New to the group

[Guest guest]

Hello all, I am new to the group and this is my first time posting.My name is

and i'm 26 years old. I was diagnosed with A in Dec 2011. My A progressed

pretty rapidly and I was not sure what was going on. I lost 80 lbs in 8 weeks

and was hospitalized for not being able to eat or drink anything whatsoever. My

case was pretty severe so the specialists I met with at UCLA medical center

decided that the Heller Myotomy w fundoplication was the best option for me. I

had my surgery Jan 12,2012 and was wondering what it's like after the surgery.

Does eating/drinking get easier? I know there might be many things I won't be

able to eat, but at this point I am lucky to be alive.I am currently on a soft

diet and am able to drink water/juice. Any advice or tips would be greatly

appreciated.

[Guest guest]

Hi ,

I am fairly new the group too (only been here since I got diagnosed last

September). I too just had my HM done (10 weeks ago), but sadly it didn't work.

Hope you have better success with yours. Like everyone else has said, there is

a wealth of useful information here and I am thankful for anything I can learn

on my journey with this horrible condition.

(Australia)

> >

> > Hello all, I am new to the group and this is my first time posting.My name

is and i'm 26 years old. I was diagnosed with A in Dec 2011. My A

progressed pretty rapidly and I was not sure what was going on. I lost 80 lbs in

8 weeks and was hospitalized for not being able to eat or drink anything

whatsoever. My case was pretty severe so the specialists I met with at UCLA

medical center decided that the Heller Myotomy w fundoplication was the best

option for me. I had my surgery Jan 12,2012 and was wondering what it's like

after the surgery. Does eating/drinking get easier? I know there might be many

things I won't be able to eat, but at this point I am lucky to be alive.I am

currently on a soft diet and am able to drink water/juice. Any advice or tips

would be greatly appreciated.

> >

>

[Guest guest]

Hello ,

 

Welcome to our group.  I think Dr. Kline is a GI at USC?  Have heard good

things about him and also DeMeester the top surgeon there is great for

achalasia.  I had my surgery in 2010 at UCLA under Dr. Maish, who is no

longer at UCLA but in Fremont Ca.  Who did your surgery?  Are you seeing Dr.

Kline for additional help of perhaps a dilation? 

 

Julee in Oregon (previously from So. Cali)

________________________________

From: " brandygarcia33@... " <brandygarcia33@...>

achalasia

Sent: Wednesday, January 25, 2012 3:15 PM

Subject: Re: Re: New to the group

 

Hello I'm new to the group, I've been following everyone stories. I was

diagnosed in Sept. 2010 I had my HM in April 2010, It was unsuccessful I have a

appt at USC with a Dr Kline. This has been a great group to follow cause I know

I'm not going crazy lol, and that there's lot of people going through the same

thing as me. Its hard I'm 34 and a mother of five, and feel like crap most of

the day. Thanks from Tehachapi,CA

Sent via BlackBerry by AT & T

Re: New to the group

Hi ,

I am fairly new the group too (only been here since I got diagnosed last

September). I too just had my HM done (10 weeks ago), but sadly it didn't work.

Hope you have better success with yours. Like everyone else has said, there is

a wealth of useful information here and I am thankful for anything I can learn

on my journey with this horrible condition.

(Australia)

> >

> > Hello all, I am new to the group and this is my first time posting.My name

is and i'm 26 years old. I was diagnosed with A in Dec 2011. My A

progressed pretty rapidly and I was not sure what was going on. I lost 80 lbs in

8 weeks and was hospitalized for not being able to eat or drink anything

whatsoever. My case was pretty severe so the specialists I met with at UCLA

medical center decided that the Heller Myotomy w fundoplication was the best

option for me. I had my surgery Jan 12,2012 and was wondering what it's like

after the surgery. Does eating/drinking get easier? I know there might be many

things I won't be able to eat, but at this point I am lucky to be alive.I am

currently on a soft diet and am able to drink water/juice. Any advice or tips

would be greatly appreciated.

> >

>

[Guest guest]

Welcome Kgrumpy19,

 

I also had my HM surgery at UCLA in 2010.  I continue to do well and can eat

fairly normal now.  After surgery I had to follow a soft food diet and slowly

transition for the first 30 days after surgery.  Remember that you still have

no movement in your esophagus, the surgery just helps the food to slip down and

make it through the spincter into the stomach...you should not have anymore

severe " backing up " or feeling stuck.  However, you should be careful not to

eat fast or eat thick amounts of food all at once, it could still get stuck.  I

usually eat slowly and chew well and try not to push it. 

 

I hope you can feel a difference now?  For me before surgery it was almost

impossible to eat much, it was exhausting to try and push food down all the time

and feel the regurg all the time.  Plus I had to always sleep on 2 pillows or I

would choke in the middle of the night.  Now however that is no longer the case

for me, I can sleep without any problems.  In my case the surgery worked great

and I hope that is the case for you too.  If things continue to get stuck or

you do not get relief, you may need additional help, sometimes a balloon

dilitation is in order for many.

 

Let us know how you recover, wishing you all the best. 

 

Julee in Oregon....(previously from So. Cali)

 

________________________________

From: kgrumpy19 <kgrumpy19@...>

achalasia

Sent: Tuesday, January 24, 2012 8:50 PM

Subject: New to the group

 

Hello all, I am new to the group and this is my first time posting.My name is

and i'm 26 years old. I was diagnosed with A in Dec 2011. My A progressed

pretty rapidly and I was not sure what was going on. I lost 80 lbs in 8 weeks

and was hospitalized for not being able to eat or drink anything whatsoever. My

case was pretty severe so the specialists I met with at UCLA medical center

decided that the Heller Myotomy w fundoplication was the best option for me. I

had my surgery Jan 12,2012 and was wondering what it's like after the surgery.

