Just diagnosed

[Guest guest]

Hi Farah,

I just joined this group and we live in the Bay area (San

West). My husband has just been diagnosed with PA. His

endocrinologist has suggested that we do AVS at Mayo clinic with Dr.

Young. Who is the doctor you see here ? We would be very interested

in consulting with him/her.

Thanks,

Sapna

> > > >

> > > > I'm a 39-year-old female and have just been diagnosed with

Conn's. CT

> > > > scan and ultrasound indicate a right adrenal adenoma, and it

looks

> > > > like I'll be having a laparoscopic adrenalectomy sometime in

the next

> > > > couple of months.

> > > >

> > > > I've been hypertensive for about 10 years and because I have

a family

> > > > history of HTN (my mother has had it since she was around

30), and I

> > > > am somewhat overweight, it probably never occured to my

doctors that

> > > > there may be other underlying causes of my HTN besides

heredity and

> > > > lifestyle. I've been on nearly every available HTN med -

usually at

> > > > maximum doses - generally with only temporary and minimal

success at

> > > > controlling my HTN. They finally discovered that my

potassium level

> > > > was rock-bottom and unresponsive to supplements, and

referred me to a

> > > > series of specialists who were able to get to the root of

the problem

> > > > pretty quickly. Unfortunately, because my HTN has gone

uncontrolled

> > > > for so long, it's likely that I'll still have to be on meds

after

> > > > surgery, but they expect that my HTN will be much easier to

control,

> > > > with fewer meds at much smaller doses.

> > > >

> > > > From what I've been reading here, it sounds like I'm pretty

lucky as

> > > > I haven't suffered much from what seem to be the common

symptoms

> > > > (headaches, cramping, fatigue, depression), although I have

seen some

> > > > effects (irritability, mood swings, swollen ankles) over the

past

> > > > year or so. I just thought it was my weight and middle-aged

hormones

> > > > kicking in.

> > > >

> > > > At this point, I'm just happy that they've found the problem

and that

> > > > there is a solution. While awaiting surgery, I'm still

taking Norvasc

> > > > (10mg/day) and the doctor put me on aldactone (200mg/day)

which has

> > > > almost completely alleviated the swelling in my legs,

although I

> > > > think it is making me tired. My BP was 131/82 this morning.

My

> > > > consultation with the surgeon is at the end of September.

> > > >

> > > > I'm glad to learn that I'm not alone, even though Conn's is

> > > > relatively rare. I've skimmed through some of the

discussions here,

> > > > and look forward to reading more. Three cheers for the

internet!

> > > >

> > > >

> > > >

> > >

> > >

[Guest guest]

Hi Sapna:

You must have seen Dr. . He is my doctor and the only one I know

who is well familiar with Dr. Young and the research at Mayo Clinic. I'll be

more than happy to talk to you about my experience. By the way who is your

husband's doctor? I live in Santa Clara.

Farah

On 9/17/07, sapna_52 <sapna_52@...> wrote:

>

> Hi Farah,

>

> I just joined this group and we live in the Bay area (San

> West). My husband has just been diagnosed with PA. His

> endocrinologist has suggested that we do AVS at Mayo clinic with Dr.

> Young. Who is the doctor you see here ? We would be very interested

> in consulting with him/her.

>

> Thanks,

> Sapna

>

>

> > > > >

> > > > > I'm a 39-year-old female and have just been diagnosed with

> Conn's. CT

> > > > > scan and ultrasound indicate a right adrenal adenoma, and it

> looks

> > > > > like I'll be having a laparoscopic adrenalectomy sometime in

> the next

> > > > > couple of months.

> > > > >

> > > > > I've been hypertensive for about 10 years and because I have

> a family

> > > > > history of HTN (my mother has had it since she was around

> 30), and I

> > > > > am somewhat overweight, it probably never occured to my

> doctors that

> > > > > there may be other underlying causes of my HTN besides

> heredity and

> > > > > lifestyle. I've been on nearly every available HTN med -

> usually at

> > > > > maximum doses - generally with only temporary and minimal

> success at

> > > > > controlling my HTN. They finally discovered that my

> potassium level

> > > > > was rock-bottom and unresponsive to supplements, and

> referred me to a

> > > > > series of specialists who were able to get to the root of

> the problem

> > > > > pretty quickly. Unfortunately, because my HTN has gone

> uncontrolled

> > > > > for so long, it's likely that I'll still have to be on meds

> after

> > > > > surgery, but they expect that my HTN will be much easier to

> control,

> > > > > with fewer meds at much smaller doses.

