Re: My story-post Heller/Dor

[Guest guest]

Hi Lynn,

 

Glad to hear you are doing well, we both had the same surgeon, Dr. Maish did my

Hellers also....back in 2010 and it was fantastic results.  Up to that point I

was thinking I would die also....not being able to sustain food is awful.  I am

over a year and a half now and still doing fine no problems, no heartburn and

can eat almost anything these days. 

 

Sadly Dr. Maish has left UCLA and moved to Fremont area.  I also have moved

from So. Calif. to Oregon.  I was happy to read your post, I hope you continue

to eat well and start living your life now!!!!  It still feels like a dream, I

still smile when I eat, for 22yrs I suffered and could not find help. 

 

Take care and stay in touch with this wonderful group! 

 

Julee from Oregon

________________________________

From: ek.lynn <sanjoora@...>

achalasia

Sent: Friday, January 27, 2012 8:49 PM

Subject: My story-post Heller/Dor

 

Hi all,

I am one of the lucky ones that still lurks here because I realize that my

situation could change in the future.

In November of 2010 I started having problems swallowing food. Nothing to bad,

but occasionally I would have to wash my food down with water. I didn't think

much of it at the time and basically ignored it except I made it a point to have

a drink handy when eating just in case I would need it. About 2 months later I

started waking up in the middle of the night coughing and choking and realized

something was very wrong. It would happen as soon as I fell asleep and continue

throughout the night. I quickly learned that if I forced the food & liquid up

out of my E I could sleep, so this became my routine right before brushing my

teeth in the evening. I went to my GP doctor and told them what was going on

and they sent me to have a swallow study. I told them I could swallow fine, but

they insisted that I needed to have it checked out because to them it sounded

like a swallowing issue. The test involved a speech pathologist giving me

barium to swallow

and watching how it would go down. Test results were normal except they told

me I was a double swallower and that many people unconsciously double swallow

and it is nothing to worry about.

I went back to my GP and told him that something was wrong even tho the test

results were normal. I explained about the food coming up and he said it

sounded like a bad case of heartburn and to take Prilosec, but to make sure he

would order a barium swallow test. In the meantime, I was starting to have

trouble eating some foods like bread, potatoes, eggs, and so on. I was losing

about 3-5 lbs. each week which I thought was great because I could easily lose

about 20 pounds to be at my ideal weight. Around this time I also had my first

spasm when I was driving and I was convinced that I was having a heart attack

and almost lost control of my car because it came on so fast out of nowhere and

was this excruciating pain that moved from my chest up to my ears. It passed

after about 5 minutes and I immediately called my doctor because I thought I

should go to the ER or something because I was going to die! They told me to

come to the office where they

checked all my vitals and said I was fine. They didn't know what I experienced

but it wasn't a heart attack so I was relieved. From that point on I would have

one of these " episodes " about every 2 weeks but I knew to just wait it out and

it would pass.

In March I had the barium swallow test which showed that I had a mild case of

GERD, otherwise I was normal. My normal doctor was on vacation so I saw his NP

and told her that there was something very wrong and that it was not GERD. I

was still taking the Prilosec and things were getting worse. By this time I was

exhausted from lack of sleep, losing weight steadily, purposely regurging food

before going to bed, and I was eating a very limited diet because most food

would come back up. She sent me to a gastro guy and told him that I needed to

get in to see him ASAP for an endoscopy. I saw the gastro guy the next day and

told him all of my symptoms and he said it could be a number of things and to

come back in the morning for an endoscopy and a colonoscopy just to check

everything out. For the colonoscopy I had to drink a bunch of laxatives and

they said to mix it with Gatorade, any kind/flavor except orange or red so I

chose the blue one. I

followed all of their instructions, had the endo and colonoscopy the next

morning. The first thing the doctor said when I woke up was that I had an

unusual colored esophagus and that he noticed something while doing the endo

that might explain my problems. However he could not figure out why my E was

blue!Ilaughed and told him about the blue Gatorade. Apparently it sat in my E

all night and stained it blue. He said that explained it. He never really told

me what he suspected was wrong, but told me there was one more test he wanted me

to have to confirm his suspected diagnosis. I recall him saying, " Don't

worry-we can fix this " , which made me break out in tears. Finally someone

besides my family believed there was something wrong and there was a way to fix

the problem.

