USC medical center, here I come...(maybe)

[scaeagles]

I'll be glad to. I haven't the time to post the details at present. Not that I have many options at present....I'll do that tomorrow.

[scaeagles]

OK.....a brief history (OK - after reading what I wrote, it's not brief) of treatments and options.

Achalasia is somewhat rare. Runs about 8/million in the US. Because it is not fatal and not common, there is not much research or development of treatments.

Treatment options are limited and are mostly adaptations of therapies or treatments for other problems.

The first is a balloon dilitation, or stretching of the esophagus. I've had this done 6 times (no, not by MBC ), including once post surgery this past August. The positive results from this last only about 2-3 days for me. Normally, positive effects last about 6 months for other conditions that require this treatment.

There are nitrates and antispasmodic drugs that I have tried. The nitrates made it possible for me to eat for about 20 minutes, but the resulting killer headache mside effect made it impractical to do this at any time except prior to going to bed. The antispasmodic drugs were ineffective.

There is one treatment I have not tried, which is botox. Botox stops muscles from being able to contract, and as the major problem with my disease is that the bottom of the esophagus won't open. Paralyze them with botox and there can be beneficial effects. However, surgical candidates are discouraged from doing this, as for some reason, which I do not fully understand, it makes surgery more difficult at a later date. It is also temporary, requiring a new injection every 3-9 months depending on the individual.

The last option is a surgery called a heller myotomy, which is basically removing the sphincter at the bottom of the esophagus and cutting away portions of the muscles from around the lower esophagus. This is what I had done in April. Was great for about 4 months, then symptoms returned. Normally, depending on progression of the disease, this has a lasting effect of 10-15 years before any other treatment is required.

Then there's me. Mine is progressing extraordinarily rapidly. I've always been an overachiever. That brings me to my hesitation. It is a "better the devil you know" attitude on my part.

I have had a feeding tube (actually called a PICC line, inserted not into the disgestive system, oddly enough. It goes in the inner upper arm and threads through a blood vessel into the midchest). Pain in the butt, but workable. No side effects except that I cannot swim. While I was only on one for three weeks or so, for the last week I was able to just have it at night (they just turn up the pump faster). Perfect nutrition. No pain trying to eat. I've been told that you can reduce the time to 8 hours as long as you are able to get fluids down in the normal fashion.

There are no gaurantees with this surgery that is being recommended (or was recommended by this first surgeon - I am hoping that other surgeons I have the chance to talk to have differing opinions) will be a permanent solution. There are, as with any major and complex surgery, risks and possible complications. So.....I wonder if a feeding tube is a better option. It's where I'm at right now. I don't want to make anything worse. A feeding tube means that it doesn't matter if my disease continues to progress.

Longer than I wanted it to be, longer than you wanted to read, I'm sure, but that's the story and my current mentality.

edited to add: I've also tried other things - chiropractics, acupuncture, herbal concoctions (some far too nasty to mention), and massgae therapy - all to no avail.

[innerSpaceman]

Originally Posted by scaeagles

The last option is a surgery called a heller myotomy, which is basically removing the sphincter at the bottom of the esophagus and cutting away portions of the muscles from around the lower esophagus. This is what I had done in April. Was great for about 4 months, then symptoms returned.

WTF?!?! You have one aggressive esophagus there, bud!

Ok, so how does that surgical procedure differ from the one(s) being proposed now? I can understand not wanting to have surgery that results in a measly 4 months of respite, but - even accounting for you being on the uber-low end of the symptom-abatement scale - how long are abatement rates predicted for either of the two new surgical proposals?

My point is that you can always go the feeding tube route ... (without making too light of the risks and recovery surgery entails) why not try all other options?

[SacTown Chronic]

Originally Posted by innerSpaceman

WTF?!?! You have one aggressive esophagus there, bud!

I swear, ya read things on the LoT that you'll never see anywhere else. Ever.

[scaeagles]

Originally Posted by innerSpaceman

Ok, so how does that surgical procedure differ from the one(s) being proposed now? I can understand not wanting to have surgery that results in a measly 4 months of respite, but - even accounting for you being on the uber-low end of the symptom-abatement scale - how long are abatement rates predicted for either of the two new surgical proposals?

My point is that you can always go the feeding tube route ... (without making too light of the risks and recovery surgery entails) why not try all other options?

The surgery I had (a heller myotomy) is a modification of an existing organ, being the esophagus. What's being proposed is a replacement of the esophagus with part of my intestine, basically a transplant within myself. The original was a 3 hour surgery (and it included an anti-reflux procedure as as well). What's being proposed, so i was told, it a 12-14 hour ordeal, and messes with stuff that currently works just fine. The original was done laparoscopically (6 small holes in my abdomen), the second will require a full opening of my abdominal cavity and chest (this is my presumption, not what I was told - how the hell else could they move part of my intestine to my chest, including under my sternum?). The recovery time will be immense, as opposed to basically a week for the first.

Yes, I can always go the feeding tube route. So it's a cost/benefit analysis for me. Or better stated a risk assessment analysis.

Truthfully, I'd go through my first surgery every 4 months for the rest of my life if it were possible. I'd take a week of recovery for 4 pain free months and the ability to eat what I want (after a couple weeks of restrictions for internal healing) without the pain associated with what I deal with now.

I was told that the esophageal replacement was basically the "last chance" for relief. That tells me it is either a permanent solution or....I don't know. If it doesn't work, I really don't know what that means. How screwed up would I be then?

During the progression of my disease, I have had all sorts of opportunities to read up on therapies and treatments and surgeries and became very comfortable with what was proscribed. This, however, has come at me completely from left field and I have had no time to research it or think much about ramifications.

But, hopefully, this is an exercise in futility. There will be other opinions. And in fact, this morning, my case manager from my insurance company called and has a surgeon who works out of a hopital less than a mile from my home who was trained at the Mayo facility here in Phoenix. She spoke with the surgeon and the surgeon believes that she can help me. This is encouraging. I am hoping there is a surgery much less radical. My appointment is next Tuesday afternoon. This is the surgeon who was recommended to me by the surgeon who did my first (he had to retire for medical reasons of his own). The insurance at first did not want to approve out of network, but they have run out of options.

So, I am hoping to have a different solution in a few days.

Steve, thanks for your interest.

[scaeagles]

If anyone is interested, here is a web page that has the most concise explanations of therapies for achalasia.

http://patients.uptodate.com/topic.a...=digestiv/4384

[Ghoulish Delight]

Originally Posted by scaeagles

If anyone is interested, here is a web page that has the most concise explanations of therapies for achalasia.

http://patients.uptodate.com/topic.a...=digestiv/4384

Thus, people with achalasia often accumulate large volumes of food and saliva in the esophagus. Food can only enter the stomach when enough pressure builds up in the esophagus to overcome the resistance posed by the non-relaxing LES.

So really, you can avoid all of this (surgery, feeding tubes, etc.) if you had something long and hard to shove down your esophagus on a regular basis to force the food through. Anyone have any ideas?

[scaeagles]

Originally Posted by Ghoulish Delight

So really, you can avoid all of this (surgery, feeding tubes, etc.) if you had something long and hard to shove down your esophagus on a regular basis to force the food through. Anyone have any ideas?

Ha, ha.

Trust me - from what I've heard, MBC couldn't do the trick.

What you quoted is a bummer. Before I was used to my condition and kind of had a feel for the symptomology, there were times in the middle of the night everything in my esophagus would come out onto my pillow if I turned just right (or just wrong). That was always pleasant. I've since figured out how to clear it pretty effectively prior to going to bed.