> > > > >

> > > > > From what I've been reading here, it sounds like I'm pretty

> lucky as

> > > > > I haven't suffered much from what seem to be the common

> symptoms

> > > > > (headaches, cramping, fatigue, depression), although I have

> seen some

> > > > > effects (irritability, mood swings, swollen ankles) over the

> past

> > > > > year or so. I just thought it was my weight and middle-aged

> hormones

> > > > > kicking in.

> > > > >

> > > > > At this point, I'm just happy that they've found the problem

> and that

> > > > > there is a solution. While awaiting surgery, I'm still

> taking Norvasc

> > > > > (10mg/day) and the doctor put me on aldactone (200mg/day)

> which has

> > > > > almost completely alleviated the swelling in my legs,

> although I

> > > > > think it is making me tired. My BP was 131/82 this morning.

> My

> > > > > consultation with the surgeon is at the end of September.

> > > > >

> > > > > I'm glad to learn that I'm not alone, even though Conn's is

> > > > > relatively rare. I've skimmed through some of the

> discussions here,

> > > > > and look forward to reading more. Three cheers for the

> internet!

> > > > >

> > > > >

> > > > >

> > > >

> > > >

[Guest guest]

> > > > >

> > > > > I'm a 39-year-old female and have just been diagnosed with

> Conn's. CT

> > > > > scan and ultrasound indicate a right adrenal adenoma, and

it

> looks

> > > > > like I'll be having a laparoscopic adrenalectomy sometime

in

> the next

> > > > > couple of months.

> > > > >

> > > > > I've been hypertensive for about 10 years and because I

have

> a family

> > > > > history of HTN (my mother has had it since she was around

> 30), and I

> > > > > am somewhat overweight, it probably never occured to my

> doctors that

> > > > > there may be other underlying causes of my HTN besides

> heredity and

> > > > > lifestyle. I've been on nearly every available HTN med -

> usually at

> > > > > maximum doses - generally with only temporary and minimal

> success at

> > > > > controlling my HTN. They finally discovered that my

> potassium level

> > > > > was rock-bottom and unresponsive to supplements, and

> referred me to a

> > > > > series of specialists who were able to get to the root of

> the problem

> > > > > pretty quickly. Unfortunately, because my HTN has gone

> uncontrolled

> > > > > for so long, it's likely that I'll still have to be on meds

> after

> > > > > surgery, but they expect that my HTN will be much easier to

> control,

> > > > > with fewer meds at much smaller doses.

> > > > >

> > > > > From what I've been reading here, it sounds like I'm pretty

> lucky as

> > > > > I haven't suffered much from what seem to be the common

> symptoms

> > > > > (headaches, cramping, fatigue, depression), although I have

> seen some

> > > > > effects (irritability, mood swings, swollen ankles) over

the

> past

> > > > > year or so. I just thought it was my weight and middle-aged

> hormones

> > > > > kicking in.

> > > > >

> > > > > At this point, I'm just happy that they've found the

problem

> and that

> > > > > there is a solution. While awaiting surgery, I'm still

> taking Norvasc

> > > > > (10mg/day) and the doctor put me on aldactone (200mg/day)

> which has

> > > > > almost completely alleviated the swelling in my legs,

> although I

> > > > > think it is making me tired. My BP was 131/82 this morning.

> My

> > > > > consultation with the surgeon is at the end of September.

> > > > >

> > > > > I'm glad to learn that I'm not alone, even though Conn's is

> > > > > relatively rare. I've skimmed through some of the

> discussions here,

> > > > > and look forward to reading more. Three cheers for the

> internet!

> > > > >

> > > > >

> > > > >

> > > >

> > > >

[Guest guest]

I would strongly recommend you go to Mayo's and see Dr. Young's team.? Be sure

he gets and AVS before surgery (done with ACTH).? Has he been tried on spiro or

Inspra?

Hi Farah,

I just joined this group and we live in the Bay area (San

West). My husband has just been diagnosed with PA. His

endocrinologist has suggested that we do AVS at Mayo clinic with Dr.

Young. Who is the doctor you see here ? We would be very interested

in consulting with him/her.

Thanks,

Sapna

May your pressure be low!

CE Grim MD

Clinical Professor of Internal Medicine

Professor of Epidemiology

Board Certified in Internal Medicine, Geriatrics and Hypertension

Re: Just Diagnosed

Hi Farah,

I just joined this group and we live in the Bay area (San

West). My husband has just been diagnosed with PA. His

endocrinologist has suggested that we do AVS at Mayo clinic with Dr.