Does eating/drinking get easier? I know there might be many things I won't be

able to eat, but at this point I am lucky to be alive.I am currently on a soft

diet and am able to drink water/juice. Any advice or tips would be greatly

appreciated.

[Guest guest]

Yes Dr Kline is a GI doctor there, I had a dilation in Nov. But no luck! I'm

going to him to see if he can help me. Since my Dr. didn't remember after being

seen by him 9 times. And having a HM he tried to diagnose me with the achalasia

again I about crap my pants. His nurse just put her head down with shame because

my dr (Dr Gupta in Bakersfield) didn't realize that he's been treating me with

this for a year!!

Sent via BlackBerry by AT & T

Re: New to the group

Hi ,

I am fairly new the group too (only been here since I got diagnosed last

September). I too just had my HM done (10 weeks ago), but sadly it didn't work.

Hope you have better success with yours. Like everyone else has said, there is

a wealth of useful information here and I am thankful for anything I can learn

on my journey with this horrible condition.

(Australia)

> >

> > Hello all, I am new to the group and this is my first time posting.My name

is and i'm 26 years old. I was diagnosed with A in Dec 2011. My A

progressed pretty rapidly and I was not sure what was going on. I lost 80 lbs in

8 weeks and was hospitalized for not being able to eat or drink anything

whatsoever. My case was pretty severe so the specialists I met with at UCLA

medical center decided that the Heller Myotomy w fundoplication was the best

option for me. I had my surgery Jan 12,2012 and was wondering what it's like

after the surgery. Does eating/drinking get easier? I know there might be many

things I won't be able to eat, but at this point I am lucky to be alive.I am

currently on a soft diet and am able to drink water/juice. Any advice or tips

would be greatly appreciated.

> >

>

[Guest guest]

Thanks . It's so nice to know there are other people going through

something similar. I had all the symptoms of A.. Regurgitating food, horrible

spasms,heart burn and angina.It got to the point where i wsa unable to keep

water in. I had my HM on Jan 12,2012 at UCLA medical center. Dr. Lee and Dr.

Toland performed my surgery, it took about 5 hours. I am currently able to drink

fluids and eat soft foods. I haven't had any heartburn or angina since my

surgery. I seem to be doing well. Before the HM i was miserable and had to be

hospitalized due to dehydration and severe malnutrition. I've lost a total of

100lbs and have lost half of my hair. I take things one day at a time and am

glad to have found the support of the people n the group.

> >

> > Hello all, I am new to the group and this is my first time posting.My name

is and i'm 26 years old. I was diagnosed with A in Dec 2011. My A

progressed pretty rapidly and I was not sure what was going on. I lost 80 lbs in

8 weeks and was hospitalized for not being able to eat or drink anything

whatsoever. My case was pretty severe so the specialists I met with at UCLA

medical center decided that the Heller Myotomy w fundoplication was the best

option for me. I had my surgery Jan 12,2012 and was wondering what it's like

after the surgery. Does eating/drinking get easier? I know there might be many

things I won't be able to eat, but at this point I am lucky to be alive.I am

currently on a soft diet and am able to drink water/juice. Any advice or tips

would be greatly appreciated.

> >

>

[Guest guest]

,

 

I have been wondering about the hair loss. I didn't start loosing hair until

after my last dilation, almost 3 months ago. I used to have nice thick, medium

length hair but I would say I have lost a quarter of it so far maybe even more.

No signs of letting up yet. I only lost 35 pounds actually and gained 5-7 pounds

back since. I can't figure out why I keep losing it. My GP of 13 years has no

experience in dealing with anyone with Achalasia so he is perplexed as well. I

am 42 and not ready to loose all my hair yet. Did your doctor give you any

reasons for loosing it or any way to stop it? Now it is dried out and not so

attractive anymore. I am going to get it trimmed pretty soon.

 

By the way, I am happy to hear you gained ten pounds! I am now a carboholic

myself.

 

Kim A

________________________________

From: puddleriver13 <puddleriver13@...>

achalasia

Sent: Wednesday, January 25, 2012 9:21 AM

Subject: Re: New to the group

 

Wow, ! That *was* a roller-coaster! Welcome. Lots of experience and

kindness in this place.

Hard to say what your future holds, because we are each of us so different. I

lost 60 pounds In three months and I thought *that* was bad (and it was). Also

ended up in a cardiac ward for five days for the same reason. But *my* docs

didn't see that as an emergency. . . .

I'm four weeks post Heller, and the thing that's most improved is the regurging.

There's still some, but not much. And really, only if I've been pushing it.

But I haven't been able to get off of soft, either, though I've been cleared to

try. As soon's I do, everything sticks again. But I've also regained about 10

pounds, so obviously stuff IS going down and being processed. Just going to be

a waiting game, I guess. Very important for those of us who had the huge weight

losses is regaining optimum health as quickly as possible. Do some reading on

nutrition, and start working on eating as healthily as possible even with the

limitations of a soft diet. I was so starved/malnourished that I've lost about

half my hair -- feel like after chemo, though I haven't cut it all off (yet).

