Achalasia Member Introductions

Achalasia
#133

I have had Achalasia since 1988. Finding this site is such a relief to know that others are out there and can relate. I’m really concerned, I have not had any surgeries, and stopped the dilations about 10 yrs ago, just got tired of the doc’s not understanding what was wrong with me. At last someone said the word “achalasia”, that is when I first knew what to call it.

I have no idea what shape I am in, I don’t feel that it is any worse than it has been for years. I live a fairly normal life, and have learned how to eat in my own way, I guess you all understand what I am saying.

What is an esophagectomy???

Can anyone live without these surgeries or am I looking at major problems??

I read about so many that have had the “surgery” and it doesn’t work, this makes me so sad, what are we suppose to do???

I realize that it’s vital to have the best doc’s when it comes to treating A, and I would not settle for anyone who has no experience with it.

I’m thinking that I should go and have an upper GI, to measure the size of my E, and see what to do next.

Thank you for this site, and any reponse is appreciated, Merry Christmas to all of you!

Julie

#134

Hey Julie -

First of all, where are you from? We may be able to recommend an experienced A doc for you - they ARE out there! It is absolutely vital that you get checked regularly as this condition is progressive and your E can eventually get very saggy/baggy and twisted and cause further problems.

An esophagectomy is the removeal of your esophagus. It is a major surgery but you can live very well after the recovery period. I am having one Jan. 11th in Pittsburgh. I’ve had A since 1982-ish and one myotomy almost 19years ago by a doctor that did NOT have good experience (no internet then, I didn’t know any better).

Most people will do very well with a myotomy performed by an experienced doctor - there are some out there who do hundreds a year!

Good luck to you and welcome!
-Michelle in NC

#135

Hi Michelle,

Thanks for your reply! I am from So Cal, near L.A. area. I guess you have had A for a long time as well. How did you progress??? Did you “feel” like you were getting worse with time??? Or is it silent.

I was never told that it progresses with time, only found that out recently from my own research. Have you known others who have had an esophagectomy??? What do they use to make a new esophagus?? I am truly amazed that this can work and one can live fine with it. I’m so sorry that you are facing this surgery.

Also, do you think that I should start with an upper GI??? Would that show if it is saggy or weakened??

I am at almost 20 yrs with A, and have not done anything in the past decade. My symptons are about the same as always, nothing much seems to have changed since the onset. I just learn to live with it.

Thanks for your help, Julie

#136

I don’t know about the esophogus thing but I know that I’ve been through an upper GI first, then a manometry test which tells them how tight your “E” muscles are and that test will confirm the “A”. They had me actually eat food coated with barium to see if it was a chew and swallow problem only. It does get worse and the thing I was warned about was asperating food since that can cause and infection in your lungs that is hard to stop and could kill you.

They did a myotomy on me which actually has worked ok so far, I’ve got a couple of issues that have just popped up but we’ll figure them out but I feel way better than just putting up with it prior to the myotomy.

Please find a doc that specializes in this and let them at least look at you and see if they can help. There is a better life than choking on food…

#137

Hi Julie -

Yes, I have had A for pushing 30 years, since I was 12 - I’ll be 40 in March. Good news is that you’re near LA and you have several options for doctors who have a lot of experience. Off the top of my head, there is Dr. Mary Maish (sp?), Clark Fuller and there are several others - my suggestion would be to go the the Yahoo! achalasia site and ask there. There are over 1500 members and quite a few in your area that can tell you who to see. Take the time now, since you’re managing OK from day to day to get to the right doctor for testing and treatment. I believe that if I had known any better - this was before internet, I would have gone to a more experienced surgeon in 1989 when I had a myotomy and maybe not be facing removal now.

There are about a dozen or so members of the Yahoo site who have had -ectomies and they are all doing really well. I’m traveling about 8 hours to a surgeon in Pittsburgh who performs about 150 of them a year - thank God for the internet!! They will take my stomach and form it into a tube to replace my stomach. Over about 4-6 months, the remaining part of my stomach will stretch out to accommodate frequent small meals. other than that, I should do pretty well. Because of the Yahoo! group, I’ve known that this was a possibility for quite a few years.

Research your doctors carefully, there are several in your area who see a couple of hundred cases of A every year and there are several members at the Yahoo! site in your area, I know they have meetups every now and again also. If you go the Yahoo, there is a database file (look at the top left and click on database) that has members names and addresses - look for Deborah Latimore, Sandy (there’s 2 sandy’s one from so. CA and one from no. CA), Peg from Lompoc - there’s a few others - the group is so big now it’s hard to keep track. If you just send some general posts, someone will give you the info you need.

