Re: New Member - Old Disease

[Guest guest]

, welcome to the group. I am glad you found us and

sorry it took you so long. However, you were well into the

disease before this board was started.

I am glad to hear you are reading all the messages and in

order. I did that also but that was in mid 2001 and there

weren't many messages then. You were probably well into

the disease by then.

Just so you will know I believe they have perfected the

manometry some since you had yours. It still is not a

piece of cake, but it is not the torture it once was. I have

not heard the "corn flake study" mentioned before. If it

has been brought up here, I don't recall it.

Gee, I had almost forgotten the cola syrup remedy for the

spasms. It has not been brought up lately but I remember

the discussion back then. I don't know it if didn't prove to

work for most or those who did moved on and are not posting

anymore. Many here find gulping water (some warm, some

cold), popcicles, crackers, chips, etc. helpful with the spasms.

This is a great site and we are glad to have you as a member.

I believe you will have much to contribute to newcomers and

your attitude is great.

Maggie

Alabama

[Guest guest]

On 1/10/2006 at 2:38:47 P.M. Central Standard Time Ann wrote:

When I joined the Group I went back to the beginning and was surprised to see how this Board has changed. It is far less formal now, which I think is an extremely good thing.

Ann, you are so right, it has changed a lot and it is good.

The reason for that is, so many of us have continued to post

for several years and have become close friends. Who ever

said you had to see a face to build friendships?

Maggie

Alabama

[Guest guest]

Hi ,Welcome to the Group. I hope you have a lot of spare time if you are planning to read all those messages !! LOL When I joined the Group I went back to the beginning and was surprised to see how this Board has changed. It is far less formal now, which I think is an extremely good thing.I am the same age as you, but didn't start with A until I was 40. You have certainly been through a very dramatic time. I hope you enjoy our company. For me, it has been wonderful not to feel alone in this any more. Have you been battling on alone up till now?Best Wishes from Ann in England.>> I live on Long Island, a suburb of New York City.> > I have had achalasia since 1982 (at 32 years old) which started a > month after I went thru an extremely stressful period at work. > (Coincidence?) The very first symptom happened when I lay down after > dinner, only to find a "liquified" portion of my dinner regurgitated > up thru my nose! > > Symptoms progressed, like most of you. Sleepless nights walking the > hallways because lying down, even elevated, would resume the endless > coughing and choking; all the meals where I would choke and > regurgitate running off to the bathroom; the doctors not knowing what > to make of it. Exercise reduced symptoms for a while, but the > disease always "wins."> > I was nearly killed by a barium that confirmed achalasia, but the > doctor forgot that this achalasis patient was unable to get the > barium out of the esophagus. Hours later, struggling to breathe for > my life, the ER pumped the barium out of my esophagus.> > They were not through with me though. Needing their pound of flesh, > they submitted me at Univ of Penn to the manometry study (the so-> called gold standard of diagnosis). They tortured me and could not > get results because the sphincter was shut down. First time in my > life the doctor didn't have the balls to charge me for a procedure.> > I got the test to eliminate esophageal cancer as a possibility, then > was recommended for the balloon dilitation. First one failed, and I > was back 2 weeks later. Seems like they tell everyone its 80% > successful (but for how long?). I went 2 years, and then I was sent > down to s Hopkins when they told me (in NYC) that there was > nothing more they could do for me.> > At Hopkins I met some of the most incredible, caring and > knowledgeable doctors you can meet anywhere. They scoffed at the > manometery study, calling it unnecessary medically and not well > tolerated (to say the least) by the patients. What they do instead,> (and if nothing else I've said so far is important, to newly > suffering achalasia patients this will be), is to give suspected > achalasia patients a "corn flake" study.> > You sit in front of a gamma camera and eat corn flakes in milk, laced > with a radioactive substance). The camera will give a live picture > and take measurements of the progress of the corn flakes from the > esophagus to the stomach. This will be followed by a cleansing drink > of water and then a small bottle of Coca Cola. This then becomes the > base line for future measurements.> > More years, more balloon dilatations. Eventually no more help. Went > on nifedipine before each meal for a year, then the surgical option > could no longer be avoided. Those of you who waited long enough to > get the disease to have the laproscopic Heller Myotomy, consider > yourself blessed by my standards (circa Dec 1991). Laproscopic > Heller was done then, but surgeons were not very proficient with the > instruments yet.> > Major thoracic surgery, ICU, chest tubes, feeding tubes, rib > expansion and compression, lung deflation and rehab. 10 days with > nothing crossing my lips, and then ice chips seeming like a feast to > me. 12 days in the hospital seeing the cardiac patients come and go > was depressing enough, and then another 2 months to recover.> > 2 years later Hopkins contacted me to ask if I would participate in a > pilot program, under the auspices of the FDA, to test if Botox could > help people with Achalasia. "Sure" I said, "what do I have to do?"> "You will first have to have a mamometric study done, before > receiving Botox."> > I've taken enough of your time, and I thank you for reading to this > point. Skip ahead 14 years to the present, and I have not had > additional surgeries. Yes, I still have trouble, food gets stuck, I > gasp for air, I get the "heart attack" level esophageal spasms. > There are so many other diseases out there worse than ours, and yet > every time we eat we are reminded of what we can't do as well as we > once took for granted.> > I just discovered this website, and I thank all of you who have been > so forthcoming about your condition. I have completed reading the > first 175 messages (to August 2000) of over 30,000. I intend on > reading every message, in order. As much as I think I know, there is > no substitute for learning from others who are in my position. While > I drink Diet Coke (or any carbonated beverage) to kill the esophageal > spasms the moment they start, or nifedipine under the tongue, reading > about cola syrup as an alternative is something I was unaware of.> > This is a great site, the message board, data bases, polls and chat. > I hope to share future communications with many of you.> > >