Got a healthy crop coming in, but it's very short and is only an inch or two

long, dating back to post first hospitalization when I simply made nutrition

(staying alive til

the operation!) my ONLY job. The old damaged hair, just keeps coming out. My

hair was to my waist, mostly worn in the Gibson Girl kinda bun. Now, what's

left of the longest hair is mid shoulder blade, and it getting shorter by the

day. Going to take close to five years to get my hair back to where it was. . .

.. If ever.

Some have kept improving for two or three years after, and some are back to

where they were before. For *most,* the improvement is so great, they don't

need the group any more, and they're just gone. Some are going to need tune-ups

-- a dilation or maybe even a redo. Frustrating, because we all want an ANSWER,

and there just aren't any one size fits all answers! There do seem to be a set

of foods that causes problems even post-Heller: rice, salads, eggs for some,

meats, popcorn. . . . And that said: it's *absolutely* individual! Best to

just go slow, stay slow, don't push it. Try one new thing at a time so you know

if that one is the problem, if there is one. This disease is absolutely a

lesson in learning to be here now, and acceptance. Learning to adapt, learning

flexibility will help the most. Stay away from pity parties: they'll set you

back the most. If you feel one coming on, check out this site:

http://www.ebpatient.com/howtopuree.html

Some questions for *you* lol! Boy or girl? Who did the surgery? Besides not

being able to eat, what other symptoms? Spasms? Regurging? (Always helpful here

to distinguish between vomiting which involves stomach contents, and

regurgitating, which involves food which hasn't made it to the tummy yet.)

Heartburn, before/after?

Again, welcome! Read the archives, there's a wealth of information there. Try

" post Heller " in the search box above. " Recovery " and " post op " are also good

search terms.

, West Virginia

>

> Hello all, I am new to the group and this is my first time posting.My name is

and i'm 26 years old. I was diagnosed with A in Dec 2011. My A progressed

pretty rapidly and I was not sure what was going on. I lost 80 lbs in 8 weeks

and was hospitalized for not being able to eat or drink anything whatsoever. My

case was pretty severe so the specialists I met with at UCLA medical center

decided that the Heller Myotomy w fundoplication was the best option for me. I

had my surgery Jan 12,2012 and was wondering what it's like after the surgery.

Does eating/drinking get easier? I know there might be many things I won't be

able to eat, but at this point I am lucky to be alive.I am currently on a soft

diet and am able to drink water/juice. Any advice or tips would be greatly

appreciated.

>

[Guest guest]

Hi,

Before my HM I could barely swallow anything, always regurgitating so I started

drinking a lot of nutritional drinks such as Ensure and Boost (the High Protein

kind). My nails and hair grew long. Now, I don't drink it that much and noticed

my nails are very fragile and my hair was shedding. So I starting taking Hair,

Skin and Nail (HSN)vitamins, Multi-Vitamins, Omega 3, Vitamin D and B12 along

with massaging the scalp and exercising. Hope this helps.

> >

> > Hello all, I am new to the group and this is my first time posting.My name

is and i'm 26 years old. I was diagnosed with A in Dec 2011. My A

progressed pretty rapidly and I was not sure what was going on. I lost 80 lbs in

8 weeks and was hospitalized for not being able to eat or drink anything

whatsoever. My case was pretty severe so the specialists I met with at UCLA

medical center decided that the Heller Myotomy w fundoplication was the best

option for me. I had my surgery Jan 12,2012 and was wondering what it's like

after the surgery. Does eating/drinking get easier? I know there might be many

things I won't be able to eat, but at this point I am lucky to be alive.I am

currently on a soft diet and am able to drink water/juice. Any advice or tips

would be greatly appreciated.

> >

>

>

>

>

>

[Guest guest]

Can't believe I popped in here and saw hair loss. My hair dresser actually

commented that my hair seemed thinner than usual and was coming out a lot while

she was washing it. I always thought I " shed " a lot but have been hit full

force with Achalasia since June. She told me to get my thyroid checked and take

vit D. Swallowing pills is hard and I really don't want to get my thryoid

checked after going through all of this with the A. I had a dilation 3 weeks

ago. I did fairly well but can tell I am progessing in the wrong direction. I

have the name of a surgeon but keep putting off calling. Part of me wonders if

this is as good as it gets and that the surgery won't help much. Once the

regurg comes back full force, I will have to go. Much better now than

predilation. Anyone else exhausted all the time? I have been exausted the past

6 weeks and wonder if it is related to nutrition. Lynne

> >

> > Hello all, I am new to the group and this is my first time posting.My name

is and i'm 26 years old. I was diagnosed with A in Dec 2011. My A

progressed pretty rapidly and I was not sure what was going on. I lost 80 lbs in

8 weeks and was hospitalized for not being able to eat or drink anything

whatsoever. My case was pretty severe so the specialists I met with at UCLA

medical center decided that the Heller Myotomy w fundoplication was the best

option for me. I had my surgery Jan 12,2012 and was wondering what it's like

after the surgery. Does eating/drinking get easier? I know there might be many

things I won't be able to eat, but at this point I am lucky to be alive.I am

currently on a soft diet and am able to drink water/juice. Any advice or tips

would be greatly appreciated.