I had to wait for about a month for the test that the doctor wanted me to

have---a manometry. My insurance did not want to cover the test so I had to

wait while my doctor told them it was necessary and they agreed to cover it. I

had the test and only had a little difficulty swallowing the thingy, but

otherwise it was OK. About 2 weeks after the test I finally found out a name

for what ailed me-achalasia. I still do not know my numbers from the manometry

but I was told that basically I had no peristalsis in my E. The gastro guy went

over the options for treatment (surgery, dilation and meds---botox was never

mentioned) and basically convinced me I did not want to try dilation so that

left trying a calcium channel blocker because I was not ready for surgery yet.

He prescribed me Procardia and I took it about a week before I had to stop. I

have a bum ankle from an old injury that started aching so badly I could hardly

walk that came out of nowhere. I

looked up the side effects for the Procardia and sure enough one of them was

joint pain. So that left surgery. I went back to the gastro guy and told him I

was ready for surgery. At this point I had lost about 45 pounds (now

underweight), my hair was falling out, I wasn't sleeping and I knew I couldn't

keep this up for much longer. Because my symptoms had progressed so quickly

they also sent me in for a complete scan of my torso-heart, lungs, liver, etc.

just to make sure something else wasn't aggravating my system. Everything was

normal.

I was referred to Dr. Maish at UCLA and went to meet her in June. After

speaking with her I was ready to schedule surgery. I asked for her first

available date and was told that it would be July 7th. 7-7-11 was my lucky day.

I had the surgery and have not had any significant problems since then. I still

remember drinking cool water the first time after the surgery and feeling it go

all the way down to my stomach! I know I will never be normal but I am OK with

that. Two weeks after the surgery I resumed all my normal activities and was

told I could eat whatever I wanted, but to gradually test foods because I could

have problems with some. About a month after the surgery my energy levels were

back to normal. I have only had very mild spasms since the surgery and they now

occur very rarely, like maybe one a month. I can eat whatever I want, never had

a problem with heartburn, have gained back 36 pounds and hopefully by this July,

my one year

anniversary, the new hair that is growing back will be ready for a trim. I

still don't know why this happened and happened so fast, but I was told by Dr.

Maish that even though I was not aware if it, I had this problem for quite a

while because my E was extremely stretched out, which is another reason I

decided to go ahead with the surgery. About a year before my E problems started

I had a skin rash breakout that was diagnosed as psoriasis and I also found out

I am hypothyroid. I think it is very interesting that all of these new health

issues all occurred within a relatively short amount of time, and I suspect that

it is due to some kind of autoimmune disorder. Hopefully someday they will

figure it out so that they can help others diagnosed with this problem.

I am about 7 months post Heller/Dor and very happy to be here. I honestly

thought at one point in time that if something wasn't done to fix the problem

that I would die. Sure, there area few things that I can't eat, but once you

figure out what those things are you just avoid them. Compared to where I was a

year ago I am doing fantastic and looking forward to this new year!

Thank you all for sharing your experiences and knowledge. I read so many of the

posts and soaked up info to ask the doctor about, researched a surgeon, and

educated myself on what to expect before, during, and after the surgery.

Best,

Lynn

[Guest guest]

Lynn that's a great story - thank you for sharing it. I haven't had the surgery

yet, honestly have been putting it off because of posts that report increased

spasms and continued problems. Someone recently mentioned that many here are

those with less than favorable outcomes. That and your story helps put all this

in perspective. 

I'm glad you're doing well...enjoy!

Kim

________________________________

From: ek.lynn <sanjoora@...>

achalasia

Sent: Friday, January 27, 2012 11:49 PM

Subject: My story-post Heller/Dor

 

Hi all,

I am one of the lucky ones that still lurks here because I realize that my

situation could change in the future.

In November of 2010 I started having problems swallowing food. Nothing to bad,

but occasionally I would have to wash my food down with water. I didn't think

much of it at the time and basically ignored it except I made it a point to have

a drink handy when eating just in case I would need it. About 2 months later I

started waking up in the middle of the night coughing and choking and realized

something was very wrong. It would happen as soon as I fell asleep and continue

throughout the night. I quickly learned that if I forced the food & liquid up

out of my E I could sleep, so this became my routine right before brushing my

teeth in the evening. I went to my GP doctor and told them what was going on

and they sent me to have a swallow study. I told them I could swallow fine, but

they insisted that I needed to have it checked out because to them it sounded

like a swallowing issue. The test involved a speech pathologist giving me

barium to swallow

and watching how it would go down. Test results were normal except they told

me I was a double swallower and that many people unconsciously double swallow

and it is nothing to worry about.

