Stomaphyx, EROS, Transoral Repair

Hi everyone, I was wondering if anyone can give me a basic explanation of these procedures?  I need to explain them to someone and I am not doing a very good job.  I am not sure what the procudre name from the RESTORe trial is called, other than Transoral repair, does it have an official name? thanks!!

Stomaphyx is done through the mouth with a scope-like device.  It "pleats" the stomach pouch so that it holds less food. EROS is also done through the mouth and reduces both the size of the stomach pouch with pleats and also reduces the size of the stoma (which is the outlet into the digestive tract).  In many of us, the stoma becomes enlarged, allowing food to leave the stomach pouch too quickly.   In my case, the stomach pouch is still small, so I need the stoma reduced. Transoral repair simply means that the surgery is done through the mouth instead of opening the abdominal cavity.  No cutting through muscles, virtually no bleeding, faster recovery time, less trauma, etc.

I'm participating in the RESTORe clinical trial and I don't know of any official name for it yet.  The procedure I am doing only tightens up the stoma-it does not do anything to the pouch.  The stomaphyx and the EROS tighten up both the pouch and the stoma.

How can I learn more information about the clinical trial? You are the second person I have seen mention it.

Here is the link for the clinical trial http://clinicaltrials.gov/ct/show/NCT00394212?order=8 If you scroll down you'll see an email address-email them and tell them where you are in the US and they should get back to you shortly.  It took about a day or so to hear back.  I know one of the hospitals that is participating in this is in NYC but I'm not sure exactly which one.  I'm in the Cleveland Ohio area and they're performing it at the Cleveland Clinic.  I think there are 10 or 12 other hospitals around the U.S. doing it.  My procedure is scheduled for Nov 6.  Good luck!

Can you share the time line from  first contact to getting a surgery date?

I had my first contact with the research nurse on Sept 11 (about 2 days after I emailed for more info).  From there they asked me a zillion questions and scheduled an upper endoscopy.  You would also need an upper GI done but I had just had one a few weeks prior so we used those.  You need to get your operative notes and discharge summary from your surgeon.  The fastest way is to have them faxed to your research nurse-don't try and get them yourself..it's a total nightmare and it takes way too long.   Anyway...I had my first contact Sept 11 and after several other appts (psych, nutrition, etc etc) I am scheduled for Nov 6.  They say they have time constraints on how long they have to complete this so they don't make you wait too long.  There is a catch with this trial though.  Only 2 out of 3 people will actually have the suturing done.  Everyone is put under anesthesia and scoped, but you won't know until at the end of 6 months whether or not you had it done.  If you did NOT have it done, then at that time they will give you the option of having it done for free.   Let me know if you pursue this!

So your stoma was found to be over 2 cm?

Yes, it's over 3cm actually.

thanks for the information, and to everyone else *****plied.  I appreciate it.  I will keep in touch with my progress if I am accepted into the study/ I am waiting for some info to arrive via mail about the study, but it does sound positive.