> >

>

>

>

>

>

[Guest guest]

I haven't been on here for quite some time. I had a HM about 5 years ago and

thankfully everything has been great since. I occasionally though look at the

board – it was invaluable to me when first I was diagnosed and hopefully I gave

something back at the time. I was struck though today – and naturally felt for

- the lady who was talking about her son who is vomiting. I wish I had some

advice but given it is vomiting as distinct from regurgitation I really have

nothing useful to say except that " Notan " was then and seems still to be

extremely knowledgeable and well worth listening to. (Is it possible though his

vomiting is due to something other than Achalasia?) Anyway the reason I posted

was that that mum talked about her son having some Vit. B deficiencies and then

there was another post by someone here who said their hair was falling out and

the thread continued. What I can say then is that I take every day a Vit.B50

supplement. I read on some website at the time I was first diagnosed how

someone thought it would stave off Achalasia's worst effects. Now I don't

endorse that – I had a HM and I'm glad I did – but there is definitely something

there. Lack of Vit B can effect the nervous system and Achalasia certainly is a

symptom of that and alcohol, stress (as I had at the time in spades) etc. all

cause a deficiency in Vit.B and that of course as well as a possible inherent

inability to absorb Vit.B. Now I don't know if taking my Vit.B supplement has

helped me since my HM – though I have for the most part been fine – but I do

know that since taking it, my hair has stopped thinning out and where I still

have it, it now grows at an amazing rate and certainly my hair on top has also

stopped balding. I also used to feel tired all the time with my legs feeling

very heavy when I walked. Not so now. So whilst as I said I don't suggest like

the website I came across did that it is a substitute for surgery etc. but I

certainly think it has helped me. As for the dose and means of taking it, the

does I take is quite high B50 which is basically 50ug of all the Vit Bs from a

store in the UK: Holland & Barrett (though I believe it is a US company).

(Vit.5 should be taken all together as they all work together to help

absorption). I take the regular not the time release and I chew it (because

pills of course will just sit in the oesophagus) and then drink a glass of fruit

juice (as the pill tastes awful). A warning also: it will make your urine very

yellow (this is normal due to one of the Vit.Bs). The dose of course is in some

cases over 4000% of the recommended daily dose (although there is a B100 which I

do not take which is double the strength and feely available). This may seem

extreme but for the most part a lot is passed out in your urine anyway but

certainly as I said it seems to have helped presumably by ensuring that a higher

percentage is absorbed than would be otherwise. The one caveat is that the only

Vit B that can be harmful in excessive doses is Vit B6 but even at this dose, a

tablet a day is fine. That said I do over the weekends often break the tablet

in half and take the half dose.

So I hope the above helps.

> > >

> > > Hello all, I am new to the group and this is my first time posting.My name

is and i'm 26 years old. I was diagnosed with A in Dec 2011. My A

progressed pretty rapidly and I was not sure what was going on. I lost 80 lbs in

8 weeks and was hospitalized for not being able to eat or drink anything

whatsoever. My case was pretty severe so the specialists I met with at UCLA

medical center decided that the Heller Myotomy w fundoplication was the best

option for me. I had my surgery Jan 12,2012 and was wondering what it's like

after the surgery. Does eating/drinking get easier? I know there might be many

things I won't be able to eat, but at this point I am lucky to be alive.I am

currently on a soft diet and am able to drink water/juice. Any advice or tips

would be greatly appreciated.

> > >

> >

> >

> >

> >

> >

[Guest guest]

I found out that I had Hashimoto's Thyroiditis two months after my HM.

Hair loss is also a symptom of Hashimoto's Thyroiditis. However, people

say that Achalasia and Hashi's are not related.

marci in Nor Cal

[Guest guest]

thanks Ray i will try that! Kim

> >

> > yes .. you should be able to eat and drink much better. i had my myotomy in

sept. 2011.. i was down 70 pounds and could not even drink liquids. my hair was

coming out and i was finally really gettting scared. my mouth stayed dry ..

tongue was like a carpet.. i was taking iv bags ever week and more. and

potassium... my husband was even frightened and he is a MD... i am up about 25

pounds and really want to loose a little. i have had some challenges after the

myotomy.. took a bit to figure out what i could and could not eat. i still

cannot really eat bread.. and heavy stuff. like i can eat a hamburger sometimes,

but i find that i tend to over eat.. and that is when i sometimes have

trouble.,. i " thought " that i could not throw up but the other day i really got

on a  throw /regurg kick and got rid of my just eaten fish dinner. but was ok

afterwards. i think it was spasms... i realize that i have had this many many

years and did not know it .. i had just

> > adjusted my eating and ate carby stuff because it was what i COULD eat.

therefore i was fluffy... i really feel great now. i was in such a dark place. i

wanted to be able to drink mainly.. i used to think ,,, " MAN! i want to just

drink out of the water hose until i slosh "    and now i can.. you never think

about what a wonderous body and how intrically we are knit together until

something like this makes you aware of a small thing like a " swallowing tube! "

.... Be of good cheer.. things should get better and i really dont know what i

would have done with out my dear cheerful friends on this website. they

collectively have such a wealth of information and are so willing to help. It

has been a blessing to me. Kim Ellen in the Deep South

> >

> >

[Guest guest]

I actually had my hair dresser layer it a little more than usual and put more

mousse in it and a hair thickener that seems to make mine not look as thin as it

was. I keep experimenting with different foods for better nutrition and I eat a

lot of organic pureed soups with crackers. I have been regurging more lately too

and it really sucks but I think some days are just better than others!!!!

