Cleveland Clinic update

Here is my latest scoop:
I am extremely happy with our decision to go to CCF (Cleveland Clinic Foundation).  I feel like we made more progress in 5 days than we did in two years here.  I finished the trial of the spinal cord stimulator, and I am going to have the permanent one implanted.  It improved my chronic abdominal pain by about 80%, it did not help with digestion or the pain and nausea that comes with eating, so I still have my PICC line, but I am working with a local surgeon to either get a peg tube in my stomach, or a gastric pacemaker.  If there is anyone out there that has either one of these and could offer some feedback, I would really appreciate it.  The PICC is just a systemic infection waiting to happen, and I have developed a severe hatred for it and the nightly TPN.  I am scheduled to head back to CCF the end of July.  I will post another update after that.

 Hey Jules,


I sent you a private message- Glad you went to Cleveland. I hope that you get some resolution to your issues.

Amy H

Hi... Can you tell me who you saw at the Cleveland Clinic? My friend just had a horrible experience there  and walked out againes MA. Her regular doctor at the CC was on vacation this week :(

She is dehydrated, has an ulcer, can't keep any food down. Im afraid for her.

sorry to hear about your problems i just joined today because i am 2 years out and i am having unanaswaerd health issues so good luck and you have made me feel that i am not crazy.  




                        joanne