I went back to my GP and told him that something was wrong even tho the test

results were normal. I explained about the food coming up and he said it

sounded like a bad case of heartburn and to take Prilosec, but to make sure he

would order a barium swallow test. In the meantime, I was starting to have

trouble eating some foods like bread, potatoes, eggs, and so on. I was losing

about 3-5 lbs. each week which I thought was great because I could easily lose

about 20 pounds to be at my ideal weight. Around this time I also had my first

spasm when I was driving and I was convinced that I was having a heart attack

and almost lost control of my car because it came on so fast out of nowhere and

was this excruciating pain that moved from my chest up to my ears. It passed

after about 5 minutes and I immediately called my doctor because I thought I

should go to the ER or something because I was going to die! They told me to

come to the office where they

checked all my vitals and said I was fine. They didn't know what I experienced

but it wasn't a heart attack so I was relieved. From that point on I would have

one of these " episodes " about every 2 weeks but I knew to just wait it out and

it would pass.

In March I had the barium swallow test which showed that I had a mild case of

GERD, otherwise I was normal. My normal doctor was on vacation so I saw his NP

and told her that there was something very wrong and that it was not GERD. I

was still taking the Prilosec and things were getting worse. By this time I was

exhausted from lack of sleep, losing weight steadily, purposely regurging food

before going to bed, and I was eating a very limited diet because most food

would come back up. She sent me to a gastro guy and told him that I needed to

get in to see him ASAP for an endoscopy. I saw the gastro guy the next day and

told him all of my symptoms and he said it could be a number of things and to

come back in the morning for an endoscopy and a colonoscopy just to check

everything out. For the colonoscopy I had to drink a bunch of laxatives and

they said to mix it with Gatorade, any kind/flavor except orange or red so I

chose the blue one. I

followed all of their instructions, had the endo and colonoscopy the next

morning. The first thing the doctor said when I woke up was that I had an

unusual colored esophagus and that he noticed something while doing the endo

that might explain my problems. However he could not figure out why my E was

blue!Ilaughed and told him about the blue Gatorade. Apparently it sat in my E

all night and stained it blue. He said that explained it. He never really told

me what he suspected was wrong, but told me there was one more test he wanted me

to have to confirm his suspected diagnosis. I recall him saying, " Don't

worry-we can fix this " , which made me break out in tears. Finally someone

besides my family believed there was something wrong and there was a way to fix

the problem.

I had to wait for about a month for the test that the doctor wanted me to

have---a manometry. My insurance did not want to cover the test so I had to

wait while my doctor told them it was necessary and they agreed to cover it. I

had the test and only had a little difficulty swallowing the thingy, but

otherwise it was OK. About 2 weeks after the test I finally found out a name

for what ailed me-achalasia. I still do not know my numbers from the manometry

but I was told that basically I had no peristalsis in my E. The gastro guy went

over the options for treatment (surgery, dilation and meds---botox was never

mentioned) and basically convinced me I did not want to try dilation so that

left trying a calcium channel blocker because I was not ready for surgery yet.

He prescribed me Procardia and I took it about a week before I had to stop. I

have a bum ankle from an old injury that started aching so badly I could hardly

walk that came out of nowhere. I

looked up the side effects for the Procardia and sure enough one of them was

joint pain. So that left surgery. I went back to the gastro guy and told him I

was ready for surgery. At this point I had lost about 45 pounds (now

underweight), my hair was falling out, I wasn't sleeping and I knew I couldn't

keep this up for much longer. Because my symptoms had progressed so quickly

they also sent me in for a complete scan of my torso-heart, lungs, liver, etc.

just to make sure something else wasn't aggravating my system. Everything was

normal.

I was referred to Dr. Maish at UCLA and went to meet her in June. After

speaking with her I was ready to schedule surgery. I asked for her first

available date and was told that it would be July 7th. 7-7-11 was my lucky day.

I had the surgery and have not had any significant problems since then. I still

remember drinking cool water the first time after the surgery and feeling it go

all the way down to my stomach! I know I will never be normal but I am OK with

that. Two weeks after the surgery I resumed all my normal activities and was

told I could eat whatever I wanted, but to gradually test foods because I could

have problems with some. About a month after the surgery my energy levels were

back to normal. I have only had very mild spasms since the surgery and they now

occur very rarely, like maybe one a month. I can eat whatever I want, never had

a problem with heartburn, have gained back 36 pounds and hopefully by this July,

my one year

anniversary, the new hair that is growing back will be ready for a trim. I

still don't know why this happened and happened so fast, but I was told by Dr.