 

Kim A 

________________________________

From: lynnej73 <lynnej73@...>

achalasia

Sent: Thursday, February 2, 2012 4:04 PM

Subject: Re: New to the group

 

Can't believe I popped in here and saw hair loss. My hair dresser actually

commented that my hair seemed thinner than usual and was coming out a lot while

she was washing it. I always thought I " shed " a lot but have been hit full

force with Achalasia since June. She told me to get my thyroid checked and take

vit D. Swallowing pills is hard and I really don't want to get my thryoid

checked after going through all of this with the A. I had a dilation 3 weeks

ago. I did fairly well but can tell I am progessing in the wrong direction. I

have the name of a surgeon but keep putting off calling. Part of me wonders if

this is as good as it gets and that the surgery won't help much. Once the

regurg comes back full force, I will have to go. Much better now than

predilation. Anyone else exhausted all the time? I have been exausted the past

6 weeks and wonder if it is related to nutrition. Lynne

> >

> > Hello all, I am new to the group and this is my first time posting.My name

is and i'm 26 years old. I was diagnosed with A in Dec 2011. My A

progressed pretty rapidly and I was not sure what was going on. I lost 80 lbs in

8 weeks and was hospitalized for not being able to eat or drink anything

whatsoever. My case was pretty severe so the specialists I met with at UCLA

medical center decided that the Heller Myotomy w fundoplication was the best

option for me. I had my surgery Jan 12,2012 and was wondering what it's like

after the surgery. Does eating/drinking get easier? I know there might be many

things I won't be able to eat, but at this point I am lucky to be alive.I am

currently on a soft diet and am able to drink water/juice. Any advice or tips

would be greatly appreciated.

> >

>

>

>

>

>

[Guest guest]

I am starting to get more creative with food so I get more vitamins overall. I

am starting to eat different types of pate, or I shred chicken and add that to

dishes. I have been taking liquid B12 but once this is gone I am going to switch

to a sublingual B12 - I have noticed I have had more energy since I started

taking B12 and my hair doesn't seem to be coming out as much as it was. It is

still coming out more than it should but hopefully when I can get back on track

it will stop. I have been a shedder for a long time, with thicker an longer hair

this makes perfect sense but I guess for now this is just another wonderful side

effect of A!!

 

Thanks everyone for your tips! I am always up for advise!!

 

Kim A

________________________________

From: puddleriver13 <puddleriver13@...>

achalasia

Sent: Thursday, February 2, 2012 10:43 PM

Subject: Re: New to the group

 

Answers, lol! NOT in order. The LAST person I'd ask about nutrition is your

average MD, who had to take only one class in the subject to become a doctor.

By that standard, my ninth grade algebra class makes me a mathematician. . . .

Your hair is falling out/breaking off, long before you notice it's getting

thinner.

When you're losing weight against your will, your body is operating at a

calorie/nutrient/vitamin deficiency. It is *canalizing* itself.

The four months before my first hospitizaltion, I was running on average at

least 1750 calorie deficit. Which means of all the food I was eating, 50

calories were getting through. How long do doctors think one can live on 50

calories a day and NOT become malnourished? And to take up that deficit they

offer you a can of sugar water with oil, whey, and a vitamin pill. . . .

I've taken a B combo (either B50, or B100, or if I'm really stressed/pushed

B150)for about twenty years. Even with the amount of regurging I was doing

summer into fall, my urine never failed to be that wonderful florescent yellow,

so I know a good bit of it can be absorbed while still in the esophagus. So,

nope, I don't think the hair loss was a B deficiency.

More likely a protein deficiency. When you're starving, and know you are, you

are mostly pushing *calories* ~~ And the most caloric things we have available

to eat are the most empty of any nourishment. The calories can/will keep you

alive. But they won't keep you healthy. And hair is evidence of how healthy

you are or *have* been. I've got lotsa short stuff growing in. It's even

growing pretty fast. But it's still gonna take five years to get back down to

my waist. Alas.

Two ways to " lose " hair. You can lose it from the follicle, and/or with the

follicle. Or the hair can break off at a weak point after it's already out.

Our hair, like a chain, is only as strong as its weakest link. I'm used to

losing a lot of hair on brush outs. Have all my life. It's long, and right from

the follicle -- a follicle ready to go into rest. What I'm seeing now, and have

been for months, is hair broken off in much shorter pieces: at the weak link

from the summer.

Blenderized diets (the ones we're all pretty much eating just prior to

Heller/dilations and just after) tend to be extremely short on protein. I don't

particularly, for me and those I love, consider powdered protein anything

remotely ideal, so won't even go there. But after the wake up ER/hospital stay,

I really worked very hard on making sure I got enough. Mostly chicken pate, but

occasionally ham, hamburger, pork rib, liver, or tuna fish. I can see it in the

new hair: about two to three inches (which would date it back to about October).

Too short to do much with, but enough to raise hope that it's not gone forever,

lol!

Eat your protein kiddles!

> > >

> > > Hello all, I am new to the group and this is my first time posting.My name

is and i'm 26 years old. I was diagnosed with A in Dec 2011. My A

progressed pretty rapidly and I was not sure what was going on. I lost 80 lbs in

8 weeks and was hospitalized for not being able to eat or drink anything

whatsoever. My case was pretty severe so the specialists I met with at UCLA

medical center decided that the Heller Myotomy w fundoplication was the best

option for me. I had my surgery Jan 12,2012 and was wondering what it's like

after the surgery. Does eating/drinking get easier? I know there might be many

things I won't be able to eat, but at this point I am lucky to be alive.I am

currently on a soft diet and am able to drink water/juice. Any advice or tips

would be greatly appreciated.

> > >

> >

> >

> >

> >

> >

[Guest guest]

Hi Jeff and Welcome! 