Young. Who is the doctor you see here ? We would be very interested

in consulting with him/her.

Thanks,

Sapna

> > > >

> > > > I'm a 39-year-old female and have just been diagnosed with

Conn's. CT

> > > > scan and ultrasound indicate a right adrenal adenoma, and it

looks

> > > > like I'll be having a laparoscopic adrenalectomy sometime in

the next

> > > > couple of months.

> > > >

> > > > I've been hypertensive for about 10 years and because I have

a family

> > > > history of HTN (my mother has had it since she was around

30), and I

> > > > am somewhat overweight, it probably never occured to my

doctors that

> > > > there may be other underlying causes of my HTN besides

heredity and

> > > > lifestyle. I've been on nearly every available HTN med -

usually at

> > > > maximum doses - generally with only temporary and minimal

success at

> > > > controlling my HTN. They finally discovered that my

potassium level

> > > > was rock-bottom and unresponsive to supplements, and

referred me to a

> > > > series of specialists who were able to get to the root of

the problem

> > > > pretty quickly. Unfortunately, because my HTN has gone

uncontrolled

> > > > for so long, it's likely that I'll still have to be on meds

after

> > > > surgery, but they expect that my HTN will be much easier to

control,

> > > > with fewer meds at much smaller doses.

> > > >

> > > > From what I've been reading here, it sounds like I'm pretty

lucky as

> > > > I haven't suffered much from what seem to be the common

symptoms

> > > > (headaches, cramping, fatigue, depression), although I have

seen some

> > > > effects (irritability, mood swings, swollen ankles) over the

past

> > > > year or so. I just thought it was my weight and middle-aged

hormones

> > > > kicking in.

> > > >

> > > > At this point, I'm just happy that they've found the problem

and that

> > > > there is a solution. While awaiting surgery, I'm still

taking Norvasc

> > > > (10mg/day) and the doctor put me on aldactone (200mg/day)

which has

> > > > almost completely alleviated the swelling in my legs,

although I

> > > > think it is making me tired. My BP was 131/82 this morning.

My

> > > > consultation with the surgeon is at the end of September.

> > > >

> > > > I'm glad to learn that I'm not alone, even though Conn's is

> > > > relatively rare. I've skimmed through some of the

discussions here,

> > > > and look forward to reading more. Three cheers for the

internet!

> > > >

> > > >

> > > >

> > >

> > >

[Guest guest]

Dawn,

Welcome to the group.

Botox isn't a treatment often recommended because dilations and

myotomy's are usually considered the " standard " treatment. Also each

treatment may affect the effectiveness of a lap myotomy because it

causes scarring.

Let us know who your GI doctor is and where you live so we can

recommend some knowledgeable Achalasia doctors for a consult.

Lis

>

> I was just diagnosed with achalasia. The only symptom I had was the

> difficulty swallowing foods. No heart burn, no rapid weight loss.

> It's at the point that I'm regurgitating my food more frequently. I

> have to drink tons of water with no ice. When it gets real bad it

> goes out my nose. Sorry for being graphic but I figured everyone

> here would understand.

>

> I hate it. I don't like going to restaurants. First thing I look

for

> is a bathroom just in case. I'm thin but not because of this, not

> underweight just small. So of course I get " She must be bulimic " !

> Can you imagine being told that when all you want is to be able to

> eat a normal meal without having to keep trying?

>

> It's only the lower esophagus. Is this the case for anyone else?

>

> They stretched me once but that lasted a week. I'm going to try for

> the botox injections. Has anyone had any dealings with this

> procedure?

>

> Thanks for reading.

>

>

> Sincerely,

>

> Dawn

>

[Guest guest]

Hi Dawn. I agree...you have to be strategic in how you get treated. Lis is right....due to scarring you cannot have certain procedures more than once or before getting others. This is what one of the top doctors told us about my dad. You really want to do your research before you decide what the next step will be. It is good that you found this group....everyone has great knowledge to share. I understand how you must feel about people making comments about bulimia...unfortunately people often associate psychiatric or eating disorders as the reason people cannot and are not eating (this is what we experienced with my father). When in reality once you know about the

