Re: New member and new to

[Guest guest]

Hi Lynne,

Well, the first thing that comes to my mind is always get second opinions.

Heller Myotomies are done very well these days if you have the right doctor, but

it is still surgery. On the other hand, don't wait too long either. I had the

unfortunate experience of waiting too long and my esophagus stretched and caused

me to almost have the esophagectomy rather than heller myotomy. Fortunately six

years ago I did find a surgeon willing to try to the heller and it worked out

more or less. So far I still have my esophagus.

Sorry about the rambling. I would say get a second opinion and make a decision

based on that. Make sure you get a doctor who has a lot of experience with

Achalasia. Too many think they can do these surgeries, but being that it is

rare it helps to find someone experienced. Luckily I did. If you want to talk

about what to expect after the heller, let me know. Feel free to ask any

questions.

Hope this helps,

Rob

achalasia@...: daniels_lynne@...: Tue, 23 Sep 2008

18:30:42 +0000Subject: New member and new to achalasia

My name is Lynne, I am 27 years old and was just told after four yearsof one

doctor and one diagnosis after another that I have achalasia. My doctor has told

me that the surgery would be my best options beingthat I am so young and overall

healthy. My question is NOW WHAT? Anysuggestions on what to ask my doctor or

what to expect. Any insightwould be great!!!Thank you allLynne

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[Guest guest]

Hi Lynn -

I think the most important thing is to find out how experienced your

doc is as that's one of the major factors in the success rate. Read

through some of the posts here if you haven't already - lots of info

and fears etc. to read which will hopefully comfort you!

It is a scary thing to go through but all in all sounds worth it

(although I'm still only 9 days post-op so still waiting to reap all

the benefits!!). It took me 13 years to get proper help, and I had

the possibility of the op hanging over me for three months and it

totally consumed me. The last two weeks have been pure hell (more

mental torture than anything - not being able to eat anything at all

only fruit joice and bovril - that's a meat stock thing for all you

americans - is pure torture!) but the last couple of days I have

really started to feel a lot better. This board helped a lot - makes

you feel less alone so check in from time to time. I actually got to

a point where I felt that i was " managing " the condition becuase I was

using water to force things down (although in hindsight that wasn't

good because it was just stretching me out inside) but suffered

terrible with bronchitis and breathing food into my lungs during my

sleep and had a terrible hacking cough for longer than I can remember

(i sounded like a homeless person!) and i've had two whole weeks of

cough free sleep! I am so excited about all the benefits this will

bring ... so stay strong, and listen to all the advice here and it

will all be okay and will be worth it!

Good luck,

Hannah (London)

[Guest guest]

Hannah,

Sounds like you did the same thing I did. I spent about 12 years forcing things

down thus stretching out my esophagus. I have what is called a mega-esophagus

now, but so far the heller is working. I wouldn't say life is perfect because

the size of the esophagus causes things to get caught here and there on the way

down the twisted path. But, being 6 years post op I would say life is

acceptable most of the time. I just hope it lasts...no one really knows how

long until the ultimate surgery of removal..ugh. How did you find out it was

time for surgery?

Rob

achalasia@...: hannah_j_mitchell@...: Tue, 23

Sep 2008 19:07:50 +0000Subject: Re: New member and new to achalasia

Hi Lynn -I think the most important thing is to find out how experienced yourdoc

is as that's one of the major factors in the success rate. Readthrough some of

the posts here if you haven't already - lots of infoand fears etc. to read which

will hopefully comfort you!It is a scary thing to go through but all in all

sounds worth it(although I'm still only 9 days post-op so still waiting to reap

allthe benefits!!). It took me 13 years to get proper help, and I hadthe

possibility of the op hanging over me for three months and ittotally consumed

me. The last two weeks have been pure hell (moremental torture than anything -

not being able to eat anything at allonly fruit joice and bovril - that's a meat

stock thing for all youamericans - is pure torture!) but the last couple of days

I havereally started to feel a lot better. This board helped a lot - makesyou

feel less alone so check in from time to time. I actually got toa point where I

felt that i was " managing " the condition becuase I wasusing water to force

things down (although in hindsight that wasn'tgood because it was just

stretching me out inside) but sufferedterrible with bronchitis and breathing

food into my lungs during mysleep and had a terrible hacking cough for longer

than I can remember(i sounded like a homeless person!) and i've had two whole

weeks ofcough free sleep! I am so excited about all the benefits this willbring

.... so stay strong, and listen to all the advice here and itwill all be okay and

will be worth it!Good luck,Hannah (London)

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1DAD532637!5295.entry?ocid=TXT_TAGLM_WL_domore_092008

[Guest guest]

Hi Rob -

I had no idea how much damage I was doing to myself!! My doc is

hopeful that there will be *some* shrinkage during my healing period,

but I guess I'll just have to stick to really small portions of things

and hope that things go down quickly...