 

I managed my achalasia for WAY to long and it did progress in stages in my case

and got worse over time.  Glad you have found Dr. Patti, I'm sure he can point

you in the right direction or even do your surgery???  He is top notch surgeon

from everything I have read. 

 

When I went to my consult with my surgeon, the main question that I asked her

was if I was a good candidate and she said yes.  I lived in So. Calif. at the

time and had surgery at UCLA.  that was in 2010 and I have no regrets the

surgery completely worked for me and I am doing great.  I never had dilitations

or botox, and the nitrates did not work well for me.  Over the years most of

the doctors had a huge lack of understanding about my problem so that is why it

took me many many years to figure it all out.

 

I slept on two pillows for 22yrs...and still would choke in the middle of the

night if my head tilted to the side.  I know how you feel and I hope that you

get " fixed " soon and can start enjoying a meal again without worry!  Keep us

posted, this is an amazing group!

 

Julee now from Oregon! 

________________________________

From: jtabb8 <jtabb8@...>

achalasia

Sent: Tuesday, April 3, 2012 8:23 AM

Subject: New to the Group

 

I have been following the group for about 6 months now but have just recently

joined. I am a 35 year old male and have been managing A for about 5 years now.

Nitrates have been the most effective treatment for me to be able to eat but

about 3 months ago, my condition progressed to include coughing at night from

fluids backing up into my chest. It's really scary to wake up in the middle of

the night choking and having a painful cough similar to a feeling of drowning.

I am also concerned with getting Pneumonia as I have learned that this is likely

to occur with fluids in the lungs. I have seen Dr. Karhillas of Northwestern in

the past but his office failed to call me back after recent attempts to get my

prescription refilled. I have since made an appointment with the Mayo Clinic

Rochester in 2 weeks. My hopes are for them to evaluate whether I will be a

good candidate for surgery. I also made an appointment today for a week from

Thursday with Dr.

Marco Patti of UIC. It appears that he is one of the best and I feel that the

surgery is the only option I have left since the medication I take only gives me

temporary relief for when I need to eat and doesn't help while I'm sleeping and

Botox and dilation have not been effective. Do you think I am getting too many

doctors involved? I am going to try and elevate my bed in hopes that I can

prevent the fluid backup until a long term plan is worked out. Thanks to all on

this site as the knowledge everyone provides makes managing this rare condition

a little easier.

Jeff

[Guest guest]

Jullee, I don't post often on this board but once in a while I do check in to

read the posts. I have had achalasia for the past 36 years. I have

megaesophagus which is twisted like a drane pipe. I did have an open heller

surgery many years ago which literally saved my life. I manage now with a

dialation perhaps once a year or more. But the choking at night is a major

concern I have for you. I myself have an adjustable bed and I sleep every

night semi sitting up. It prevents aspiration into the lungs. Last month I was

staying with my sister, helping her through chemo and sleeping on her guest bed.

Even using a wedge pillow I still woke up one night choking and aspirated very

badly. Next morning I woke up with a high fever and chills. I went downhill

fast. Withen two nights I was coughing up blood. Chest x-ray revealed double

aspiration pneumonia and I was put on strong antibiotics to fight the infection.

I felt like it was going to do me in this time. 3 weeks after completing the

antibiotics I continue to suffer with severe weakness and low blood pressure.

It makes me realize just how serious this issue is that we who suffer from

achalasia have to be VERY careful to sit up as high as we can as to not choke at

night. The adjustable bed is the best investment you will ever make. My

husband got used to sleeping beside me half sitting up and now he actually

prefers it. Gotta love him. Please look into getting an adjustable bed. I

think every one of us who suffer with achalasia need to take this seriously. If

we did not have antibiotics I for sure know I would have died, that is how bad

the pneumonia got. Sincerely, Joann

>

> Hi Jeff and Welcome! 

>  

> I managed my achalasia for WAY to long and it did progress in stages in my

case and got worse over time.  Glad you have found Dr. Patti, I'm sure he can

point you in the right direction or even do your surgery???  He is top notch

surgeon from everything I have read. 

>  

> When I went to my consult with my surgeon, the main question that I asked her

was if I was a good candidate and she said yes.  I lived in So. Calif. at the

time and had surgery at UCLA.  that was in 2010 and I have no regrets the

surgery completely worked for me and I am doing great.  I never had dilitations

or botox, and the nitrates did not work well for me.  Over the years most of

the doctors had a huge lack of understanding about my problem so that is why it

took me many many years to figure it all out.

>  

> I slept on two pillows for 22yrs...and still would choke in the middle of the

night if my head tilted to the side.  I know how you feel and I hope that you

get " fixed " soon and can start enjoying a meal again without worry!  Keep us

posted, this is an amazing group!

>  

> Julee now from Oregon! 

>

>

> ________________________________

> From: jtabb8 <jtabb8@...>

> achalasia

> Sent: Tuesday, April 3, 2012 8:23 AM

> Subject: New to the Group

>

>

>

>  

>

> I have been following the group for about 6 months now but have just recently

joined. I am a 35 year old male and have been managing A for about 5 years now.

Nitrates have been the most effective treatment for me to be able to eat but

about 3 months ago, my condition progressed to include coughing at night from

fluids backing up into my chest. It's really scary to wake up in the middle of

the night choking and having a painful cough similar to a feeling of drowning.

I am also concerned with getting Pneumonia as I have learned that this is likely

to occur with fluids in the lungs. I have seen Dr. Karhillas of Northwestern in

the past but his office failed to call me back after recent attempts to get my

prescription refilled. I have since made an appointment with the Mayo Clinic

Rochester in 2 weeks. My hopes are for them to evaluate whether I will be a

good candidate for surgery. I also made an appointment today for a week from

Thursday with Dr.