Achalasia you can easily see the physical problem that is occurring. Hang in there! You are in the right place here. lclittle254 <lclittle254@...> wrote: Dawn,Welcome to the group. Botox isn't a treatment often recommended because dilations and myotomy's are usually considered the "standard" treatment. Also each

treatment may affect the effectiveness of a lap myotomy because it causes scarring.Let us know who your GI doctor is and where you live so we can recommend some knowledgeable Achalasia doctors for a consult.Lis>> I was just diagnosed with achalasia. The only symptom I had was the > difficulty swallowing foods. No heart burn, no rapid weight loss. > It's at the point that I'm regurgitating my food more frequently. I > have to drink tons of water with no ice. When it gets real bad it > goes out my nose. Sorry for being graphic but I figured everyone > here would understand.> > I hate it. I don't like going to restaurants. First thing I look for > is a bathroom just in case. I'm thin but not because of this, not > underweight just small. So of

course I get "She must be bulimic"! > Can you imagine being told that when all you want is to be able to > eat a normal meal without having to keep trying? > > It's only the lower esophagus. Is this the case for anyone else? > > They stretched me once but that lasted a week. I'm going to try for > the botox injections. Has anyone had any dealings with this > procedure?> > Thanks for reading.> > > Sincerely,> > Dawn>

Be a better Globetrotter. Get better travel answers from someone who knows. Answers - Check it out.

[Guest guest]

Dawn, before you decide to have the Botox, read

this article, then search out the internet for similar

findings.

Endoscopic Therapy for Achalasia Before Heller Myotomy Results in Worse Outcomes Than Heller Myotomy Alone

Maggie

AlabamaSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Dawn,

I have done the botox about five times now. It works, but the time in between shots gets shorter and shorter. For me and my situation, its been the better thing to do versus surgery.

Good luck.

Thanks,

Peggy

Just diagnosed

I was just diagnosed with achalasia. The only symptom I had was the

difficulty swallowing foods. No heart burn, no rapid weight loss.

It's at the point that I'm regurgitating my food more frequently. I

have to drink tons of water with no ice. When it gets real bad it

goes out my nose. Sorry for being graphic but I figured everyone

here would understand.

I hate it. I don't like going to restaurants. First thing I look for

is a bathroom just in case. I'm thin but not because of this, not

underweight just small. So of course I get "She must be bulimic"!

Can you imagine being told that when all you want is to be able to

eat a normal meal without having to keep trying?

It's only the lower esophagus. Is this the case for anyone else?

They stretched me once but that lasted a week. I'm going to try for

the botox injections. Has anyone had any dealings with this

procedure?

Thanks for reading.

Sincerely,

Dawn

Email and AIM finally together. You've gotta check out free AOL Mail!

[Guest guest]

Hey Dawn - where do you live? If you give us your location, we can

guide you to a doctor who is an achalasia expert. Not all GI's are

and I'm going to suggest that yours is not because unless you are not

a good surgical candidate, botox is not your answer. How old are you?

do you have any other medical issues?

The surgery is mostly performed laproscopically now so you're only

looking at a day or so in the hospital and pretty quick recovery. It

will not 'cure' your A but it will make it manageable so that you can

start enjoying eating out again.

In the meantime, keep reading here and asking questions. To be bold-

combined, we here on this group know far more about achalasia than

anyone - doctors included. We can help you get the best treatment

possible.

Keep us posted.

Happy Swallowing!

- in NC

>

> I was just diagnosed with achalasia. The only symptom I had was the

> difficulty swallowing foods. No heart burn, no rapid weight loss.

> It's at the point that I'm regurgitating my food more frequently. I

> have to drink tons of water with no ice. When it gets real bad it

> goes out my nose. Sorry for being graphic but I figured everyone

> here would understand.

>

> I hate it. I don't like going to restaurants. First thing I look

for

> is a bathroom just in case. I'm thin but not because of this, not

> underweight just small. So of course I get " She must be bulimic " !

> Can you imagine being told that when all you want is to be able to

> eat a normal meal without having to keep trying?

>

> It's only the lower esophagus. Is this the case for anyone else?

>

> They stretched me once but that lasted a week. I'm going to try for

> the botox injections. Has anyone had any dealings with this

> procedure?

>

> Thanks for reading.

>

>

> Sincerely,

>

> Dawn

>

[Guest guest]

I live in the Portland Oregon area. Right now I go to Pacific

Digestive. My doctor is Dr. Ferrin.

I'm 38 and have no other health issues.

I wish I could find something natural. Someone had a site about some

B vitamin but he never replied to me.

> >

> > I was just diagnosed with achalasia. The only symptom I had was

the

> > difficulty swallowing foods. No heart burn, no rapid weight loss.

> > It's at the point that I'm regurgitating my food more frequently.

I

> > have to drink tons of water with no ice. When it gets real bad it

> > goes out my nose. Sorry for being graphic but I figured everyone

> > here would understand.

