Questions about 2nd myotomy with esophogectomy

Achalasia
#1

I have a friend that’s too shy to post. She’s on this site, but hasn’t posted any questions other that to me. And I just don’t think that I can give her the information that she is looking for about achalasia.

She’s facing a 2nd myotomy with a fundo redo or an esophogectomy. I’m hoping that she will see this post and start speaking up. I know that I may be over stepping here, but I’m really concerned for her. She says that she feel very alone with this disease. Can you help me let her know that we are in this together.

How can you help someone too shy to post?

#2

Hi,
I am so sorry to hear about your friend - she must really be going through a tough time. It is a very difficult decision to make especially if one is on their own. There are lots of people out there that feel that they cant post for all different kinds of reasons - think they cant write/spell well, think they don’t have anything to contribute or feel the questions they ask are “too stupid”. So difficult to know how to respond except to say that on every group I have been on people have been so supportive and I have always felt like I was special. Your friend is special too so maybe in order to break the ice she would be willing to write privately at first to people? She is welcome to write to me anytime.

Please tell her that she is not alone and that talking to others will make the difficult road a lot smoother.
Good luck,

Lee

#3

I guess I must be the one who is too shy to post. My problem is that I am very confused at this point I think I have information overload. I was told I may need a esophagetomy and later told I should do a 2nd motomy. I got a second opinion the second opinion said to do a 2nd motomy. With that I booked a surgery for July 30th. My sister had a friend that was a surgeon who specialized in achalasia I went to see him last week and he said he would dilate. Now I am very confused because I had a dilation in May that left me unable to eat solid foods and with awful pains in my stomach. Just wanted to know if anyone else had this experience and what they did and what the outcome was.

#4

Hello, Tricia.

I often tell people that with achalasia there are no right answers just good guesses. It is not to uncommon for doctors to disagree about treating achalasia.

Dilatation may be the least risky and easiest treatment to recover from of those offered. If the last dilatation was done using a small balloon it may be worth considering a larger one. If you have already been dilated to a large balloon then why is this expected to help? You should ask your doctor about that. At this point there is little to loose by trying it unless there is a perforation.

Another myotomy may have a better chance of improving things than a dilatation, but it could end up being an open myotomy. It still may not improve things if your esophagus is to wide or bent down below the entrance to your stomach. 

If your esophagus is too out of shape then an esophagectomy may be the best option. The risks and the recovery time are the worst with this option, but you won't have an esophagus to give you any more trouble. That doesn't mean there can't be other related problems though.

Doctors don't always agree about the risks and chances of success but even when they do they still don't always agree when the benefits out way the risks. Also some doctors prefer what they are personally good at or have had success referring others for

There are experts and then there are experts. A doctor that does only dilatation is not an expert about myotomy or esophagectomy. A doctor who has only done a few of either is not an expert.

You should ask each doctor how much experience he has with each type of treatment, not just the one he recommends. You should also ask each one what he thinks the chances of each treatment has of working, and what the risks are. You should also ask how likely it is that if you don't have the esophagectomy now how likely is it that you will need it at sometime anyway. You should be able to get this information just by calling their offices.

You may also need to contact an expert's expert. 

notan

 

#5

Dear Tricia,

Notan has already given you quite some info on the medical stuff concerning your 3 options, so I won’t really add to that one. As usual Notan has done a great job with his post!!!

Tricia, I just wanted to let you know, that I am in quite the same position as you are. You are not alone and I know the feeling of not being alone can help one a lot. The support I get from my achalasian friends is so important to me!!!

At the moment I am making up my mind concerning a 3rd myotomy, or an -ectomy myself. Dilatation and/or Botox won’t be my solution. I had my first open Heller’s 11 years ago. Before that I had 5 balloon dilatations (which worked, yet only shortly) and after my Heller’s I had one bougy dilatation (which did nothing). January 5th I had my 2nd open Heller’s. April 23 I went on a great Botox honeymoon and last Monday I got Botoxed again, this time it does give me some relief, I am sorry to say it ain’t a honeymoon yet…

Making your mind up, choosing between 2 surgeries is heavy stuff. It’s not something where anyone can truly advise you. You need to follow your ratio, you need to get as much info as you can, you need to talk to experts, you need to talk to fellow achalasian/-ectomy patients, you need to talk with your family and friends. But…the most important person to talk to are you yourself. Follow your heart, follow your instincts, you’ll do the right thing.