[Guest guest]

Hi Maggie,>> >> Thank you for the kind welcome! Since I'm reading from the beginning, perhaps by people who no longer post to the board, there were some ideas expressed then that might have gotten "lost" over time. Before I went out to dinner tonight (to the buffet I might add) I stopped in at a CVS pharmacy (precisely following the directions of Carol, who was the predominant poster in the beginning) and asked for the Cola syrup in the appropriate aisle, and received blank expressions in return. Carol's alternative suggestion was that if they did not have it in the aisle, go to the prescription pharmacy where they will surely have it. The pharmacist suggested that I take some Coca Cola, leave it out until the carbonation exits the formula and voila! I will then have cola syrup! I'm not really a do-it-yourselfer. Just someone, please sell me the darn cola syrup! I'm doing pretty well with the carbonation & nifedipine when it comes to the killer spasms and food getting stuck, but tonight I really wanted my cola syrup (to see if its "magical" powers to clear esophaguses everywhere from stuck food to heavy duty spasms could actually work!)>> >>Maggie, what I find very interesting about achalasia (but sometimes I wish I didn't), is that there are so many home grown remedies for this disease, but invariably there is no universal "fixer-upper" that works for everyone. I use carbonation & nifedipine for eating better and for the esophageal spasms, while others won't go near carbonation.>> >>the corn flake study you mentioned is described in Post #172 as follows>> >> , welcome to the group. I am glad you found us and> sorry it took you so long. However, you were well into the> disease before this board was started.> > I am glad to hear you are reading all the messages and in> order. I did that also but that was in mid 2001 and there> weren't many messages then. You were probably well into> the disease by then.> > Just so you will know I believe they have perfected the> manometry some since you had yours. It still is not a > piece of cake, but it is not the torture it once was. I have> not heard the "corn flake study" mentioned before. If it> has been brought up here, I don't recall it.> > Gee, I had almost forgotten the cola syrup remedy for the> spasms. It has not been brought up lately but I remember> the discussion back then. I don't know it if didn't prove to> work for most or those who did moved on and are not posting> anymore. Many here find gulping water (some warm, some> cold), popcicles, crackers, chips, etc. helpful with the spasms.> > This is a great site and we are glad to have you as a member.> I believe you will have much to contribute to newcomers and> your attitude is great.> > Maggie> Alabama>

[Guest guest]