Maish that even though I was not aware if it, I had this problem for quite a

while because my E was extremely stretched out, which is another reason I

decided to go ahead with the surgery. About a year before my E problems started

I had a skin rash breakout that was diagnosed as psoriasis and I also found out

I am hypothyroid. I think it is very interesting that all of these new health

issues all occurred within a relatively short amount of time, and I suspect that

it is due to some kind of autoimmune disorder. Hopefully someday they will

figure it out so that they can help others diagnosed with this problem.

I am about 7 months post Heller/Dor and very happy to be here. I honestly

thought at one point in time that if something wasn't done to fix the problem

that I would die. Sure, there area few things that I can't eat, but once you

figure out what those things are you just avoid them. Compared to where I was a

year ago I am doing fantastic and looking forward to this new year!

Thank you all for sharing your experiences and knowledge. I read so many of the

posts and soaked up info to ask the doctor about, researched a surgeon, and

educated myself on what to expect before, during, and after the surgery.

Best,

Lynn

[Guest guest]

Thanks Kim. I also saw the post mentioning that many in the group are here due

to the less than favorable outcomes, which is why I shared my story. I am sure

that many people's stories have a happy ending too, but the info doesn't make it

to the boards.

>

> Lynn that's a great story - thank you for sharing it. I haven't had the

surgery yet, honestly have been putting it off because of posts that report

increased spasms and continued problems. Someone recently mentioned that many

here are those with less than favorable outcomes. That and your story helps put

all this in perspective. 

>

> I'm glad you're doing well...enjoy!

>

> Kim

>

>

> ________________________________

> From: ek.lynn <sanjoora@...>

> achalasia

> Sent: Friday, January 27, 2012 11:49 PM

> Subject: My story-post Heller/Dor

>

>

>  

> Hi all,

> I am one of the lucky ones that still lurks here because I realize that my

situation could change in the future.

>

> In November of 2010 I started having problems swallowing food. Nothing to

bad, but occasionally I would have to wash my food down with water. I didn't

think much of it at the time and basically ignored it except I made it a point

to have a drink handy when eating just in case I would need it. About 2 months

later I started waking up in the middle of the night coughing and choking and

realized something was very wrong. It would happen as soon as I fell asleep and

continue throughout the night. I quickly learned that if I forced the food &

liquid up out of my E I could sleep, so this became my routine right before

brushing my teeth in the evening. I went to my GP doctor and told them what was

going on and they sent me to have a swallow study. I told them I could swallow

fine, but they insisted that I needed to have it checked out because to them it

sounded like a swallowing issue. The test involved a speech pathologist giving

me barium to swallow

> and watching how it would go down. Test results were normal except they told

me I was a double swallower and that many people unconsciously double swallow

and it is nothing to worry about.

>

> I went back to my GP and told him that something was wrong even tho the test

results were normal. I explained about the food coming up and he said it

sounded like a bad case of heartburn and to take Prilosec, but to make sure he

would order a barium swallow test. In the meantime, I was starting to have

trouble eating some foods like bread, potatoes, eggs, and so on. I was losing

about 3-5 lbs. each week which I thought was great because I could easily lose

about 20 pounds to be at my ideal weight. Around this time I also had my first

spasm when I was driving and I was convinced that I was having a heart attack

and almost lost control of my car because it came on so fast out of nowhere and

was this excruciating pain that moved from my chest up to my ears. It passed

after about 5 minutes and I immediately called my doctor because I thought I

should go to the ER or something because I was going to die! They told me to

come to the office where they

> checked all my vitals and said I was fine. They didn't know what I

experienced but it wasn't a heart attack so I was relieved. From that point on

I would have one of these " episodes " about every 2 weeks but I knew to just wait

it out and it would pass.