> Marco Patti of UIC. It appears that he is one of the best and I feel that

the surgery is the only option I have left since the medication I take only

gives me temporary relief for when I need to eat and doesn't help while I'm

sleeping and Botox and dilation have not been effective. Do you think I am

getting too many doctors involved? I am going to try and elevate my bed in

hopes that I can prevent the fluid backup until a long term plan is worked out.

Thanks to all on this site as the knowledge everyone provides makes managing

this rare condition a little easier.

>

> Jeff

>

>

>

>

>

[Guest guest]

Jeff welcome. I have tried to see Dr Soper or Dr Hungenss at Northwestern? I

have had meetings with them and am in contact with several people in the Chicago

area that have or have a family member with the disease.

I would agree about Dr Patti. Also if you could get to the Cleavland clinic that

is a good place to get treated. If you have any questions please feel free to

ask.

in Georgia

Sent from my iPhone

On Apr 3, 2012, at 11:23, " jtabb8 " <jtabb8@...> wrote:

> I have been following the group for about 6 months now but have just recently

joined. I am a 35 year old male and have been managing A for about 5 years now.

Nitrates have been the most effective treatment for me to be able to eat but

about 3 months ago, my condition progressed to include coughing at night from

fluids backing up into my chest. It's really scary to wake up in the middle of

the night choking and having a painful cough similar to a feeling of drowning. I

am also concerned with getting Pneumonia as I have learned that this is likely

to occur with fluids in the lungs. I have seen Dr. Karhillas of Northwestern in

the past but his office failed to call me back after recent attempts to get my

prescription refilled. I have since made an appointment with the Mayo Clinic

Rochester in 2 weeks. My hopes are for them to evaluate whether I will be a good

candidate for surgery. I also made an appointment today for a week from Thursday

with Dr. Marco Patti of UIC. It appears that he is one of the best and I feel

that the surgery is the only option I have left since the medication I take only

gives me temporary relief for when I need to eat and doesn't help while I'm

sleeping and Botox and dilation have not been effective. Do you think I am

getting too many doctors involved? I am going to try and elevate my bed in hopes

that I can prevent the fluid backup until a long term plan is worked out. Thanks

to all on this site as the knowledge everyone provides makes managing this rare

condition a little easier.

>

> Jeff

>

>

[Guest guest]

Hello Joann,

I share some of your experiences having suffered from achalasia for 33 years.

Doctors and radiologists have said I have a massively twisted, " mega esophagus "

as well.

My GIs failed to treat the aspiration.

My primary care physician, who seemed more adept at treating and understanding

achalasia and coordinating its care, did however; and used various aspirators

and inhalers to restore lung function after all the episodes of pneumonia and

infections. He practiced according to legitimate medical standards, consulted

with " experts " and documented progress that had allowed me to live a much better

life.

I used to prop the bed up, with some success. Lately, it isn't necessary due to

not sleeping for the past four months. No more primary doctor, so no more care

or restorative sleep - but a lot more pain and less weight. Isn't the DEA

wonderful?

Thank God I haven't had any more dilations since the last - with the largest

dilator the GI wanted, ripped and perforated the LES. The recollection was they

left me in radiology for hours, and I was only informed of the perforation when

I requisitioned records.

Jeff - you should get as much advice from as many doctors who truly understand

achalasia. Not all of us respond well to the typical treatments- which may

actually worse our conditions.

Steve

> >

> > Hi Jeff and Welcome! 

> >  

> > I managed my achalasia for WAY to long and it did progress in stages in my

case and got worse over time.  Glad you have found Dr. Patti, I'm sure he can

point you in the right direction or even do your surgery???  He is top notch

surgeon from everything I have read. 

> >  

> > When I went to my consult with my surgeon, the main question that I asked

her was if I was a good candidate and she said yes.  I lived in So. Calif. at

the time and had surgery at UCLA.  that was in 2010 and I have no regrets the

surgery completely worked for me and I am doing great.  I never had dilitations

or botox, and the nitrates did not work well for me.  Over the years most of

the doctors had a huge lack of understanding about my problem so that is why it

took me many many years to figure it all out.

> >  

> > I slept on two pillows for 22yrs...and still would choke in the middle of

the night if my head tilted to the side.  I know how you feel and I hope that

you get " fixed " soon and can start enjoying a meal again without worry!  Keep

us posted, this is an amazing group!

> >  

> > Julee now from Oregon! 

> >

> >

> > ________________________________

> > From: jtabb8 <jtabb8@>

> > achalasia

> > Sent: Tuesday, April 3, 2012 8:23 AM

> > Subject: New to the Group

> >

> >

> >

> >  

> >

> > I have been following the group for about 6 months now but have just

recently joined. I am a 35 year old male and have been managing A for about 5

years now. Nitrates have been the most effective treatment for me to be able to

eat but about 3 months ago, my condition progressed to include coughing at night

from fluids backing up into my chest. It's really scary to wake up in the

middle of the night choking and having a painful cough similar to a feeling of

drowning. I am also concerned with getting Pneumonia as I have learned that

this is likely to occur with fluids in the lungs. I have seen Dr. Karhillas of

Northwestern in the past but his office failed to call me back after recent

attempts to get my prescription refilled. I have since made an appointment with

the Mayo Clinic Rochester in 2 weeks. My hopes are for them to evaluate whether

I will be a good candidate for surgery. I also made an appointment today for a

week from Thursday with Dr.

