Posted 06 March 2008 - 08:12 PM
I have bad acid reflux with Demister score of 82
I have severe esophageal motility and food moves down only through gravity
I have fluid back flowing to my lungs and impacting my lungs
The final say is with the surgeons and Dr. Patti (UCSF) and Dr. Asbun (Walnut Creek) are very reputed surgeons and I truly believe they have my interest ahead of any decision they make. Both of them are reluctant to go through surgery as both believe I have chances of worse off after the surgery. I am badly hurt by the recommendations as I am looking forward to get handle on the problem.
I am willing to take risk of the surgery, possible issues with swallowing, if necessary go through reversal, if it does not work, and also be on disability for several months. I have conveyed my views, but Dr. Patti believes scaring of esophageal tissues due to surgery and surgery reversal can be very damaging.
I am really thankful to Dr. Patti for his honesty and the recommendations which are not easy for me to swallow. His recommendations are go to UCSF and convince the for the surgery. If it does not work, go to Dr. Demister senior at USC (Yes, the doctor who invented acid reflux score â€“ the Demister score) and convince him.
Yes, I see the light at the end of the tunnel whether it is soothing sunrise/sunset or scorching heat of desert.
At least I am thrown back to my depression cycle and trying to climb back.
Thanks for listening.
Posted 07 March 2008 - 02:03 AM
If this is any comfort to you or will help in your final decision then it will have been worth my writting to you.
I had a Nissen fundoplication (full wrap) in 2004. My problems were as yours and I had no hesitation back then to agree that this was the best possible decision to make. I went ahead but almost straight after I could not swallow at all. I went through several months of pure torture, losing a vast amount of weight and then having the whole thing re done as a partial wrap -- to no avail. I now have a PEGJ feeding tube in situ. That is just about as bad as it get's. The good news is that it can be reversed and that's exactly what I did. My esophagus has very poor motility and I still can't swallow too well, meaning I still have my feeding tube. But I also have a huge decision to make myself because I now have problems with reflux again and I could easily choke. The doctor thinks I shpuld have whole procedure put back to a partial wrap to stop liquids refluxing back into my lungs. Basically do I risk choking, pneumonia or have the procedure put back.
These are all questions you need to ask yourself. Not everyone is the same and I know of many who have had this procedure with great success. My tendency at the moment is to agree with the doctors --- better to be on my feeding tube than choke to death or die of pneumonia.
Your decision my friend! It will work out no matter what you do!
Posted 07 March 2008 - 03:31 AM
I had a full fundoplication done laproscopically last year. I only stayed one night in the hospital (my choice because I felt so great). When I got home I only needed to take 2 x 1/2 Percocets because the pain was so minimal. I was able to eat things like yogurt (no fruit bits tho'!) right away and by the time 2 weeks had gone by I could comfortably do everything but meat and bread - they needed another week.
I haven't had any of the problems they told me might occur and I can eat anything, lie flat, bend over to tie my shoes, you name it. NO reflux!
The operation was a lifesaver for me, but as my primary GI doctor says, you really need the best surgeon to get the best results. If you want to email me I'll tell you who did my surgery and where.
Posted 07 March 2008 - 08:42 AM
I am REALLY grateful you posted this thread, as I've been experiencing the very same during the same time frame.
My internist wanted me to see a gastro... I did and though I was SO disappointed, I told him I REALLY appreciated his sincere honesty. He told me that no "good surgeon" would even consider performing this surgery on me. He also told me that if a surgeon agreed to do the surgery, he wouldn't send me to said surgeon. He "reassured" me that he knew that the problems I am dealing with are very difficult and that he would give anything if there was an "easy fix"... but there just aren't any at this time. I know I was transparent with my feelings, as he looked at me. I also feel confident that he is an excellent dr. He reiterated all that I am aware of, in regard of things I can "do" to "help". At any rate... the problem exists, but I also remembered all that Barbs went through and I wish that could all be different than what it is... for her.
My rheumatologist, whom I trust completely... doesn't want me having any type of surgery... unless my life is threatened. As a matter of fact... that is the concensus of ALL of my doctors.
So... here we are! kamlesh... please know that there are those of us who really empathize with you.
JJ, I am so HAPPY that your fundoplication worked well for you... I'm just hoping that one day, there will be something that can be done that I can have done that my doctors will feel confident that won't put me in the throes of danger.
Posted 07 March 2008 - 02:34 PM
Barbara, you made my day! My sincere thanks to you. I have one more appointment in UCSF to seek opinion of Dr. Campos. If that does not work, I will change my lifestyle further and stop surgery route.
JJ, congratulations for your successful surgery. The success rate of complete Fundoplication is above 95% while the success rate of partial fundolication (270 degrees) is about 50-60% according to Dr. Patti. In my case Dr. Patti wouldnot go beyond 240 degrees, so the success rate will be less than 50%. I really like Dr. Asbun who is local surgeon here. Reversing surgery is not an easy process and can scar esophagus pretty bad. His statement was â€œHe is glad, I am willing to take risk, but if something goes wrong, He will feel very bad, knowing all risks why did he do the surgeryâ€
So next week, I will know final outcome!