> >

> > I hate it. I don't like going to restaurants. First thing I look

> for

> > is a bathroom just in case. I'm thin but not because of this, not

> > underweight just small. So of course I get " She must be bulimic " !

> > Can you imagine being told that when all you want is to be able

to

> > eat a normal meal without having to keep trying?

> >

> > It's only the lower esophagus. Is this the case for anyone else?

> >

> > They stretched me once but that lasted a week. I'm going to try

for

> > the botox injections. Has anyone had any dealings with this

> > procedure?

> >

> > Thanks for reading.

> >

> >

> > Sincerely,

> >

> > Dawn

> >

>

[Guest guest]

Hi Dawn, As I am not from the US I cannot recommend you drs. to see. I can only tell you to go see the best. Some names are mentioned quite a lot positively here on the board, especially Dr. Rice. As for the Botox. I have had 2 Botox treatments myself now (I am 34 y. old and don't have other health issues either). I use it as an in-between-option, as I need to wait for my upcoming surgery (an -ectomy, so my esophagus gets removed, therefore scar tissue built by Botox injections are not problem in my case). Getting Botox means getting scar tissue in your delicate area. Botox lasts only shortly, the effect might be great (it felt like honeymoon to me!), but it really doesn't last a life time (my first one only lasted a couple of weeks!). You cannot keep having Botox, as it works like anti-biotics, your body will resist it more and more after each treatment and in the end it won't

work at all anymore. It is said that it works about 5 to 6 times in a person. So wenn you are young (like you are!), it's not the solution in the long term. As you are looking for a long term solution, you might very well be facing surgery, to be honest. You wouldn't want to lessen your chances on a successfull surgery by getting scar tissue from Botox treatments... So be carefull and weigh your options... Go to find the best surgeon/doctor you can and don't listen to the first one you see. By the way, the same build up of scar tissue goes for dilatations... So just be carefull and go for the best. Good luck, Isabellap1xi3 <p1xi3@...> wrote: I live in the Portland Oregon area. Right now I go to Pacific Digestive. My doctor is Dr. Ferrin.I'm 38 and have no other health issues.I wish I could find something natural. Someone had a site about some B vitamin but he never replied to me.> >> > I was just diagnosed with achalasia. The only symptom I had was the > > difficulty swallowing foods. No heart burn, no rapid weight loss. > > It's at the point that I'm

regurgitating my food more frequently. I > > have to drink tons of water with no ice. When it gets real bad it > > goes out my nose. Sorry for being graphic but I figured everyone > > here would understand.> > > > I hate it. I don't like going to restaurants. First thing I look > for > > is a bathroom just in case. I'm thin but not because of this, not > > underweight just small. So of course I get "She must be bulimic"! > > Can you imagine being told that when all you want is to be able to > > eat a normal meal without having to keep trying? > > > > It's only the lower esophagus. Is this the case for anyone else? > > > > They stretched me once but that lasted a week. I'm going to try for > > the botox injections. Has anyone had any dealings with this > > procedure?> > > > Thanks for

reading.> > > > > > Sincerely,> > > > Dawn> >>

Building a website is a piece of cake. Small Business gives you all the tools to get online.

[Guest guest]

--Hi Dawn,

When I was diagnosed last year my dr put me on a prescription for high blood

pressure

( this weakens the les). It worked but I was having balance problems because I

don't have

high blood pressure. I read on one of the groups that Vitamin B 50 complex and

B 12

helps which it did for a while. The effect wears off(at least for me). I went

to dr. rice for a

hellar myotomy and am doing very well. I asked Dr. Rice about vitamin B and he

said that

for it to help you would need to be injected with large amounts to have an

affect. His

comment to me was, " Why would you want to do that to your body? " The B

vitamins did

buy me some time to decide what I wanted to do.

Hope this helps.

JoAnn

- In achalasia , " p1xi3 " <p1xi3@...> wrote:

>

> I live in the Portland Oregon area. Right now I go to Pacific

> Digestive. My doctor is Dr. Ferrin.

>

> I'm 38 and have no other health issues.

>

> I wish I could find something natural. Someone had a site about some

> B vitamin but he never replied to me.

>

>

>

> > >

> > > I was just diagnosed with achalasia. The only symptom I had was

> the

> > > difficulty swallowing foods. No heart burn, no rapid weight loss.

> > > It's at the point that I'm regurgitating my food more frequently.

> I

> > > have to drink tons of water with no ice. When it gets real bad it

> > > goes out my nose. Sorry for being graphic but I figured everyone

> > > here would understand.

