I'm in good shape. The only

> medication I take it Nexium for reflux. I went to meet with a Dr.

> Coen a few years ago in Boston and he told me that my option was two

> have my esophoguas taken out and moved up to my stomach. At age 27 I

> didn't think that was in my best interest. Now that my wife and I

> have just had a son, I have promised to look into further treatment.

> IF anyone has any advice for me it would be much appreciated. Thanks

> in advance for the help.

>

[Guest guest]

Dawn,

Thanks for the reply. Wow, what a small world. I'm also from

Westford. Born and raised. In fact, my 5 month old son is a Grey

Ghost in training. I first realized there was something wrong with me

when I couldn't get down the Westford Academy Rice as a Freshman.

Maybe they have something in our lovely small town's water?

That's great that you're doing well after your Myotomy. I know I have

met Dr. Rattner before. He might have done my first Heller. I can't

remember. I'm trying to locate all my records. I know that I got them

all together and brought them to see a Dr. Coen in Boston about 5

years ago. He told me that I needed to have my E taken out. He

completely freaked me out and I raised the white flag and gave up.

Was Rattner the Acalasia specialist? If so, maybe I will go see him

again.

Thanks again

Derron

>

> Hi Derron!

> I am from the Boston area- Westford to be exact

> I just had my Heller myotomy 9 days ago at Mass General Hospital

with Dr. Rattner who is the chief of surgery there. It sounds like

your situation is more complicated than mine and I only researched a

surgeon in respect to a Heller myotomy not an esophagectomy so I am

not sure if Dr. Rattner is " the guy " for an esophagectomy or not. I

also am only 9 days postop so I sure can't give you any long term

follow up data

>

> However, he is the chief of surgery at one of the country's most

prestigious hospitals and he claims to do the most Heller myotomies

in New England. I certainly felt comfortable going to him and he was

recommended on this board by a Beth who I have not been able

to find at all despite searching for her quite diligently on the

internet. I guess I am hoping she is one of the lucky ones who got

better and moved on with her life?!

>

> I would be happy to correspond with you, help you gather data etc.

I am actually seeing Dr. Rattner tomorrow morning and would be happy

to get any recommendations etc. for you if you like!!

> Email me your specifics and I will print them out and give them to

him!! When I emailed him the first time he emailed me right back,

always calls me back and squeezed me onto his OR schedule within a

few weeks of meeting him. He does all his own follow up and plans to

do an endoscopy on me annually.

>

> So far I think my post op course has been really good. My scars

are teeny, my pain manageable and so far no problems swallowing or

eating or drinking (I still am on blenderized food and mushy food).

> All my best and you know, for me being on this board gave me hope

and energy to fix a problem that had really gotten quite out of

hand. I am so grateful to everyone here and helping you would be an

honor for me.

> take care

> Dawn (Boston)

>

> I'm not sure what my options are any more..

>

>

>

> Hi everyone. My name is Derron I'm 32 and live in Mass. I was

> diagnosed with the disease when I was 15. It progressed pretty

> quickly. I have had 3 balloon dilitations. None of them helped in

in

> any way. My Dr. Advised me to have a Myotomy. I did, again, I

showed

> no improvement. About 1 year later, it was recomended that I see

a

> renowned specialist on the procedure. I forget his name but I

went to

> Mt. Sinai in NY and went to see him for a 2nd Myotomy at age 21.

> Again, I showed no improvement. That was the last medical

procedure

> that I have had. I gave up hope and decided to live with it.

Which is

> pretty miserable. Recently, I have noticed the condition to be

> getting worse. I need almost two bottles of water to eat a meal

and

> sometimes wake up in the middle of the night with severe pain in

my

> chest. I have read that it is what's caled a " Symptomatic Diffuse

> Esophageal Spasm " . The only way I can get the pain to go away to

> drink alot of water. Seems there are alot of well informed people

in

> here. I'm able to maintain my weight and I'm in good shape. The

only

> medication I take it Nexium for reflux. I went to meet with a Dr.

> Coen a few years ago in Boston and he told me that my option was

two

> have my esophoguas taken out and moved up to my stomach. At age

27 I

> didn't think that was in my best interest. Now that my wife and I

> have just had a son, I have promised to look into further

treatment.

> IF anyone has any advice for me it would be much appreciated.

Thanks

> in advance for the help.

>