Hi Ann!The only time I felt truly alone during the course of this disease was when I had the symptoms, but no name. Spending sleepless nights for 6 months, and fighting exhaustion during the day left me wasted, and nobody could understand. Having a diagnosis put me on the map (albeit a very small one for this disease).Curiously, while estimates vary from one person in 15,000 to 1 in 100,000 who have the disease, the couple we used to go out to dinner with every week...the husband came down with it at age 58. We were able to see who could eat slower! I had the "open" Heller, while he had the lap Heller (12 years after my surgery). He's about 5 years older than me, and started with the illness at age 58, compared to my being 32. He now has Barrett's. Not sure what action he will take next.Add in my connection to "Third Aid.com" and I haven't felt alone about this disease for a very long time. I look forward to being an active member here while constantly updating myself for more recent advancements. Thank you for your well wishes! > >> > I live on Long Island, a suburb of New York City.> > > > I have had achalasia since 1982 (at 32 years old) which started a > > month after I went thru an extremely stressful period at work. > > (Coincidence?) The very first symptom happened when I lay down after > > dinner, only to find a "liquified" portion of my dinner regurgitated > > up thru my nose! > > > > Symptoms progressed, like most of you. Sleepless nights walking the > > hallways because lying down, even elevated, would resume the endless > > coughing and choking; all the meals where I would choke and > > regurgitate running off to the bathroom; the doctors not knowing what > > to make of it. Exercise reduced symptoms for a while, but the > > disease always "wins."> > > > I was nearly killed by a barium that confirmed achalasia, but the > > doctor forgot that this achalasis patient was unable to get the > > barium out of the esophagus. Hours later, struggling to breathe for > > my life, the ER pumped the barium out of my esophagus.> > > > They were not through with me though. Needing their pound of flesh, > > they submitted me at Univ of Penn to the manometry study (the so-> > called gold standard of diagnosis). They tortured me and could not > > get results because the sphincter was shut down. First time in my > > life the doctor didn't have the balls to charge me for a procedure.> > > > I got the test to eliminate esophageal cancer as a possibility, then > > was recommended for the balloon dilitation. First one failed, and I > > was back 2 weeks later. Seems like they tell everyone its 80% > > successful (but for how long?). I went 2 years, and then I was sent > > down to s Hopkins when they told me (in NYC) that there was > > nothing more they could do for me.> > > > At Hopkins I met some of the most incredible, caring and > > knowledgeable doctors you can meet anywhere. They scoffed at the > > manometery study, calling it unnecessary medically and not well > > tolerated (to say the least) by the patients. What they do instead,> > (and if nothing else I've said so far is important, to newly > > suffering achalasia patients this will be), is to give suspected > > achalasia patients a "corn flake" study.> > > > You sit in front of a gamma camera and eat corn flakes in milk, laced > > with a radioactive substance). The camera will give a live picture > > and take measurements of the progress of the corn flakes from the > > esophagus to the stomach. This will be followed by a cleansing drink > > of water and then a small bottle of Coca Cola. This then becomes the > > base line for future measurements.> > > > More years, more balloon dilatations. Eventually no more help. Went > > on nifedipine before each meal for a year, then the surgical option > > could no longer be avoided. Those of you who waited long enough to > > get the disease to have the laproscopic Heller Myotomy, consider > > yourself blessed by my standards (circa Dec 1991). Laproscopic > > Heller was done then, but surgeons were not very proficient with the > > instruments yet.> > > > Major thoracic surgery, ICU, chest tubes, feeding tubes, rib > > expansion and compression, lung deflation and rehab. 10 days with > > nothing crossing my lips, and then ice chips seeming like a feast to > > me. 12 days in the hospital seeing the cardiac patients come and go > > was depressing enough, and then another 2 months to recover.> > > > 2 years later Hopkins contacted me to ask if I would participate in a > > pilot program, under the auspices of the FDA, to test if Botox could > > help people with Achalasia. "Sure" I said, "what do I have to do?"> > "You will first have to have a mamometric study done, before > > receiving Botox."> > > > I've taken enough of your time, and I thank you for reading to this > > point. Skip ahead 14 years to the present, and I have not had > > additional surgeries. Yes, I still have trouble, food gets stuck, I > > gasp for air, I get the "heart attack" level esophageal spasms. > > There are so many other diseases out there worse than ours, and yet > > every time we eat we are reminded of what we can't do as well as we > > once took for granted.> > > > I just discovered this website, and I thank all of you who have been > > so forthcoming about your condition. I have completed reading the > > first 175 messages (to August 2000) of over 30,000. I intend on > > reading every message, in order. As much as I think I know, there is > > no substitute for learning from others who are in my position. While > > I drink Diet Coke (or any carbonated beverage) to kill the esophageal > > spasms the moment they start, or nifedipine under the tongue, reading > > about cola syrup as an alternative is something I was unaware of.> > > > This is a great site, the message board, data bases, polls and chat. > > I hope to share future communications with many of you.> > > > > >>

[Guest guest]

On 1/11/2006 at 8:12:46 A.M. Central Standard Time you wrote:

Maggie, what I find very interesting about achalasia (but sometimes I wish I didn't), is that there are so many home grown remedies for this disease, but invariably there is no universal "fixer-upper" that works for everyone.

Yes, we have discovered that too. It is strange to say

the least. Maybe that is why they can't find a cure....while we

are all alike, we still are very different. For instance, I can't

drink carbonated drinks. It comes right back up. Many here

couldn't live without it. Some can stop spasms with eating

crackers....some can't. I can almost always stop mine by

gulping water, usually ice water, but any water would do for

me. I am never without water it.. I carry water as if it was

part of my body. I can't eat ice cream, others can.