> > Marco Patti of UIC. It appears that he is one of the best and I feel that

the surgery is the only option I have left since the medication I take only

gives me temporary relief for when I need to eat and doesn't help while I'm

sleeping and Botox and dilation have not been effective. Do you think I am

getting too many doctors involved? I am going to try and elevate my bed in

hopes that I can prevent the fluid backup until a long term plan is worked out.

Thanks to all on this site as the knowledge everyone provides makes managing

this rare condition a little easier.

> >

> > Jeff

> >

> >

> >

> >

> >

[Guest guest]

Just to clarify, in my situation after surgery I no longer choke at night and

can sleep on just one pillow.  Before surgery I slept on two pillows and

eventually purchased a nice wedge and used a pillow on top of it.  A special

bed would be optimal, thanks for sharing because those that do choke need to be

aware of what could happen. 

 

Julee in Oregon

________________________________

From: Montoya <medhelpinfo@...>

" achalasia " <achalasia >

Sent: Tuesday, April 3, 2012 5:31 PM

Subject: Re: New to the Group

 

Hi Jeff and Welcome! 

 

I managed my achalasia for WAY to long and it did progress in stages in my case

and got worse over time.  Glad you have found Dr. Patti, I'm sure he can point

you in the right direction or even do your surgery???  He is top notch surgeon

from everything I have read. 

 

When I went to my consult with my surgeon, the main question that I asked her

was if I was a good candidate and she said yes.  I lived in So. Calif. at the

time and had surgery at UCLA.  that was in 2010 and I have no regrets the

surgery completely worked for me and I am doing great.  I never had dilitations

or botox, and the nitrates did not work well for me.  Over the years most of

the doctors had a huge lack of understanding about my problem so that is why it

took me many many years to figure it all out.

 

I slept on two pillows for 22yrs...and still would choke in the middle of the

night if my head tilted to the side.  I know how you feel and I hope that you

get " fixed " soon and can start enjoying a meal again without worry!  Keep us

posted, this is an amazing group!

 

Julee now from Oregon! 

________________________________

From: jtabb8 <jtabb8@...>

achalasia

Sent: Tuesday, April 3, 2012 8:23 AM

Subject: New to the Group

 

I have been following the group for about 6 months now but have just recently

joined. I am a 35 year old male and have been managing A for about 5 years now.

Nitrates have been the most effective treatment for me to be able to eat but

about 3 months ago, my condition progressed to include coughing at night from

fluids backing up into my chest. It's really scary to wake up in the middle of

the night choking and having a painful cough similar to a feeling of drowning.

I am also concerned with getting Pneumonia as I have learned that this is likely

to occur with fluids in the lungs. I have seen Dr. Karhillas of Northwestern in

the past but his office failed to call me back after recent attempts to get my

prescription refilled. I have since made an appointment with the Mayo Clinic

Rochester in 2 weeks. My hopes are for them to evaluate whether I will be a

good candidate for surgery. I also made an appointment today for a week from

Thursday with Dr.

Marco Patti of UIC. It appears that he is one of the best and I feel that the

surgery is the only option I have left since the medication I take only gives me

temporary relief for when I need to eat and doesn't help while I'm sleeping and

Botox and dilation have not been effective. Do you think I am getting too many

doctors involved? I am going to try and elevate my bed in hopes that I can

prevent the fluid backup until a long term plan is worked out. Thanks to all on

this site as the knowledge everyone provides makes managing this rare condition

a little easier.

Jeff

[Guest guest]

Thank you, , Faith and !

- I'm actually in the Philadelphia area, and the doctors here seem very

experienced. I checked out your website- very helpful! Thank you! Your story is

incredible. I'm sorry you had to go through all of that. I'm thankful that mine

has come on quickly and will hopefully be resolved soon. I can't imagine years

of this!!

- you have had quite a journey as well. You are truly an inspiration! I

think about your story when I feel so awful from dehydration that I can't get

out of bed. I know that there is hope. Now that I am getting the BoTox tomorrow,

I am feeling giddy at the thought of drinking a glass of water on Thursday!

Anyway, I appreciate your words of support. I will update on Thursday after the

BoTox.

Take care,

> >

> > Hi everyone,

> >

> > I wanted to introduce myself. My name is and I am a 40-year-old

stay-at-home mom of a 5yo daughter and 3yo son. I was just diagnosed with

Achalasia in December after months of tests trying to figure out what was going

on (hope to NEVER have another Manometry test again)! I had my first symptoms

(feeling like I was eating too fast) a year ago and went downhill really fast. I

saw Dr. Dempsey at Penn in January and elected to hold off on the HM

surgery because I was still able to get some food down and thought I could

manage on my own- ha-talk about denial! Now, 3 months later, I can't get

anything down- food or liquids. I saw Dr. Falk on Friday and he agreed that

I needed treatment asap. He called Dr. Dempsey who said that he will get me into

his office this week. Hopefully I will have surgery within the next two weeks.

In the meantime, my urine is brown, I'm having dizzy spells, and am super

fatigued. I went to an urgent care facility yesterday and got an IV, and may

need more while I wait. Fun, fun!

> >

> > Anyway, I wanted to say how thankful I am that this site exists. I have been

reading your posts and have gotten so much great information from everyone. I

would be completely lost without having read all of your stories. Thank you so

much for sharing and I will do the same.

> >

> > Take care,

> >

> >

>