The provocation for surgery was my general decline in health. I had a

terrible cough that got worse over a period of about 6 years (i was

worried I was going to have lung cancer!), and for the last 2 - 3

years multiple cases of bronchitis and for the last 6-8 months barely

went more than a week or two without a fever (although kept working

through it which i'm sure didn't help!) and finally gave myself an

unmibilical hernia from all the coughing (which they wouldn't operate

on because my cough was too bad!! I almost died laughing [and

coughing] at the irony...). I'd been diagnosed with a digestion

problems (although they didn't tell me it was called achalasia) when I

was 23 but they told me there was nothing to be done. I'd changed GP

a couple of times (moving about) and my most recent one still hadn't

got my notes so I did a bit of research online, decided my chest

infections were related to my chest infections and went to see my GP

three times until he referred me to a specialist (it seemed to happen

much quicker once I told him I had medical insurance), that was in

May, and i had my op mid-september.

How about you? Did you realise you had the condition? Or did the

doctors just not think it bad enough to do a hellers?

Hannah.

>

> Hannah,

>

> Sounds like you did the same thing I did. I spent about 12 years

forcing things down thus stretching out my esophagus. I have what is

called a mega-esophagus now, but so far the heller is working. I

wouldn't say life is perfect because the size of the esophagus causes

things to get caught here and there on the way down the twisted path.

But, being 6 years post op I would say life is acceptable most of the

time. I just hope it lasts...no one really knows how long until the

ultimate surgery of removal..ugh. How did you find out it was time

for surgery?

>

> Rob

>

[Guest guest]

Hi Hannah,

Thanks for your story. After my surgery I also had hoped for shrinkage, but it

really hasn't strunk at all. In fact the top part got a little bigger for some

reason in the last year or so. But, I'm still making out ok and haven't lost

any weight recently. In fact, I've actually gained quite a bit in the last 6

years. How large has your esophagus gotten? Mine is up there...averages 5 cm

across in most places.

As for my story, I was officially diagnosed when I was 18. I had a balloon

dilatation done and the result was acceptable to allow me to get food down.

However, it started to tighten more during the next few years and soon I was

forcing food down with lots of liquid. I too had infections and things and

trouble sleeping due to coughing things up. After 12 years, right before I

turned 30, I threw up violently one night and tore my esophagus. That is called

a Mallory Weiss tear named after a guy who died from it. I lost about 2 quarts

of blood, so the the doctors say, and had my first ambulance ride to the

hospital where they chemically quarterized the esophagus from the inside. While

they were in there they told me how bad the achalasia was. That lead me to talk

to surgeons...one of which scared the hell out of me by saying all I do was have

my esophagus removed. But, luckily I found the right surgeon here in Philly PA

where I live. He was passionate about fixing my problem with a heller myotomy.

I'm on acid blockers now...max dose of prilosec...and I avoid breads and heavy

foods, but I'm doing ok. I eat a lot of soups...which I've learned to make at

home to be healthier. I go to the gym regularily to try to keep the rest of my

body working right and hope that I can dodge the second worst surgery there

is...the dreaded esophagectomy.

So, that is it in a nutshell. I'm 36 now...so will see how it goes. The first

surgeon who scared me said I would only last 3 years with a heller....so, I've

passed her estimate thank goodness. It has been a bumpy road and mentally very

difficult, but at least I might have a few years of feeling alive again.

