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

[scaeagles]

Thanks....but ya gotta promise you won't try to kiss me.

[innerSpaceman]

Well, it's two hours of full-on liberal beratement -OR- a kiss on the lips (no tongue), your choice.


But those are your only options.




(Though I think they sell Mickey Mouse Waffle Irons at WoD, if we end up having to go the small appliance route.)

[scaeagles]

Something tells me that I'd face liberal beratement even if I did kiss you. Just a feeling.

Waffle iron....hmmm....let me check the cabinet and I'll get back to you.

[Cadaverous Pallor]

Good news!

[scaeagles]

Well.....seems unimportant really in the light of Capt Jack's tragedy, but my saga continues.

I went to see a surgeon today (got postponed from the 23rd). The insurance company, in looking for a qualified surgeon, found this surgeon. Unfortunately, when looking, my case manager was looking for a surgeon who could perform the surgery I already had. So I went, spoke with him, and upon looking at my stuff and talking with me, he told me he wasn't qualified to do what I need. And he suggested....the doctor at the Mayo clinic that was suggested to me already and the insurance wouldn't cover. He also suggested the surgeon at USC medical center.

So....I called my case manager. She was a tad embarrassed. I'm taking more steps backwards than forwards it seems.

One other bummer.....the surgeon I saw today seems to think I need a radical surgery involving using part of my small intestine to replace my esophagus. I am hoping a different surgeon will have a differing opinion. I think I'd rather have a feeding tube, frankly, than go through that.

Sigh.

[Ghoulish Delight]

Originally Posted by scaeagles

I think I'd rather have a feeding tube, frankly, than go through that.

scaschaivo!

[Motorboat Cruiser]

Sorry to hear this, Leo. I also hope that there is a better option than the radical approach you mentioned.

Hang in there.

[innerSpaceman]

Wait, Leo ... I'm confused. "Radical" as the surgery may be, would not replacing some esophagus with some intestine provide somthing akin to a permanent cure?

If it's not too painful to discuss moving your various body organs around in a Frankensteinian manner, please educate me on the pros and cons of treatments that are offered to you.

[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.