Hope you’ve had nice holidays and maybe I’ll ‘see you’ around the Yahoo site.

Take Care,
-Michelle in NC

#139

Hi. I’m Patrice. I first realized something was wrong in early 2006 when I started having “chest pain”.

I got treated for GERD, although I was mostly nauseated with a feeling of having to burp only they seemed to “stick” in my throat. During my 4th pregnancy in 2007 the spasms got worse and I began to vomit excessively to the point of needing IV fluids. Once again got treated for GERD, which was useless because I was mostly vomiting up food I’d already eaten.

Finally got a good GI who noted food all through my esophagus during an upper GI endoscopy, everything else was normal…she suggested I had a motility disorder and referred me for the barium swallow, which I had today. The Doc didn’t even go through the whole procedure, my E was dilated (twice what it should be he said) and you could just see the barium filling up my E without it going down…no contractions at all. And of course I got that "sticky"feeling…and hope I don’t puke look on my face also.

Anyway he said it was achalasia and they would have to operate but I’m terrified it won’t work. On the bright side, if there is such a thing…my spasms are intermittent as in maybe once a month, if that and I have gone to the ER twice in the past year only. I am also able to eat…IF I am careful not to overdo it, although there are times when I can’t hold down any solids at all…sometimes even liquids will come back up…I guess thats dependent on how much is sitting in my E to start with.

My onset was very sudden and it’s progressing rather quickly I think so i want to do something ASAP. I live in the Seattle area…does anyone know of any good docs to see? Thanks so much…

BB,
Patrice

#141

Sounds pretty similar to mine. A couple of years ago I went from fine to not being able to eat or drink all within one year. Great for weight loss and I got to drink chocolate shakes all the time! :slight_smile:

Ended up in surgery for Heller Myotomy. Worked very well although I did notice an increase in acid reflux. Had a good two years. Unfortunately last few months symptoms have started returning which can sometimes happen. May have to go in again.

John

#142

Hi Patrice-

I dont get on this site to often but wanted to offer you to Come visit us on this other achalasia site for more information.Its alot of info about achalasia and a new post today of Drs for achalasia.YOU MUST HAVE A SPECIALIST!!!NOT JUST ANY DR CAN DO THIS OPERATION.This site Also has daily activity with members.2 sites better than 1 with double the info; )

Achalasia does not go away and does get worse.You need treatment and need to get it as soon as you can as the longer you wait the worse it gets.

-Tonia iN VIRGINIA

#143

I had a Heller Myotomy and partial wrap back in October at UW with Dr. Oeschlager. He and the team there were wonderful. What an amazing difference! The sooner you deal with this disease, the sooner you will be able to enjoy food again. Don’t hesitate - time is NOT going to make this go away or get better.

All the best!

#144

HI Patrice,

My name is Jeanne. People call me JC. I am 47 and have had Achlasia since I was 10. I was correctly diagnosised at 17. I have had 3 surgeries. My story in on the Yahoo site. I have been in the Yahoo group since my last surgery in 2000. Although this site is good, I think there is more info on the Yahoo site and stronger relationships, at least for me. I only have time for one group as my husband and I are missionaries who travel about 3 weeks out of every four.

Also, I recently broke my shoulder which has made typing difficult…LOL They call me the one armed women now…

Blessings,
JC

#145

HI i have achalasia I also had the surgery about 4 years ago and now I am starting to have trouble any one have any tips

#146

hi my name is debbe. I have achalasia for over 6 years. It is really getting worse. I have had the botox, which i will never have again because it made me deathly sick. Now i cannot keep anything down, and they have put me on an inhaler to help me breath. The exrays that they have taken, the drs told me that they can see thru the esphogus and it looks real thin. I need the surgery so they say, but have no insurance. If anyone out there can give me some advice i would surely appreciate it.

#148

Thanks everyone for the replies=)

I actually had the Heller myotomy with partial fundo with Dr. Pelligrini from UW on March 21st. I am able to keep things down now.Although I think I need to tone it down…I am so used to not being able to keep things down that I am eating perhaps a little faster and a taking bigger swallows than I should I can feel it still sometimes.it goes down with liquid of course but I always get nervous when I feel that bolus. Anyway turned out I had a rareform of achalasia which made my E tissue VERY thin…it tore during the myotomy and Dr. Pelligrini had to reconstruct it, I was admitted to the hospital for 5 days with an NG tube and NPO for 3 days…ewwww. But I’m better now =)

#149

I am glad you are feeling better Patrice. Are you eating all kinds of food? Also, did you try other treatment methods before the surgery?

