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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?
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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.