Saturday, December 17, 2011

Achalasia talk...

I have achalasia.

I was lucky; the radiologist who performed my first barium swallow knew exactly what it was. Time between that test and my myotomy surgery was only four or five months. Many people with achalasia spend years trying to get their symptoms properly diagnosed. I was also lucky to have found an extremely knowledgeable support group online - the people in that group taught me a great deal about treatments, other symptoms, and so much more. The people in this group helped me immensely, and gave me the information I needed to educate a few of the professionals I came across. Who knows about a rare condition more than the very people that have it? I'd dare to say no one.

I. am. very. lucky.

My symptoms appeared in a textbook fashion. At first, I only had problems with dry food (bagels, rice, etc). Then over time, all food. Not long after, I got to the point that I couldn't even drink water without it 'sticking'. Only soda, with its carbonation, created enough pressure to push food and liquid through my LES. Then the truly horrible symptoms. I couldn't sleep laying flat; I had to raise my head. However, even still I would often wake up choking (aspirating - can easily lead to nasty pneumonia) on the food and liquid in my esophagus. I would get horrible chest pains that, according to others who've experienced both, were similar to a heart attack. And more gross and painful stuff, but you get the idea.

I had the barium swallow (that showed the barium was just sitting in my esophagus), an upper-GI endoscopy (to rule out cancer), and menometry (which proved that peristalsis wasn't happening, nor was my LES opening). The first two tests were no big deal. The third was .... not fun. All three of these are explained in the link above.

I had the laproscopic heller's myotomy surgery, with fundoplication, in December 2004. The surgeon cut my LES and wrapped part of my stomach around my esophagus to keep stomach acids from going back up through the, now cut, LES. Again, I've been lucky. I haven't had problems with acid reflux.

However, the surgery didn't relieve my symptoms for as long as I'd hoped. From the link above: "Surgery relieves symptoms in 70 to 90 percent of people. Symptom relief is sustained in about 85 percent of people 10 years after surgery and in about 65 percent of people 20 years after the surgery." But, only a few years later, food started 'sticking' again. Not as badly as before, and I haven't had the choking or chest pains, but eating is often uncomfortable. (Now I'm not feeling so lucky - only 15% don't get relief lasting at least 10 years. Mine didn't even last for five.)

I had a balloon dilation performed in 2009. The GI doc was conservative; he used a fairly small diameter balloon. I understand - perforation is most likely to occur during the first dilation procedure and perforation scares the crap out of me. His intent was to see how well it worked, and we could always do another if necessary. Well, something more will be necessary. I had only a couple of months of total relief after that procedure. I've been acting like an ostrich with my head in the sand about it, but it's getting worse and I really should have something done.

My worry is that I'm stretching out my esophagus by not getting the 'sticking' taken care of. A person can't regain lost elasticity, and I will probably live many more decades. Some people have had to have their esophagus removed (which requires the stomach to be pulled up to be reattached higher in the chest). I'd really rather avoid that, thanks.

But I'm also worried about acid reflux. Barrett's Esophagus can result from too much acid, and it can more easily lead to esophageal cancer. That's not easily treated, and in fact has a pretty horrible survival rate. Any treatment I get will increase my chances of acid reflux.

So, what to do... Something does need to be done, and I certainly shouldn't try to make the decision without professional advice.

Honestly, there's a test I'm sure I'll be asked to have redone and I'm hoping to avoid it. It was horrible the first time (manometry). Sure, it doesn't sound that bad, but it was painful. I don't know if it always is, or if the lady that was doing it did it wrong. All I know for sure is that I do NOT want to do it again. I need to get over the fear of it and get seen; maybe it won't need to be done again, and I'm procrastinating for no reason. Ugh.

In any case, the reason I'm writing this post... I have a Google Alert set up to email me whenever "achalasia" is in the news. I received an email today with not one but two articles in the same journal volume.

The first. Plain words summary: the myotomy surgery and balloon dilations have similar outcomes. Previously, it was generally thought that the surgery resulted in a longer term improvement.

The second. Plain words summary: there's a new method for the myotomy surgery that's done through the esophagus itself. The 'old old' way was to get to the esophagus from the back, deflating a lung, which obviously required a great deal of recovery. The 'new' way was laproscopic, from the front of the abdomen (and the method I had). A day or two in the hospital, but only five small inch-long scars. This 'new new' method results in no external scars at all, and from this (and other) recent journal articles, I've learned it's pretty successful in treating the problem. This particular study addresses this surgery even after a previous myotomy.

I'm now living very close to one of the best centers in the country for achalasia, the Cleveland Clinic. I really need to deal with the process of getting referred there for some sort of treatment for the symptoms I'm having now. I'll kick myself later if I don't take advantage of the geography before Darrell gets PCS orders. My problems aren't a huge problem currently; I'm only having to slow down while eating, take a type of breath I can't describe if I feel food not going down quite right, and food only gets badly stuck if I'm not drinking a lot during a meal.  (Strangely, soda not only doesn't help like it did before my surgery, it makes it worse.)  But, I'd be an idiot to not take advantage of the situation. Progress is being made, and perhaps I'm a good candidate for this new procedure. Or at the very least, I can get another dilation done by someone with a great deal of experience.

I just really hope I don't have to do that manometry test again. *shudder*


  1. If you need to go to the Cleveland Clinic you can reward yourself by visiting Sarah's family. Tell your doc about the bad experience with the test, there are drugs that can be given to help you, uch like they do with endoscopies. I know about hidden chronic diseases. They stink, but also can teach us some valuable lessons. So what (metaphorically) are you tired of swallowing?

  2. I have to swallow when told, and NOT swallow the rest of the time. So they can't give the same stuff as the endoscopy. Bleh.