>

> In March I had the barium swallow test which showed that I had a mild case of

GERD, otherwise I was normal. My normal doctor was on vacation so I saw his NP

and told her that there was something very wrong and that it was not GERD. I

was still taking the Prilosec and things were getting worse. By this time I was

exhausted from lack of sleep, losing weight steadily, purposely regurging food

before going to bed, and I was eating a very limited diet because most food

would come back up. She sent me to a gastro guy and told him that I needed to

get in to see him ASAP for an endoscopy. I saw the gastro guy the next day and

told him all of my symptoms and he said it could be a number of things and to

come back in the morning for an endoscopy and a colonoscopy just to check

everything out. For the colonoscopy I had to drink a bunch of laxatives and

they said to mix it with Gatorade, any kind/flavor except orange or red so I

chose the blue one. I

> followed all of their instructions, had the endo and colonoscopy the next

morning. The first thing the doctor said when I woke up was that I had an

unusual colored esophagus and that he noticed something while doing the endo

that might explain my problems. However he could not figure out why my E was

blue!Ilaughed and told him about the blue Gatorade. Apparently it sat in my E

all night and stained it blue. He said that explained it. He never really told

me what he suspected was wrong, but told me there was one more test he wanted me

to have to confirm his suspected diagnosis. I recall him saying, " Don't

worry-we can fix this " , which made me break out in tears. Finally someone

besides my family believed there was something wrong and there was a way to fix

the problem.

>

> I had to wait for about a month for the test that the doctor wanted me to

have---a manometry. My insurance did not want to cover the test so I had to

wait while my doctor told them it was necessary and they agreed to cover it. I

had the test and only had a little difficulty swallowing the thingy, but

otherwise it was OK. About 2 weeks after the test I finally found out a name

for what ailed me-achalasia. I still do not know my numbers from the manometry

but I was told that basically I had no peristalsis in my E. The gastro guy went

over the options for treatment (surgery, dilation and meds---botox was never

mentioned) and basically convinced me I did not want to try dilation so that

left trying a calcium channel blocker because I was not ready for surgery yet.

He prescribed me Procardia and I took it about a week before I had to stop. I

have a bum ankle from an old injury that started aching so badly I could hardly

walk that came out of nowhere. I

> looked up the side effects for the Procardia and sure enough one of them was

joint pain. So that left surgery. I went back to the gastro guy and told him I

was ready for surgery. At this point I had lost about 45 pounds (now

underweight), my hair was falling out, I wasn't sleeping and I knew I couldn't

keep this up for much longer. Because my symptoms had progressed so quickly

they also sent me in for a complete scan of my torso-heart, lungs, liver, etc.

just to make sure something else wasn't aggravating my system. Everything was

normal.

>

> I was referred to Dr. Maish at UCLA and went to meet her in June. After

speaking with her I was ready to schedule surgery. I asked for her first

available date and was told that it would be July 7th. 7-7-11 was my lucky day.

I had the surgery and have not had any significant problems since then. I still

remember drinking cool water the first time after the surgery and feeling it go

all the way down to my stomach! I know I will never be normal but I am OK with

that. Two weeks after the surgery I resumed all my normal activities and was

told I could eat whatever I wanted, but to gradually test foods because I could

have problems with some. About a month after the surgery my energy levels were

back to normal. I have only had very mild spasms since the surgery and they now

occur very rarely, like maybe one a month. I can eat whatever I want, never had

a problem with heartburn, have gained back 36 pounds and hopefully by this July,

my one year

> anniversary, the new hair that is growing back will be ready for a trim. I

still don't know why this happened and happened so fast, but I was told by Dr.

Maish that even though I was not aware if it, I had this problem for quite a

while because my E was extremely stretched out, which is another reason I

decided to go ahead with the surgery. About a year before my E problems started

I had a skin rash breakout that was diagnosed as psoriasis and I also found out

I am hypothyroid. I think it is very interesting that all of these new health

issues all occurred within a relatively short amount of time, and I suspect that

it is due to some kind of autoimmune disorder. Hopefully someday they will

figure it out so that they can help others diagnosed with this problem.

>

> I am about 7 months post Heller/Dor and very happy to be here. I honestly

thought at one point in time that if something wasn't done to fix the problem

that I would die. Sure, there area few things that I can't eat, but once you

figure out what those things are you just avoid them. Compared to where I was a

year ago I am doing fantastic and looking forward to this new year!

>

> Thank you all for sharing your experiences and knowledge. I read so many of

the posts and soaked up info to ask the doctor about, researched a surgeon, and

educated myself on what to expect before, during, and after the surgery.

>

> Best,

> Lynn

>

>

>

>

>

[Guest guest]

I think we are both lucky to have had such a talented surgeon, and on top of

that I found her to be very knowledgeable and pleasant too.