Rob

achalasia@...: hannah_j_mitchell@...: Tue, 23

Sep 2008 19:54:39 +0000Subject: Re: New member and new to achalasia

Hi Rob -I had no idea how much damage I was doing to myself!! My doc ishopeful

that there will be *some* shrinkage during my healing period,but I guess I'll

just have to stick to really small portions of thingsand hope that things go

down quickly...The provocation for surgery was my general decline in health. I

had aterrible cough that got worse over a period of about 6 years (i wasworried

I was going to have lung cancer!), and for the last 2 - 3years multiple cases of

bronchitis and for the last 6-8 months barelywent more than a week or two

without a fever (although kept workingthrough it which i'm sure didn't help!)

and finally gave myself anunmibilical hernia from all the coughing (which they

wouldn't operateon because my cough was too bad!! I almost died laughing

[andcoughing] at the irony...). I'd been diagnosed with a digestionproblems

(although they didn't tell me it was called achalasia) when Iwas 23 but they

told me there was nothing to be done. I'd changed GPa couple of times (moving

about) and my most recent one still hadn'tgot my notes so I did a bit of

research online, decided my chestinfections were related to my chest infections

and went to see my GPthree times until he referred me to a specialist (it seemed

to happenmuch quicker once I told him I had medical insurance), that was inMay,

and i had my op mid-september.How about you? Did you realise you had the

condition? Or did thedoctors just not think it bad enough to do a

hellers?Hannah.>> Hannah,> > Sounds like you did the same thing I did. I spent about 12

yearsforcing things down thus stretching out my esophagus. I have what iscalled

a mega-esophagus now, but so far the heller is working. Iwouldn't say life is

perfect because the size of the esophagus causesthings to get caught here and

there on the way down the twisted path.But, being 6 years post op I would say

life is acceptable most of thetime. I just hope it lasts...no one really knows

how long until theultimate surgery of removal..ugh. How did you find out it was

timefor surgery?> > Rob>

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[Guest guest]

Hi Lynne,

Welcome to our little family!! I am sure you will be bombarded with replies

from everyone so I will try to keep my response somewhat brief. You are in the

right place and any questions you have you can generally find the answers here!!

I think the most recurrent theme for questions like yours is to make sure you

see a surgeon with LOTS of experience. If you go to the main page of this

website there is a list of surgeons recommended by members of this site. Lots

of people will chime in and recommend doctors if you share where you live.

Next is to do your research and ask lots of questions.

Wise people on this board (Sandy I think?) told me to really feel free to ask

for the moon when it comes to dealing with the doctors/surgeons. She was

absolutely right!! Chiefs of surgery at major teaching hospitals called me,

emailed me and squeezed me into quick appointment slots once they knew I had

achalasia. I was very surprised at this phenomenon and I work in medicine

Look at the surgery as a positive thing and something that will finally make

your life more normal and help to restore healthy normal eating!! Don't fear

it. My heller was really pretty easy and my only regret was that I didn't have

it sooner than I did.

I wish you all the best and as you have more specific questions feel free to

keep asking as people on this board are very giving of their time and energy!!

Dawn

New member and new to achalasia

My name is Lynne, I am 27 years old and was just told after four years

of one doctor and one diagnosis after another that I have achalasia.

My doctor has told me that the surgery would be my best options being

that I am so young and overall healthy. My question is NOW WHAT? Any

suggestions on what to ask my doctor or what to expect. Any insight

would be great!!!

Thank you all

Lynne

[Guest guest]

Lynne wrote:

> ... My question is NOW WHAT? Any

> suggestions on what to ask my doctor or what to expect. ...

The first thing is to make sure you are dealing with doctors that have

treated a lot of patients with achalasia. It would be good to have a

surgeon that has done lots of Heller myotomies. Fifty or more would be

good. It is good to have the surgery done in a medical center that also

does these surgeries often. You may have to travel to get this level of

experience.

You should know that the surgery may not be the last treatment you will

need. It is probably the best way to start but in time, hopefully many

years but it could be just a few, symptoms may again be a problem and

more treatments, probably dilatations, will be needed.

There are other treatments for achalasia besides the surgery, such as

dilatation and Botox, but at your age myotomy is generally considered

the best option. You should check out the others just to be sure you are

doing what is right for you.

The surgery done laparoscopically is not too bad and the pain is

generally well controlled. You will need some time off from everything,

about two weeks, and you will be on a restricted diet for a few weeks.

You want to be sure your insurance is fully covering the surgery.

Sometimes you need special approval to go to the doctor and medical

center you want to in stead of the cheap inexperienced ones they want

you to go to. (I mean experienced with achalasia, other surgical

experience is not the same).

notan