> > >

> > > I hate it. I don't like going to restaurants. First thing I look

> > for

> > > is a bathroom just in case. I'm thin but not because of this, not

> > > underweight just small. So of course I get " She must be bulimic " !

> > > Can you imagine being told that when all you want is to be able

> to

> > > eat a normal meal without having to keep trying?

> > >

> > > It's only the lower esophagus. Is this the case for anyone else?

> > >

> > > They stretched me once but that lasted a week. I'm going to try

> for

> > > the botox injections. Has anyone had any dealings with this

> > > procedure?

> > >

> > > Thanks for reading.

> > >

> > >

> > > Sincerely,

> > >

> > > Dawn

> > >

> >

>

[Guest guest]

Dawn wrote:

> It's only the lower esophagus. Is this the case for anyone else?

>

The problems from achalasia are mostly in the lower esophagus, but even

so as food is backed up you can sometimes feel the food stop up higher.

> They stretched me once but that lasted a week. I'm going to try for

> the botox injections.

Did the GI who did the " stretching " use a balloon made for achalasia or

was it some other kind of dilator? The other kinds are too small to

offer much hope of symptom reduction. Even the achalasia balloons come

in different sizes. If he only used the small one it could be that a

bigger one would work. GIs often start small, too small, and work up to

bigger sizes. " Stretching " is known as dilatation. If successful a

dilation may provide years of good symptom reduction and may be the last

treatment a patient needs. I can think of one person on this achalasia

group that must be close to seven to ten years on her dilatation and is

not to the point of needing another. The Botox is only temporary. Few

people make it to two years before needing it again and they put up with

it getting slowly worse while they wait for it to reach a point where

they need it again. They also don't know when the next treatment won't

work at all. Contrary to what some have said here, and been told by " the

best " , you can have dilatations and Botox repeated any number of times.

There is no medical standard that says these treatments must be stopped

after one try. However there are a number of good surgeons who feel that

those treatments can make a myotomy more difficult to do and therefore

may result in the surgeon not doing a myotomy as well, or complete and

increase the risk of perforations from trying to cut completely through

the damaged muscle tissue. They don't say have only one of each of the

other treatments and then see us, they say don't have any of the others

if you don't have to. There are other surgeons who say have as many of

the other treatments as you want and then the myotomy will be more

difficult but we are good and can still do our jobs anyway. The myotomy

is generally seen as the best, most effective treatment in many cases,

but not all doctors agree even on that. Dilatation and Botox are for

some people the best treatments, depending on health, age and whether

the cost and time of a surgery can be afforded. One of the problems with

getting a less effective treatment is that the patient may decide to

live with the remaining symptoms and stop trying to get treatment to

improve them. If the symptoms have not been reduced enough the process

of degeneration of the esophagus may not have been reduced and dilation

(enlarging) may become a problem. With good symptom reduction the

diameter of the esophagus is often reduced and peristalsis may improve

even though it is unlikely to be completely recovered. If the esophagus

is allowed to get too out of shape a myotomy may no longer be an option

and an esophagectomy (removal) may be the only option left for symptom

improvement.

Whatever treatment you decide on be sure to have it done by someone that

has treated lots of achalasia patients. Don't get a dilatation from

someone that has done lots of them but only a few or none on achalasia

patients. The best way to improve your chances of good symptom reduction

without problems is to have a doctor with lots of experience with

achalasia. Travel far if you have to.

notan

[Guest guest]

I have to back everyone on this. Botox is tempory as is the streching. Please keep in mind that these types of proceedures can do the more to your E. Find a doctor who know sabout Achalasia ASAP and trust me there a too many docs out there who think they know what they are doing but could actually be making you worse. Let us know where you live and do not hesitate to ask questions. I glad you found us and I think we can all relate to your post. in VA

Shape in your own image. Join our Network Research Panel today!

[Guest guest]

I don't have high blood pressure either. The nitrates helped some but

not completely and I got terrible headaches from there. So bad I

would rather just hope for the best my food will go down.

I e-mailed this Doctor Vaezi. Wow what a great man. He called

me personally expaning the the options. I'm meeting with my doctor in

Oregon at Pacific Digestive on Tuesday to discuss what he thinks

should be done. I guess I will compare notes.

I'm ready to move on. It's been years that I've been suffering with

it. Being told it was stress was my first diagnosis.

It's great to find a group! Thanks everyone for being so informative.