I have had 3 dilations with very little help. I am considering surgery but I want to weigh all my options first.

It seems like surgery was a great choice for you! I hope that you continue to get better and please keep us posted.

Tatiana

#150

Hello, I am a new member.

I have not been officially dx with Achalasia yet had manometry this last Tues. results not back yet. I have had CT and endoscopy. I am pretty much convinced that I have it. Dr. has also found the biggest hiatal hernia that she has ever observed. I choke on food and water and have periodical chest pains in the night, I also cough at night. My throat fills like I swallowed a brillo pad. After I eat or drink I start spitting up clear foamy mucous. Does anyone else experience this?

I also have a condition called Mal de Debarquement syndrome. Somehow I feel that it may be related, but not sure, because nothing is known about this disorder as well. I have to take small sips of liquids, and sometimes I can eat without getting choked and sometimes I do. So I feel I am in the initial phase.

Thanks.

#151

I have had the foamy mucous. Alot of times when I try to burp - this comes up. I think it usually happens when I am either laying down or if I am full.

#152

My name is Michelle I am a happily married mother of two beautiful little girls and I was just told 2 days ago that I have Achalasia.

I started having problems about 4 years ago. When my symptoms first began they mostly resembled reflux I only had trouble swallowing on occasion. The doctor I saw told me that my weight was a major factor in my condition and that if I lost weight it should help. Well for 2 years I didn’t loose any weight so I didn’t go back to the doctor b/c I felt like I wasn’t getting any better b/c I wasn’t loosing weight.

I actually started loosing weight about 2 years ago and have lost about 70 lbs. I don’t have trouble w/ heartburn or most of the problems with the reflux, but the swallowing did start to get worse, not unbearable just more often. I still thought it was b/c of my weight. More recently I’ve started getting sick every time I eat or drink and since I’ve not been trying to lose any weight when I started to anyway I thought something was wrong. This time I went to see a gastro dr who told me he thought I had a stricture due to the reflux and that it needed to be opened.

I was nervous but knew that the last month of this was enough. I went for the EGD on Thursday and it was really easy. I woke up and he said everything looked great that there was nothing wrong with my esophogus there wasn’t a stricture at all.

He told me that I needed to have more testing done but he’s fairly certain that Achalasia is the culprit. I went for a barium swallow and saw that when I eat my food doesn’t pass into my stomach.

I have one more test to undergo on Monday before he will “confirm” my diagnosis but he says that after seeing what they’ve done so far they are now fairly certain this is what I have. I’ve spent the last two days researching this condition and realizing that I’ve had some of the other symptoms but never put them all together.

I know that there is nothing I could have done to prevent it but I feel like I should have put something together sooner. I hope that talking with others who have this condition will make this process easier.

#153

Hi Michelle
You wrote a reply to my story/message but I cannot retrieve.
Your story is so similar to others and I am so glad that you are finally being diagnosed.
Please write me directly at leorben@msn.com

#154

Pneumatic dilatation-side effects-its been since Dec,07 when i had the dilatation procedure done,food going down okay,it seems every time i swallow i have to pause and wait for air to be purged out,have a urge to burp when laying down, would like to know if other members have these symtoms,is this from the aperistalsis,or from the cardia been dilated-Vinnie

#155

Achalasia has been tossed around the Doctor’s office a few times. I am currently going through all the tests in order to confirm the theory. I’ve had what appears to be Achalasia for a few years now and it is becoming progressively worse. I hear it can come from stress, I’m not sure whether that is true or not, but my husband is currently deployed in the Air Force.

At the moment I am only having problems swallowing and trying to push food down and I also have moderate chest pain. Luckily, I can eat pretty well, only having to chew food 30 times before I can attempt to swallow. The dilation I will be receiving next week will help. I do not want to get to the point where I cannot eat well and start to lose weight. I know this is a progressive disease, but I am 115 pounds and can’t afford to drop anything.

I am a hair stylist and don’t think it will effect my job greatly other than feeling nauseated constantly. Next year my husband and I will be moving to a very small town and I hope I can find a good doctor. New job, new doctor, new everything. If you wanted to know a little about me, my name is Katie, and my birthday is next Friday and I’ll be 20. My favorite color is green and I shop way too much.