When I read about people who have lived for decades with this condition and all

of the misdiagnosis's I realize how truly lucky I was to be diagnosed relatively

quickly, have the suregery and a successful result. I truly appreciate it and

this lovely group and I do plan to hang around.

Best to all

,

Lynn

>

> Hi Lynn,

>  

> Glad to hear you are doing well, we both had the same surgeon, Dr. Maish did

my Hellers also....back in 2010 and it was fantastic results.  Up to that point

I was thinking I would die also....not being able to sustain food is awful.  I

am over a year and a half now and still doing fine no problems, no heartburn and

can eat almost anything these days. 

>  

> Sadly Dr. Maish has left UCLA and moved to Fremont area.  I also have moved

from So. Calif. to Oregon.  I was happy to read your post, I hope you continue

to eat well and start living your life now!!!!  It still feels like a dream, I

still smile when I eat, for 22yrs I suffered and could not find help. 

>  

> Take care and stay in touch with this wonderful group! 

>  

> Julee from Oregon

>

>

> ________________________________

> From: ek.lynn <sanjoora@...>

> achalasia

> Sent: Friday, January 27, 2012 8:49 PM

> Subject: My story-post Heller/Dor

>

>

>

>  

>

> Hi all,

> I am one of the lucky ones that still lurks here because I realize that my

situation could change in the future.

>

> In November of 2010 I started having problems swallowing food. Nothing to

bad, but occasionally I would have to wash my food down with water. I didn't

think much of it at the time and basically ignored it except I made it a point

to have a drink handy when eating just in case I would need it. About 2 months

later I started waking up in the middle of the night coughing and choking and

realized something was very wrong. It would happen as soon as I fell asleep and

continue throughout the night. I quickly learned that if I forced the food &

liquid up out of my E I could sleep, so this became my routine right before

brushing my teeth in the evening. I went to my GP doctor and told them what was

going on and they sent me to have a swallow study. I told them I could swallow

fine, but they insisted that I needed to have it checked out because to them it

sounded like a swallowing issue. The test involved a speech pathologist giving

me barium to swallow

> and watching how it would go down. Test results were normal except they told

me I was a double swallower and that many people unconsciously double swallow

and it is nothing to worry about.

>

> I went back to my GP and told him that something was wrong even tho the test

results were normal. I explained about the food coming up and he said it

sounded like a bad case of heartburn and to take Prilosec, but to make sure he

would order a barium swallow test. In the meantime, I was starting to have

trouble eating some foods like bread, potatoes, eggs, and so on. I was losing

about 3-5 lbs. each week which I thought was great because I could easily lose

about 20 pounds to be at my ideal weight. Around this time I also had my first

spasm when I was driving and I was convinced that I was having a heart attack

and almost lost control of my car because it came on so fast out of nowhere and

was this excruciating pain that moved from my chest up to my ears. It passed

after about 5 minutes and I immediately called my doctor because I thought I

should go to the ER or something because I was going to die! They told me to

come to the office where they

> checked all my vitals and said I was fine. They didn't know what I

experienced but it wasn't a heart attack so I was relieved. From that point on

I would have one of these " episodes " about every 2 weeks but I knew to just wait

it out and it would pass.

>

> In March I had the barium swallow test which showed that I had a mild case of

GERD, otherwise I was normal. My normal doctor was on vacation so I saw his NP

and told her that there was something very wrong and that it was not GERD. I

was still taking the Prilosec and things were getting worse. By this time I was

exhausted from lack of sleep, losing weight steadily, purposely regurging food

before going to bed, and I was eating a very limited diet because most food

would come back up. She sent me to a gastro guy and told him that I needed to

get in to see him ASAP for an endoscopy. I saw the gastro guy the next day and

told him all of my symptoms and he said it could be a number of things and to

come back in the morning for an endoscopy and a colonoscopy just to check

everything out. For the colonoscopy I had to drink a bunch of laxatives and

they said to mix it with Gatorade, any kind/flavor except orange or red so I

chose the blue one. I

> followed all of their instructions, had the endo and colonoscopy the next

morning. The first thing the doctor said when I woke up was that I had an

unusual colored esophagus and that he noticed something while doing the endo

that might explain my problems. However he could not figure out why my E was

blue!Ilaughed and told him about the blue Gatorade. Apparently it sat in my E

all night and stained it blue. He said that explained it. He never really told

me what he suspected was wrong, but told me there was one more test he wanted me

to have to confirm his suspected diagnosis. I recall him saying, " Don't

worry-we can fix this " , which made me break out in tears. Finally someone

besides my family believed there was something wrong and there was a way to fix

the problem.