I am not gonna give you any medical advice, as I don’t know anything about your background. I don’t know why the one doc advises dilatation, the other myotomy and again another -ectomy. YOU need to find that out!!!
Talk to them all and ask them all for their reasons why. You really need to know to make up your mind.

I myself am heading towards an -ectomy. I think it’s inevitable for me. Yet, my case is not your case, so don’t read me wrong here (like I wrote before, I don’t know your background, I am just telling you about my personal experience and feelings, regarding my own case). I placed a post on YAHOO about one week ago. It might be usefull for you to have a look at last weeks posts on YAHOO (as of Thursday July 12), as I got the greatest, most positive replies. These replies have given me so much hope, so much a renewed feeling of safety, even if I am scared to death. People who answered me know what they are talking about, they mention their own experiences. Not only love, roses and sunshine, but the truth. And for as far as I can see it, a summary of the truth is, that they are all very happy with the results of their -ectomy.

The decision I am making is hard on me, as I have to choose between 2 damned hard surgeries (just like you need to) and between 2 damned good surgeons, who are also 2 damned good persons… One of the two thinks he can help me with a new type of myotomy (TSE), whereas the other thinks I truly need an -ectomy. Which one is right?

To help myself on that one, I made a mindmap/flow chart. I am going to send you this one off the board later in a personal mail. This flow chart is personal, as it shows my feelings, my questions, my pro’s and my con’s concerning the surgeries I am choosing between. This flow chart might be a handy concept for you. You could alter it completely to your situation. To me it is a very usefull tool. With it I try to look objectively to my options, leaving no detail out. I am changing the map every single day, mostly adding things.

Hope to have been of help and wishing you lots of strength, I know you need it.

Love,
Isabella

#6

Tricia,

I’m sorry you are facing this tough decision. I can’t help you make that decision, I have not faced that yet. I do have achalasia and I have been reading post from other’s who have this disease for the past 7 years. The things I keep hearing over and over is how important it is to find the best doctors you can find. Not just good GI doctors or surgeons but one who is experienced in achalasia. There is only a handful in the USA and that is also true in other parts of the world. I don’t know where you’re from so I don’t know if one of these are close to you or not.

I just wanted you to know that you are not alone in this disease or this decision. There are other people out there that can and will give you the support you need to get through this. Ask any questions you need to. Nothing is too simple or tough to ask. You will find someone who can help you with your questions.

Maggie

#7

Hi Tricia

My name is Pippa and I live in the UK I was diagnosed with achalasia last year and had an open myotomy in September 2006.

I totally agree with Notan, Maggie and Isabella its very important that you ask as many questions to each of the three doctors as possible. Don’t feel that you are annoying then with so many questions its your body and your health thats the msot important and not what these docotors can add to there list of achievements with this rare disease.

As Isabella says make a chart of all three possibilties and work out the questions you want to ask and what YOU feel is best for YOU.

If it means swapping and changing you mind till you are happy with the results then so be it, but please please speak and contact as many achalasians as possible and as as many questions as you can think of.

Join the yahoo group if you can and post your position there I am sure that many member will answer some of your questions and concerns there as well as here.

take care

Pippa

#8

After doing the small ballon which didn’t last 24 hours, I did the big one in the hospital the pneumatic dilatation, where they shove the ballon down your esphagus and blow it up real quick to tear your esphagus back open, and been good for 3 years now. Well not good I still have to sleep sitting up at least a little can’t lay flat that’s forsure, and watch what I eat, after losing a 100 pounds in six month’s from the Achalasia I don’t have a big appietite. I would say my doctor saved my life because I really was at my last wit. I lived a slow painful death for a year till the pneumatic dilatation. I’m saving the last resort “major surgery” till I just have to.

Brick9