RESTORe

I was scheduled for my Endoscopy today at 10:30, with the DR and NUT and Psych screenings next week, Received a call this am at 8:30 from the Johns Hopkins coordinator that the trial has been closed nationwide!!!  No real explaination other than she cannot file one more patient file.  She did offer me the information that the Dr. offers the Stomaphax procedure if I was interested in paying,,,,,,,,, Already had my UGI and it showed a large opening.....so now what????

I had restore back in December 2007 it was great while it lasted but only lasted 6 weeks.  I did everything by the book.  My understanding is that it did not hold for more than it did.  I am having the lapband put around the bottom of my pouch to fix the enlarged stoma.  My surgeon did the restore as well and he told me when I saw him the end of last week that the trial had been closed nationwide.  What now??..... DONT GIVE UP.....now you know what the problem is you can find a surgeon who can fix it.  There are options you just have to search for them.  I don't know about the stomaphax I did look into it briefly but after disappointment with restore I wanted to go with something that had been around a bit longer.  However, you will need to find what is right for you.  Good Luck.

I got the same call this morning. I was scheduled for my Endo on the 12th pf Feb....Doubt my insurance will pay for Stomaphyx, nore do I want to pay for something that may/may not work.

Sorry to hear that you received the same news.  I am not looking to pay $10,000 or so for the Stomaphyx.  Too bad we were on the tail end of this!

I just spoke to Kamilah right before I read this (I've been approved for the study but she is supposed to give me my procedure date).  She said nothing about the trial being closed.  She said she would call me tomorrow with a date.  I have already had all my assessments, including endo, and all I was waiting on was a date.  I wonder if they are going forward with all those who have already been qualified for the study. 

My understanding is, if you had already signed your consent and had begun the screenings, you are good to go, Since I just had the UGI and was supposed to turn in the consent this am, I am out! No hope for inclusion at a later date. There have been other posts from folks *****ceived the same bad news about the trial being closed in the last week. Best of luck to you!

I really hope that is the case, since I signed the consents and especially since I went through the rigors of the endoscopy.  Not to mention the 6 hour drive each way from NC.  I just hope I hear soon to put me out of my misery.  I'm sorry for you and others who didn't make it that far.  :-(

[No hope for inclusion at a later date.] Why would there be no hope for inclusion at a later date?  I don't understand.

I got the impression that there are to be no new patients in this trial.  And it won't be extended since the limits for participation have been reached.  I would think that all the grant money is allocated for the patients in the que for this study. Hey next time you are back in Baltimore, let me know.  If I can, I''ll meet you for lunch or something. Are your followups at Bayview or Greenspring/Falls Rd? Laura

Laura - My weight management/nutritionist follow-ups are in Greenspring, but the procedure and the psych is at Bayview.   I look forward to going to Greenspring because it means I can take a side trip to Wegman's in Hunt Valley.   Where are you located?