Wally mentioned in one email that in some of the earlier post

people were trying l'-arginine. Some on the board tried it

and got good results in stopping the spasms, but it did nothing

for the progression of the disease that I am aware of.

You're right the flakes were mentioned and I just didn't

remember that when you wrote about it. Thanks for

bringing that to my attention. Also if you find the cola

syrup, be sure to let us know how it works. I don't recall

how that turned out either.

Yes, most of us have learned to be very pushy in getting

treatment. If we don't sometimes we are put off far too long.

The first doctor I saw at UAB (not the one treating me now)

said after the diagnosis "come back in a couple months." I

almost screamed, and at that he informed me that they did

not consider this an emergency. My response was "maybe you

don't but I do, were you not listening when I told you that I

couldn't keep down either food or water."? Anyway, I was

lucky, strangely enough the girl doing the scheduling had

achalasia. I got an appointment with the doctor who is

treating me now right away, and have had no problems

getting appointments since. He is the achalasia specialist

there and better understood.

We're glad you're going to stick around, as I said before

you'll be a real asset to the board.

Maggie

Alabama

[Guest guest]

- I have been sick for a long time, but only known what disease it was for the past few months. You have been through so much, and your experiences will help others just beginning this journey. I also had a rough time with the barium study, and was trying to complete my pre op testing while vomiting into a nearby trash can. I don't think other patients were comfortable being around me, and the staff couldn't get me out of there quick enough! Welcome to the group! JoRICHARD <cynmark24@...> wrote: I live on Long Island, a suburb of New York City.I have had achalasia since 1982 (at 32 years old) which started a month after I went thru an extremely stressful period at work. (Coincidence?) The very first symptom happened when I lay down after dinner, only to find a

"liquified" portion of my dinner regurgitated up thru my nose! Symptoms progressed, like most of you. Sleepless nights walking the hallways because lying down, even elevated, would resume the endless coughing and choking; all the meals where I would choke and regurgitate running off to the bathroom; the doctors not knowing what to make of it. Exercise reduced symptoms for a while, but the disease always "wins."I was nearly killed by a barium that confirmed achalasia, but the doctor forgot that this achalasis patient was unable to get the barium out of the esophagus. Hours later, struggling to breathe for my life, the ER pumped the barium out of my esophagus.They were not through with me though. Needing their pound of flesh, they submitted me at Univ of Penn to the manometry study (the so-called gold standard of diagnosis). They tortured me and could not get results because the

sphincter was shut down. First time in my life the doctor didn't have the balls to charge me for a procedure.I got the test to eliminate esophageal cancer as a possibility, then was recommended for the balloon dilitation. First one failed, and I was back 2 weeks later. Seems like they tell everyone its 80% successful (but for how long?). I went 2 years, and then I was sent down to s Hopkins when they told me (in NYC) that there was nothing more they could do for me.At Hopkins I met some of the most incredible, caring and knowledgeable doctors you can meet anywhere. They scoffed at the manometery study, calling it unnecessary medically and not well tolerated (to say the least) by the patients. What they do instead,(and if nothing else I've said so far is important, to newly suffering achalasia patients this will be), is to give suspected achalasia patients a "corn flake"

study.You sit in front of a gamma camera and eat corn flakes in milk, laced with a radioactive substance). The camera will give a live picture and take measurements of the progress of the corn flakes from the esophagus to the stomach. This will be followed by a cleansing drink of water and then a small bottle of Coca Cola. This then becomes the base line for future measurements.More years, more balloon dilatations. Eventually no more help. Went on nifedipine before each meal for a year, then the surgical option could no longer be avoided. Those of you who waited long enough to get the disease to have the laproscopic Heller Myotomy, consider yourself blessed by my standards (circa Dec 1991). Laproscopic Heller was done then, but surgeons were not very proficient with the instruments yet.Major thoracic surgery, ICU, chest tubes, feeding tubes, rib expansion and compression, lung

deflation and rehab. 10 days with nothing crossing my lips, and then ice chips seeming like a feast to me. 12 days in the hospital seeing the cardiac patients come and go was depressing enough, and then another 2 months to recover.2 years later Hopkins contacted me to ask if I would participate in a pilot program, under the auspices of the FDA, to test if Botox could help people with Achalasia. "Sure" I said, "what do I have to do?""You will first have to have a mamometric study done, before receiving Botox."I've taken enough of your time, and I thank you for reading to this point. Skip ahead 14 years to the present, and I have not had additional surgeries. Yes, I still have trouble, food gets stuck, I gasp for air, I get the "heart attack" level esophageal spasms. There are so many other diseases out there worse than ours, and yet every time we eat we are reminded of what we can't do

