Wow! Just on the up side you are number 9!!! When I went to the Mayo Clinic they told me I was one of 8 people that they had seen with these problems so you must be number 9. Anyway, when the first surgeon that I had put me on TPN also and just left me there. He wouldn't return any of my phone calls or the other doctors phone calls. If you lived in my state I would swear we had the same doctor. When you had your revision did you get a gastrectomy? I did. I have chronic pain everyday. Either from the scar tissue from the surgery or scar tissue from the feeding tubes. I as you did felt better for about 7-8 months then I began vomitting in my sleep. I'm not sure if tat is happening to you yet. And because of that that I keep getting aspiration pneumonia. Dr. Raper (the second surgeon) went back in to do another revision hoping that if he lengthened my limb that gravity would keep the vomit down which would prevent the aspirations. It worked for a short while and then since July it had been getting worse and since July 31st through second week in October I was hospitalized for aspiration pneumonia. Dr. Raper is one of the best gastrosurgeons in the country and he is at the University of Pennsylvania. He has a reputation of fixing other doctor's mistakes. He sat down with a group of 14 doctors to discuss me!! And the only two solutions that they came up with was 1. Sew off my esophagus and give me a permenately feeding tube or 2. Sew off my vocal chords and give me a permanent tracheotomy. None of which sounds appealing or fun to do.

my primary doctor thins that if I go on a high protein low carb no sugar diet and lost weight that would put less pressure on the diaphragm and it won't push on the chest cavity causing me to aspirate with continuing to sleep elevated and no eating 4 hours before bed. We don't know how that will work because we don't know how I gained this extra weight since I don't eat much and I have no stomach or duodenum. Since August I have only lost 5 pounds which is depressing but I have to keep taking steroids for the pneumonia and I retain fluid on that and it's a vicious circle not to mention that the prednisone has given me cataracts and insulin-dependent diabetes. But on the good side I haven't aspirated. So we think that maybe my body doesn't know or doesn't remember how to digest carbs. And I also have been diagnosed with central sleep apnea, different from obstructive sleep apnea. The specialists feel that when I was in the coma I must have had a small stroke that caused that. So she feels that by using a bi-pap machine at night that too may stop the aspirations. 

Im so sorry that I wrote you a book but I've been through so much and done so much of the testing that if I could save you from getting one more test or if you can learn something from my experience to help you, it would make my searching for answers worth something even if it can't help me.

good luck and please keep me updated. I haven't seen any posting from you in a while and I was really worried. 

Danielle