>

> I had to wait for about a month for the test that the doctor wanted me to

have---a manometry. My insurance did not want to cover the test so I had to

wait while my doctor told them it was necessary and they agreed to cover it. I

had the test and only had a little difficulty swallowing the thingy, but

otherwise it was OK. About 2 weeks after the test I finally found out a name

for what ailed me-achalasia. I still do not know my numbers from the manometry

but I was told that basically I had no peristalsis in my E. The gastro guy went

over the options for treatment (surgery, dilation and meds---botox was never

mentioned) and basically convinced me I did not want to try dilation so that

left trying a calcium channel blocker because I was not ready for surgery yet.

He prescribed me Procardia and I took it about a week before I had to stop. I

have a bum ankle from an old injury that started aching so badly I could hardly

walk that came out of nowhere. I

> looked up the side effects for the Procardia and sure enough one of them was

joint pain. So that left surgery. I went back to the gastro guy and told him I

was ready for surgery. At this point I had lost about 45 pounds (now

underweight), my hair was falling out, I wasn't sleeping and I knew I couldn't

keep this up for much longer. Because my symptoms had progressed so quickly

they also sent me in for a complete scan of my torso-heart, lungs, liver, etc.

just to make sure something else wasn't aggravating my system. Everything was

normal.

>

> I was referred to Dr. Maish at UCLA and went to meet her in June. After

speaking with her I was ready to schedule surgery. I asked for her first

available date and was told that it would be July 7th. 7-7-11 was my lucky day.

I had the surgery and have not had any significant problems since then. I still

remember drinking cool water the first time after the surgery and feeling it go

all the way down to my stomach! I know I will never be normal but I am OK with

that. Two weeks after the surgery I resumed all my normal activities and was

told I could eat whatever I wanted, but to gradually test foods because I could

have problems with some. About a month after the surgery my energy levels were

back to normal. I have only had very mild spasms since the surgery and they now

occur very rarely, like maybe one a month. I can eat whatever I want, never had

a problem with heartburn, have gained back 36 pounds and hopefully by this July,

my one year

> anniversary, the new hair that is growing back will be ready for a trim. I

still don't know why this happened and happened so fast, but I was told by Dr.

Maish that even though I was not aware if it, I had this problem for quite a

while because my E was extremely stretched out, which is another reason I

decided to go ahead with the surgery. About a year before my E problems started

I had a skin rash breakout that was diagnosed as psoriasis and I also found out

I am hypothyroid. I think it is very interesting that all of these new health

issues all occurred within a relatively short amount of time, and I suspect that

it is due to some kind of autoimmune disorder. Hopefully someday they will

figure it out so that they can help others diagnosed with this problem.

>

> I am about 7 months post Heller/Dor and very happy to be here. I honestly

thought at one point in time that if something wasn't done to fix the problem

that I would die. Sure, there area few things that I can't eat, but once you

figure out what those things are you just avoid them. Compared to where I was a

year ago I am doing fantastic and looking forward to this new year!

>

> Thank you all for sharing your experiences and knowledge. I read so many of

the posts and soaked up info to ask the doctor about, researched a surgeon, and

educated myself on what to expect before, during, and after the surgery.

>

> Best,

> Lynn

>

>

>

>

>

[Guest guest]

Glad to hear you are all doing well ladies. I am exactly 15 days post

Heller/Toupet and doing quite well.

I too have suffered gradually for about 3 years with a final diagnosis last

July. After my manometry -- results were zero motility

although my Esophagus was in good shape. What saved me was the fact that I

had to modify my diet because many foods would not pass.

I only lost about 25 lbs. which was good because I'm at my ideal weight

now.

Lynn, I'm surprised that after 2 weeks they allowed you to eat anything.

I'm was on a liquid diet for 1 week and now on a soft diet for 2 months.

No coffee, chocolate (that's killing me) and a list of other foods but

thats OK. I know my life will never be the same with A but I'm happy with

the outcome of the surgery.

For dinner I had salmon and went down quite well. Chew thoroughly, small

bites water etc. Hopefully things will stay positive down the road.