as well as we once took for granted.I just discovered this website, and I thank all of you who have been so forthcoming about your condition. I have completed reading the first 175 messages (to August 2000) of over 30,000. I intend on reading every message, in order. As much as I think I know, there is no substitute for learning from others who are in my position. While I drink Diet Coke (or any carbonated beverage) to kill the esophageal spasms the moment they start, or nifedipine under the tongue, reading about cola syrup as an alternative is something I was unaware of.This is a great site, the message board, data bases, polls and chat. I hope to share future communications with many of you.

Photos – Showcase holiday pictures in hardcover Photo Books. You design it and we’ll bind it!

[Guest guest]

Hi - so glad you found us, welcome!!

> I live on Long Island, a suburb of New York City.

What part? I lived on LI- Ronkonkoma until age 12 and then in the

Albany area until 11 years ago, I now live in Virginia

Not everyone would agree but I always feel you can NEVER have too

many New Yorkers around!!

>

> I have had achalasia since 1982 (at 32 years old) which started a

> month after I went thru an extremely stressful period at work.

> (Coincidence?) The very first symptom happened when I lay down

after

> dinner, only to find a " liquified " portion of my dinner

regurgitated

> up thru my nose!

Me too. I was diagnosed in 1982, at age 15, but had been having

symptoms for about 3 years. Definately feel that there were some

stressors in my life that 'caused' it to happen.

>

> (and if nothing else I've said so far is important, to newly

> suffering achalasia patients this will be), is to give suspected

> achalasia patients a " corn flake " study.

Never had corn flakes but at a military hospital here, I did get a

barium pill - which I'd never had before or since and I did a

marshmallow swallow - same concept - they take a piece of

marshmallow, dip it in barium and I was to swallow it without chewing

much. I guess they did it to see how the walls of my E were moving.

It was very interesting to watch.

> Major thoracic surgery, ICU, chest tubes, feeding tubes, rib

> expansion and compression, lung deflation and rehab. 10 days with

> nothing crossing my lips, and then ice chips seeming like a feast

to

> me. 12 days in the hospital seeing the cardiac patients come and

go

> was depressing enough, and then another 2 months to recover.

UGH - was that the norm or did you have some kind of complication? I

had the open Heller in 1989 and spent 6 days in the hospital but went

back to work after only 3 weeks. I was only 20 at the time.

Skip ahead 14 years to the present, and I have not had

> additional surgeries. Yes, I still have trouble, food gets stuck,

I

> gasp for air, I get the " heart attack " level esophageal spasms.

> There are so many other diseases out there worse than ours, and yet

> every time we eat we are reminded of what we can't do as well as we

> once took for granted.

Ditto, there aren't many of us 'long timers' out there right now. I'm

17 years post op and I hope you'll join me in telling everyone that

we are proof that surgery is the best long term solution.

Good to meet you .

Happy Swallowing!

- in Va.

[Guest guest]

You can buy it at a wholesale grocery store like Smart

& Final, but it only comes in gallon jugs

Dave

--- RICHARD <cynmark24@...> wrote:

> I stopped in at

> a CVS pharmacy (precisely following the directions

> of Carol, who was the predominant poster in the

> beginning) and asked for the Cola syrup in the

> appropriate aisle, and received blank expressions in

> return. Just someone,

> please sell me the darn cola syrup!

__________________________________________________

[Guest guest]

Did he have a wrap? I was afraid about getting

Barrets but Dr Patti said the dor fundoplication would

help not to get it

Dave

--- RICHARD <cynmark24@...> wrote:

>

> Hi Ann!

>

>

He's about 5 years older than

> me, and started with the illness at age 58, compared

> to my being 32. He now has Barrett's. Not sure

> what action he will take next.

__________________________________________________

[Guest guest]

Yes, he definitely had a wrap done also. He and his wife are in the midst of an ugle divorce now (oh, can I tell you stories). Anyway, I agree with Dr. Patti. I guess there are no guarantees about this. Perhaps the stresses surrounding the divorce and his temper did not do his body good. > > > > > Hi Ann!> > > > > > He's about 5 years older than> > me, and started with the illness at age 58, compared> > to my being 32. He now has Barrett's. Not sure> > what action he will take next.> > > __________________________________________________>