> > > >

> > > > I was just diagnosed with achalasia. The only symptom I had

was

> > the

> > > > difficulty swallowing foods. No heart burn, no rapid weight

loss.

> > > > It's at the point that I'm regurgitating my food more

frequently.

> > I

> > > > have to drink tons of water with no ice. When it gets real

bad it

> > > > goes out my nose. Sorry for being graphic but I figured

everyone

> > > > here would understand.

> > > >

> > > > I hate it. I don't like going to restaurants. First thing I

look

> > > for

> > > > is a bathroom just in case. I'm thin but not because of this,

not

> > > > underweight just small. So of course I get " She must be

bulimic " !

> > > > Can you imagine being told that when all you want is to be

able

> > to

> > > > eat a normal meal without having to keep trying?

> > > >

> > > > It's only the lower esophagus. Is this the case for anyone

else?

> > > >

> > > > They stretched me once but that lasted a week. I'm going to

try

> > for

> > > > the botox injections. Has anyone had any dealings with this

> > > > procedure?

> > > >

> > > > Thanks for reading.

> > > >

> > > >

> > > > Sincerely,

> > > >

> > > > Dawn

> > > >

> > >

> >

>

[Guest guest]

I live in Oregon. I am currently seeing Dr.

Ferrion of Pacific Digestive in Clackamas Oregon.

--- katie gibbens <kt_gibbens@...> wrote:

> I have to back everyone on this. Botox is tempory as

> is the streching. Please keep in mind that these

> types of proceedures can do the more to your E. Find

> a doctor who know sabout Achalasia ASAP and trust me

> there a too many docs out there who think they know

> what they are doing but could actually be making you

> worse. Let us know where you live and do not

> hesitate to ask questions. I glad you found us and I

> think we can all relate to your post.

> in VA

>

>

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

> Shape in your own image. Join our Network

> Research Panel today!

________________________________________________________________________________\

____

oneSearch: Finally, mobile search

that gives answers, not web links.

http://mobile./mobileweb/onesearch?refer=1ONXIC

[Guest guest]

p1xi3 wrote:

> ... I e-mailed this Doctor Vaezi. Wow what a great man. ...

He is the coauthor, with Farnoosh Farrokhi, of a new article about

achalasia.

Idiopathic (primary) achalasia

Orphanet Journal of Rare Diseases 2007

http://www.ojrd.com/content/pdf/1750-1172-2-38.pdf

There are footnotes to papers that support what they says. Here is part

of the conclusion.

" Although it cannot be permanently cured, excellent palliation is available

in over 90% of patients. As a result of the advances in

pneumatic dilation and

laparoscopic Heller myotomy, most patients with achalasia can

now choose between

these two treatments.Although it cannot be permanently cured,

excellent palliation is available

in over 90% of patients. As a result of the advances in

pneumatic dilation and

laparoscopic Heller myotomy, most patients with achalasia can

now choose between

these two treatments. "

notan

[Guest guest]

Hello,

I have been recently diagonsed as well. For me, it's also only the

lower esophagus, and I am also fairly light on symptoms.

One thing to remember is there no definitive answer. The more I

learn about medicine, the more I learn that it is an art. Right now

I am trying to choose between a dilation and a Heller. Most likely

I will give the dilation a go first to see if it works, and go

Heller the second time around.

It sounds as though you are fairly young (38 if I remember

correctly) so the only thing that I understand after meeting with my

GI doc numerous times, a surgeon once, and receiving some advice

from peers of my relative (who is a pediatric intensivist with

friends in the GI department) is the only treatment really to rule

out is botox. It lasts only a short time, and scars up the muscle

around the lower sphincter to make a Heller much more difficult.

I have been told that some people need to be dilated more than once

(30-40 mm in increments of 5 if I remember correctly) in order to

get the dilation to work.

Good luck! I'm most certainly pulling for you.

On a side note, I bought a lottery ticket for the first time in my

life this week. I figure if I am lucky enough to score a disorder

that only 1/100,000 people get, I may as well give it a go!

Cheers!

> > > > >

> > > > > I was just diagnosed with achalasia. The only symptom I

had

> was

> > > the

> > > > > difficulty swallowing foods. No heart burn, no rapid

weight

> loss.

> > > > > It's at the point that I'm regurgitating my food more

> frequently.

> > > I

> > > > > have to drink tons of water with no ice. When it gets real

> bad it

> > > > > goes out my nose. Sorry for being graphic but I figured

> everyone

> > > > > here would understand.

