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My Upcoming Surgery for Achalasia

05 Dec

First off, you’ve probably never heard of achalasia. I never did before I got diagnosed. We’ve never heard of it because it is a rare disorder—one with no known cure because they don’t know exactly what causes it. As the doctor told me yesterday, they can only treat the symptoms.

So what is achalasia? In layman’s terms, a severe constricting in the esophagus that makes it very difficult to swallow, coupled with diminished muscle contractions that would normally help move food down. Basically, the food gets stuck down there and is hard to force into the stomach. It takes a lot of water for me to be able to swallow even a few bites of food.

Then, there’s the pain involved with the food getting stuck and trying to force it through. Sometimes my chest hurts so bad I’m sure it feels like a heart attack would. It radiates into my arms, makes them numb. It’s really scary sometimes, especially since pain medicine barely takes the edge off.

There’s a heck of a lot more I could tell you, but unless you’re someone with achalasia, you probably don’t care about all the details. But if you want any more information, here is a link to what the U.S. National Library of Medicine says about achalasia.

I think a few pics might be beneficial in explaining, too. You know what they say about pictures and a thousand words, and I doubt you care to read a thousand words on this disorder.

Achalasia%20copy

Barium Swallow

This is a barium swallow pic I found on the internet. Notice that bend at the bottom of the esophagus and how it constricts before going into the stomach. Also notice how the liquid, which is very thin, is backed up into the esophagus and not making it into the stomach much. Needless to say, it’s not supposed to look like that. Mine is somewhat worse than that because I have two bends. It goes one way then back the other before coming to a point—or bird beak, as the doctor called it—where it meets the stomach. And mine backs up the same way. Imagine drinking something the consistency of chocolate milk and having it not be able to pass through.

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Achalasia Constriction

This is an illustration I found on the internet that gives you a different way to look at the constriction. Imagine how painful it is to try getting food down through that.

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Botox Injection

Yet another pic from the interntet. This shows them doing botox injections to help relax the constriction. I had this done four times, but it really didn’t help much, and in the end, it just made it harder to swallow.

I’ve also had a balloon dilation to open it up some, but I only had a few weeks of relief from that.

So, after three years of dealing with this—that’s it; I’ve only had this for three years—it has progressed to the point that if I wait any longer for the surgery, I will be at end-stage and need to have my entire esophagus removed and they would make a new one out of my stomach.

The surgery I am having is far less involved than that. They are going to cut the muscles to help relax it, plus they will be taking out a small portion of my esophagus: that part at the bottom that is all twisted and comes to a point.

I’ll be on a liquid diet for four days prior to the surgery and for a week or so after. Then I can slowly start to add soft foods and build up from there. I’ll have to be off work for a few weeks, but it will be about a month more recovery time after that.

Now here’s the thing; this surgery is not the end. I will still need the complete esophagus removal in the future. It has progressed so far that this is just a temporary fix. And not only that, but this will only take care of the constriction problem. Nothing can ever bring back the muscle function. So while food won’t stick down there anymore, my esophagus still won’t push it down like it should.

I am going to one of the top surgeons in the world for this. When my doctor referred me to him, he said this surgeon would be the one to operate on the President if he ever needed this surgery. I know I’m in good hands and I’m not worried much at all. I’m just looking forward to the relief this will hopefully bring.

Like any surgery, there are risks—and no guarantees—but I think it will all work out okay.

I tried to cover everything, but I probably missed something. Does anyone have any questions? Anyone want to share their experiences with achalasia or any other esophageal problems?

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4 Comments

Posted by on December 5, 2012 in General

 

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4 responses to “My Upcoming Surgery for Achalasia

  1. ESS @H50BAMF

    December 6, 2012 at 8:07 pm

    Lorraine, I am sooooo sorry to read this! How absolutely awful! A friend of mine has this and she had undergone the balloon dilation several times. It is keeping her stable for now. I really didn’t know it would progress to this. I’m so sad…but thankful that you have a top doc to take care of you. Trusting in your surgeon is such a HUGE deal and one that should not be taken lightly. This i learned after my own ordeal earlier this year. After my cervical surgery the nerves and muscles in my neck didn’t work properly and I had a hard time swallowing for about 3 months…that is NOTHING compared to what you are going through but it is enough to make this all so real to me. When is your surgery, do you mind saying? I will keep you in my thoughts and prayers…

    **BEST*** of luck to you!!

     
    • Lorraine Pearl

      December 7, 2012 at 7:08 pm

      Thanks so much, ESS. Yeah, I didn’t know it could get this bad. I mean, I didn’t know you could die from it if it progressed too far. I just thought it would be hard to eat for the rest of my life. I’m glad the balloon is working for your friend. I knew there was something you went through this year, but I didn’t know exactly what. How are you doing now? As for my surgery, it is on 12/19, so no Christmas dinner for me–but I can barely eat much at all right now anyway. I’m just looking forward to getting relief from the surgery. Thanks again.

       
  2. Teri Heyer

    December 17, 2012 at 11:09 am

    My mom always says of hardships, “This too will pass.” You’ll be in my thoughts and prayers that all goes well with the surgery and that it will bring you much needed relief.

     
    • Lorraine Pearl

      December 17, 2012 at 11:36 am

      Hi Teri. Thanks so much. Yeah, I’m a firm believer that every situation is temporary. I know there’s no cure, and they are only buying me time, but gotta make every moment count.

       

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