If anyone in this group is looking for a great surgeon and lives in the NY

Metro area his name is Ashutosh Kaul, MD. He is Director of Minimally

Invasive Surgery

at Westchester Medical Center, Valhalla, NY and Associate Professor at New

York Medical College. In practice for 25 years. He saved my life.

Best to all,

Wappingers Falls, NY

[Guest guest]

Hi ,

I was surprised too when told I could eat anything at week 2, but to proceed

with caution. For the first 2 weeks I was on a full liquid diet and when I went

in to see the doctor for the first f/u appt. I was expecting to graduate to a

soft diet. She totally surpised me by saying I could eat whatever I wanted and

also I was allowed to resume full activity w/o restriction. The steri strips

were still on a few of the incisions so I was very careful about lifting things

for a while, but other than that I did everything as before.

One thing I noticed in this group is that many doctors follow different diet

protocols post surgery. Some people are eating after 1 week, some after 2, some

after 4 and so on. Glad to hear you are doing well.

Lynn

>

> Glad to hear you are all doing well ladies. I am exactly 15 days post

> Heller/Toupet and doing quite well.

> I too have suffered gradually for about 3 years with a final diagnosis last

> July. After my manometry -- results were zero motility

> although my Esophagus was in good shape. What saved me was the fact that I

> had to modify my diet because many foods would not pass.

> I only lost about 25 lbs. which was good because I'm at my ideal weight

> now.

>

> Lynn, I'm surprised that after 2 weeks they allowed you to eat anything.

> I'm was on a liquid diet for 1 week and now on a soft diet for 2 months.

> No coffee, chocolate (that's killing me) and a list of other foods but

> thats OK. I know my life will never be the same with A but I'm happy with

> the outcome of the surgery.

> For dinner I had salmon and went down quite well. Chew thoroughly, small

> bites water etc. Hopefully things will stay positive down the road.

>

> If anyone in this group is looking for a great surgeon and lives in the NY

> Metro area his name is Ashutosh Kaul, MD. He is Director of Minimally

> Invasive Surgery

> at Westchester Medical Center, Valhalla, NY and Associate Professor at New

> York Medical College. In practice for 25 years. He saved my life.

>

> Best to all,

>

>

> Wappingers Falls, NY

>

>

>

[Guest guest]

Hey, Jenn ~~ Just kinda guessing here about the chocolate, but it's on the list

of no-no's for GERD (it relaxes the LES -- as does coffee), so since one of the

unknowns after surgery is whether or not acid reflux will be a problem, the

restriction may be to avoid a false diagnosis of post Heller induced GERD. But

that's being charitable on my part: Some doctors can't seem to keep straight the

difference between Achalasia and GERD. . . . At least that's been true in my

case. After my release from the hospital the first time (cardiac

unit/starvation), two of the four meds I was given scripts for were anti-GERD.

One of the actual anti-A meds, I was known to be allergic to (calcium channel

blocker); and the potassium prescription was a HUGE pill, bigger than the LES

opening, and and *if* I had taken it, would have just sat at that junction, and

burned the chit out of my esophagus. . . . We NEED, for our own survival to

question *everything*. . . .

Post-Heller, the dietitian brought me a sheet entitled " Diet for post Nissen

fundoplication " which is an anti-GERD surgery. . . . The Nissen is designed to

*increase* the tightness of the LES: which is exactly the opposite of the

Heller. . . .

I had to laugh about eating better after leaving: after I left my first

marriage, I was suddenly able to grow house plants! Up to that point every

single plant I brought home withered. . . . for ten years. . . .

Unhappiness/stress plays a huge part in our health. My only other BIG illness

of my life was Graves Disease, which is an auto immune disorder, and genetic.

But is *known* to be triggered by stress. Interestingly, both President Bush

and his wife Barbara have it. HERS was triggered when HE ran for President in

1980. HIS was triggered by having to run the Gulf War. MINE was triggered by

being an editor for a Big Eight accounting firm, lol!

You're vomiting in the morning? Or regurging?

And congrats on getting the Heller so quickly!

Cheers,

(in WV)

>

> Wow! An inspiring story! I am going for my HM in about 6 weeks. Amazingly

enough more food is going down now that I have left my husband lol. I eat about

one meal a day now plus my fluids.

>

> My q is for : why no chocolate?

>

> My doc doesn't delay eating for long, but I will be taking my time. I know I

am very good at growing scar tissue and I don't want to mess things up!

>

>

> Jenn in NB

> (Who just woke up and now needs to go to the (for the morning vomit)