> > > > >

> > > > > I hate it. I don't like going to restaurants. First thing

I

> look

> > > > for

> > > > > is a bathroom just in case. I'm thin but not because of

this,

> not

> > > > > underweight just small. So of course I get " She must be

> bulimic " !

> > > > > Can you imagine being told that when all you want is to be

> able

> > > to

> > > > > eat a normal meal without having to keep trying?

> > > > >

> > > > > It's only the lower esophagus. Is this the case for anyone

> else?

> > > > >

> > > > > They stretched me once but that lasted a week. I'm going

to

> try

> > > for

> > > > > the botox injections. Has anyone had any dealings with

this

> > > > > procedure?

> > > > >

> > > > > Thanks for reading.

> > > > >

> > > > >

> > > > > Sincerely,

> > > > >

> > > > > Dawn

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Hmmm, so what does that make me Notan? One in a

million and on my last leg? LOL

Just kidding,

Love,

MaggieSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Hello .

wrote:

> ... only 1/100,000 people get...

>

Actually, it is 1/10,000 people have it at any given time and 1/100,000

people will become new victims of it each year. Different studies come

up with different rates and these numbers are a generalization. There is

something interesting about the rates. We can conclude from them that

for every persons that becomes a new case there are nine who already

have achalasia. This means that one out of ten people with achalasia

will die each year, but before anyone freaks out at that let me explain

why. It is because as you get older the chance of getting achalasia goes

up. If you are a child your chance of getting it is low compared to

older people. There are enough elderly people among those with achalasia

that the death rate due to age is about one in ten. Cancer, pneumonia

and malnutrition problems related to achalasia may cause some deaths,

but even these are going to mostly be seen in the elderly patients. We

probably don't notice this age factor in this internet group because

many of the older patients would be much less likely to be on the

internet and in a group like this.

notan

[Guest guest]

NO MAGGIE, JUST ONE IN A MILLION XXXXXXLunaIam2@... wrote: Hmmm, so what does that make me Notan? One in a million and on my last leg? LOL Just kidding, Love, Maggie See what's new at AOL.com and Make AOL Your Homepage.

For ideas on reducing your carbon footprint visit For Good this month.

[Guest guest]

:

I remember you mentioned you weren't young but have forgotten your age.

h, I'm 77 and looking forward to 78. I was 69

when I had the first symptoms which was spasms. I

could have had some swallowing difficulties prior to

that, but never paid any attention to it. I just recall

drinking a lot of liquid with meals.

MaggieSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

>

> many of the older patients would be much less likely to be on the

> internet and in a group like this.

>

> notan

>

Hi notan,

I'll be 70 in December and it's been eight weeks since my myotomy. I

daresay it would have been easier twenty years ago though. I'be had

a

spastic esophagus for almost three decades so it's served me well.

I was due to go to CCF this Monday and Tuesday for the PH Test and

others but had a CTA scan yesterday. A week or so ago an Popliteal

Artery Aneurysm was found and it frightened me so I postponed all

myotomy tests until the aneurysm is taken care of. Now I almost wish

I'd made the trip as I'm starting to have food stick as it goes into

my stomach. Not a problem until I started eating meatloaf a few

days ago. Water gets it down though. I am also hearing gurgling

sounds now when I drink water. I had this problem previous to the

myotomy. I am getting tired of tests and hospitals but am thankful

the aneurysm was found.

Best wishes

annahlace fr PA

[Guest guest]

>

> Hmmm, so what does that make me Notan? One in a

> million and on my last leg? LOL

>

> Just kidding,

> Love,

> Maggie

>

>

>

> ************************************** See what's new at

http://www.aol.com

>

Maggie,

I remember you mentioned you weren't young but have forgotten your

age. I think you have some company though. I'm not on my last leg

(hopefully) but sometimes feel as if I were. I hope your problems

are

soon solved.

Best Wishes,

Soon to be 70

h from PA

[Guest guest]

>

> :

>

>

> I remember you mentioned you weren't young but have forgotten your

> age.

>

> h, I'm 77 and looking forward to 78. I was 69

> when I had the first symptoms which was spasms. I

> could have had some swallowing difficulties prior to

> that, but never paid any attention to it. I just recall

> drinking a lot of liquid with meals.

>

> Maggie

>

>

>

> ************************************** See what's new at

http://www.aol.com

>

Maggie, I thought you was in your early 70's. I hope you aren't

dealing with other problems due to aging. I know people who are

more physically active at 80 than I am now, it's all due to one's

genes I imagine. I also need to drink water when I eat certain foods

even with the myotomy. Hang in there.

Best wishes,

h in PA