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