Debbi I feel like a study case :-(

[Guest guest]

Well, I am not sure. Maybe it is because I have had A for about 16 years now and my E is in a bad state. I already have the sack where food gets stuck and I cannot believe that wont cause anymore problems after a Heller. Maybe if my E was still straight, I would be hopefull but not anymore. Hugs,

Biancka

Re: I feel like a study case :-(

p.s. does anyone know of an A patient who had a Heller and who never had any problems anymore ?????

Biancka, who ever told you that the Heller is "temporary"????

There are several people in the group that are in their second or third DECADE of Heller Myotomy success! I think Hawaii is at 25 years or so??? It's actually the *rare* person who ends up with a complete esophagectomy (at least in the US); it's not the norm at all!

(((HUGS)))Debbi in Michigan

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[Guest guest]

Bianca, I was not going to comment, because I am one of the rare people for whom a Heller's myotomy did not work the first time, but on thinking about it I must. I am most certainly going to have a repeat Heller's myotomy in the not too distant future. There is great chance that it will work this time and this time I will see that the surgeon I go to is more experienced. An oesophagectomy is major surgery and not something I would undertake if I had not explored every other option. A hellers is not such major surgery - it is a relatively small op in comparison especially if it is done laproscopically.

I too have a large sack and the added problem of a diverticulum (sort of bubble out the side) and my oesophagus is also distended and in a mess, but that is not the compelling reason for an oesophagectomy - I don't think so anyway.

I am coping now with only having soup type meals so that there is no build up of food down there. Not an ideal way to live but since I have had the dilatation I am much better and want to keep the "bag" as empty as possible.

My heart goes out to you and I do understand your dilemma.

Hugs,!!!!

Joan

Johannesburg South Africajpearse@...

Re: I feel like a study case :-(

p.s. does anyone know of an A patient who had a Heller and who never had any problems anymore ?????

Biancka, who ever told you that the Heller is "temporary"????

There are several people in the group that are in their second or third DECADE of Heller Myotomy success! I think Hawaii is at 25 years or so??? It's actually the *rare* person who ends up with a complete esophagectomy (at least in the US); it's not the norm at all!

(((HUGS)))Debbi in Michigan

[Guest guest]

Joan, I think it's great for everyone to post their experiences, both good AND bad. It's only w/ a frank and complete discussion that people can make truly educated decisions! )

One thing I've always wondered about, for "pouchy" people, is if it's possible to just remove the lower (pouchy) half of the esophagus. Has anyone ever talked to a doc about this? (I'm not in that situation, so it's never come up for me personally.) Seems like if the top half isn't that bad off, it would be easier to do than, compared to either doing the "stomach pulled up" or "intestine replacement" surgery, which involves so much more messing around with body parts.

Oh, and one thing I want to point out to people is that lots of people who have had successful treatments (whichever kind) probably stop coming to the board afterward, b/c they're no longer in need of support. So oftentimes, the messages that people are posting are the ones w/ problems, rather than a true cross-section of achalasia in general. Looking at the poll on "success of myotomy" I was struck by how I didn't recognize so many names of people who indicated they were happy w/ their surgery. There are evidently lots of people who had good outcomes, but who don't join in the discussion anymore.

Debbi

Bianca, I was not going to comment, because I am one of the rare people for whom a Heller's myotomy did not work the first time, but on thinking about it I must. I am most certainly going to have a repeat Heller's myotomy in the not too distant future. There is great chance that it will work this time and this time I will see that the surgeon I go to is more experienced. An oesophagectomy is major surgery and not something I would undertake if I had not explored every other option. A hellers is not such major surgery - it is a relatively small op in comparison especially if it is done laproscopically.

I too have a large sack and the added problem of a diverticulum (sort of bubble out the side) and my oesophagus is also distended and in a mess, but that is not the compelling reason for an oesophagectomy - I don't think so anyway.

I am coping now with only having soup type meals so that there is no build up of food down there. Not an ideal way to live but since I have had the dilatation I am much better and want to keep the "bag" as empty as possible.

My heart goes out to you and I do understand your dilemma.

Hugs,!!!!

Joan

[Guest guest]

, I remember all too well how overwhelmed and depressed you were not so long ago.... the change in you in the month or so before your surgery (and since, too) was absolutely remarkable to see! I've seen others "blossom" with the group's support, as well -- and Genia both come to mind as recent members (I think you and Genia both joined about the same time, even?)

I just love the way this group can help so many people who wouldn't have ANY help otherwise! It gives me a "warm fuzzy" to see how much help we can offer each other. It makes it easier to deal with having the disease, knowing that I'm at least able to be a part of helping other people deal with it too!

I read a sign the other day that said, "Pain is guaranteed....suffering is optional" and it made me think of this group. Your example bears this out completely -- the difference in your attitude the week before you found this group was 180-degrees from the way you felt about your life the week after you found the group.... and all with the exact same symptoms from one week to the next. Hardship is so much easier when we have caring and support, isn't it? (((HUGS)))Debbi

PS -- soooo, have you and your boyfriend gone to any nice fancy restaurants yet? When I see a water bottle, I picture your boyfriend in a trenchcoat w/ bottles stuffed inside, like a guy selling hot jewelry on a city sidewalk! LOL

Debbi, I've often wondered the same thing about the pouches. Why can't they remove the pouch or the "bad" part of the esophagus as opposed to removing the entire thing? Hmm....

And I remember when you made that point to me about how most "success cases" have nothing to complain about so they don't post and are inactive members. Really, there are over 450 members in this group and we certianly don't hear from all of them or even half for that matter!! When you brought that point to my attention (because I was overwhelmed and depressed by the bad stories) it made SUCH a difference in my attitude. It quickly made me get over the "why me" phase and "my life is over!" Thats why it's so wonderful that people like and Hawaii (and hopefully me!!) tell us about the success out there and keep in touch.

)