Monmouth Rose Inital visit complete

Hi all...             I wish I was coming her ina happy mood but somehow I am sitting her crying....Guess nothing just seems to be going my way these days and it i taking a toll on me emotionally. I went for my intial visit for the ROSE trial this Am...Everything seemed to go well and was told that I am a REALLY good candidate, however there is only 1 slot left and many in the running...they are actually tring to get 20 more approved at this point.  They are still going to call me back so I can have an UGI done and was told ro go have labs done, but was told that if I dont get in the cost of the procedure will be $13, 000 and that is NOT an option for me right now..... I wouldn't even be in this perdicament if my normal surgeon would push my revision thru my insurance, which by the way it seems as if he has yet to do no matter how many times I call....But that isnot the point...I REALLY REALLY wanted to be in this study and I dont think I will get that lucky, I'll jump thru hoops if would help but I guess I'm not that lucky... So all I can do is keep my fingers crossed...I'm off to my PCP to get a script written up for blood work and maybe some xanax while I'm at it!!!  Sorry don't mean to be such a mess.....

I'm so sorry.  Maybe you'll still get in! I know first hand how devastating it is.  I was in the clinical trial in Cincinnati in March - they were underwriting the cost for 20 people (I was #2).  I had my EGD done in Dec. and was told I was a perfect candidate.  Then  I travelled to Cincinnati for the ROSE (I live in Chgo).  An hour into the procedure they had to stop - my pouch was too small so the tool couldn't pass it to get to my dilated stoma (which is my problem).  When I came to and they told me they couldn't complete it I was begging them to try again.  I need to lose the weight and this was free - I can't afford the $13,000.  So for the next 2 weeks I was so depressed - I could barely function.    Now, I'm looking into other revisions - will have to take out a loan after all (since I know insurance won't pay for it).  Hang in there.  Another door will open for you.  You have to believe!  Let me know what happens.  Carolyn

I AM SORRY TO YOU THAT.I HAVE BEEN WAITING 3 WEEKS FOR THEM TO CALL ME AND THEY STILL HAVE NOT CALLED.I CALLED THEM LAST MONDAY AND WAS TOLD THEY HAD SLOTS OPEN.SO HOW WILL THEY DECIDE WHO GETS THE SLOT?DO YOU KNOW HOW MANY SLOTS WERE OPEN? DONT GIVE UPSOMETHING WILL OPEN.     TAKE CARE DANA

Thank you....I do know that currently there is only 1 slot open and there were at leat 15 other appointments today from looking at the list....and when I saw their nurse practitioner she stated they are trying for the ok to allow 10 to 20 more....

I know this is hard on everyone...It just doesnt seem like anything is going right these days and this wasn't even a smack it was a kick in the face.... So like I said...I'll just sit back and wait for the call.....

Being the nosy person that i am,   i spoke to the docs.  I showed Dr Gorcey your post.  I hope you are sitting down. It turns out, that the first case that was done was considered a "run in" case and Not counted for the registry. Guess what that means. ? Yup !  If you measure out on your endoscopy, the 20th and final slot  IS YOURS ! hope that cheers you up a bit.    Also remember that this procedure is EXTREMELY operator dependent, so dont let the post from the cincinatti patient  get you down. ALL the patients done by Dr Gorcey and Borao are showing SIGNIFICANT weight loss averaging about 25 lbs the first month. GOOD LUCK !!!!!

HI LITTLEGUY. ARE THEY GOING TO BE OPENING MORE SLOTS FOR THE CLINICAL TRIAL. I HAD GIVEN THEM MY NAME ABOUT 4 WEEKS AGO.I CALLED THEM 2 WEEKS AGO TO SEE IF THERE WERE MORE SLOTS OPEN AND SHE TOLD ME YES.AND THAT I WOULD BE CALLED SOON,AS OF TODAY NO PHONE CALLS YET. DO YOU KNOW IF THEY ARE GOING TO OPEN MORE SLOTS?          THANKS DANA

definite maybe. The official line is they wont know until after they have DONE their 20th. The unofficial hearsay is that because the docs results have been so good, they are thinking of letting them do a few more. The number 30 is floating around but nothing is definite. I know they are gearing up to start doing cash pay. The number being floated around is about 13 K. Once  they publish some solid data, they might be able to use it to sway insurance companies. I heard they have 2 surgical residents, one medical resident and 2 medical students working on the papers as we speak.

Talk about wanting to give someone the BIGGEST HUG AND KISS!!!!!!!!!!!!!!!  I CAN NOY BEGIN TO THANK YOU ENOUGH Little Guy !!!!!!!!!!!!! Now my fingers are all crossed for Friday....

actually i cant take all the credit.  Dr G and Dawn already had decided to give it to you. apparently im not the only one who scans the message board. Good luck friday !