ROSE vs. RESTORE trial

I am currently working through both clinical trials to see if i qualify for either. My stoma is dilated (confirmed on UGI), so there's a chance i may get into both. If so, what would be the advantage of one over the other?  The RESTORE is randomized, so there's a chance I may not get the actual procedure, but it says at the end of the 6 months they will give it to you for free. Does this alter your pouch and stoma or just your stoma? The ROSE procedure is definitely the procedure (not randomized) and it does the pouch and the stoma. However, it looks like they will cover 13-14K of the "bundled" price- does anyone know what the bundled price is? I'm waiting to hear back from both places and know I'll need to discuss this with them, but everyone here is so knowledgeable, and I appreciate the insight from people who have been where I am!  Thanks!

I don't know the cost of the ROSE procedure,  but I think for me it would depend on how much I had to lose and what the surgeon said my outcome might be.  Since you have to pay for the ROSE I would make sure you really know what kind of success you may or may not have....and see if you can talk to other patients your Dr has done.  You shouldn't have to pay to be in a study, so I am assuming he just does the ROSE on patients so you have every right to ask what his outcomes are like. good luck.

I'd go for ROSE. This one seems like the better option to me.  In fact, I was a candidate until the surgeon saw my upper GI films and diagnosed (finally!) my staple-line disruption.  My pouch had stretched but we're pursuing revision. I just like the fact that both the stoma and pouch are revised with ROSE, and I don't think you get that "Oh, you were in the control group and can back in 6 months!" thing.  As a former academian who helped with physiology studies, I know the value of a control group.  I just don't want to be in one. I don't think there is a control group for ROSE at the moment.  I could be wrong, but I think everybody gets it if they qualify and are accepted.

Hi Supergirl- Is it EROS or ROSE?  I was trying to get into the EROS study with Dr. Bessler at Columbia in NY.  I live in Cleveland so travel would have been a factor but I was willing to do it anyway.  They never could give me an idea of how much out of pocket I would need to pay since insurance almost certainly would not have paid for it.  In the meantime I looked into RESTORe.  They were doing that locally  at the Cleveland Clinic and it was a much better option for me.  After I had my EGD it showed that although my stoma was 3cm, my pouch was still "normal" (4cm x 3cm) and I wouldn't have qualified for EROS at that time anyway.  (I think since I pursued it,  they have a new tool that can work with shorter pouches now).   I just had to pray hard that I didn't end up being in the control group with RESTORe.  I'm almost 100% sure I had the procedure unless they brainwashed me somehow..lol.  I have restriction for sure and I've lost 38 pounds since Nov 6.  I'm motivated and sticking to all the RNY rules again.  

Lullaby! Weigh 2 go on the weight loss!  Those are awesome numbers for any procedure and especially since your time spanned over 3 major food Holidays!  That's awesome.......and very cool that you're feeling restriction.  Who cares if it's actually been done or not ....it apparently is working!

Thank you Joyce!!  It was a struggle for sure getting through those holidays but usually just a taste of something satisfied me.  I'm determined not to sabotage this procedure.  CONGRATS to you too...I saw on another post that you've already lost 22 lbs??  My goodness girl!  You're going to reach goal very shortly!  Way to go!!! 

Hi - I am having the restore procedure in Milwaukee on January 23.  Has your weight loss been as easy as after having yout initial WLS or are you having to do all of the work yourself?

Hi JS- I'm not really sure how to answer your question!  If you mean is the weight coming off as quickly as it did after RNY, then no, it's definitely not as fast.  Of course I weighed more when I first had my RNY and there was much more of a dramatic change in eating habits the first time around.  I think I still have SOME malabsorption but not as much.  I've been very compliant since I had RESTORe so I'm sure the weight loss is due very much to my food choices.  The difference though is that I have much more restriction since Nov 6 so I'm not nearly as hungry and of course I can't eat even half as much as I was before.   Since I got the caffeine, sugar, and carbs out of my system I've been very careful not to reintroduce them.  I've had a couple of crackers with my chili or tuna,  or a tiny taste of chocolate here but the emphasis is on protein.  It's not the calories I'm worried about-I just don't want to get addicted to carbs again which I know are my weakness.     Best of luck on the 23rd especially because you're in the lead in procedure and you KNOW you're having the procedure done!  Keep us posted

Lullyby & Joyce - How did you feel on the first couple of days after the procedure?  Will I feel up to traveling 6 hours by car (husband driving) the day after the procedure?  How difficult will it be to follow the two days of clear liquid, especially while traveling? Thanks, Betsy

Betsy- Joyce had major surgery so she'll give you a different answer than I will! You should be fine to drive home the next day.  The only complaint I had the next day was a severe sore throat.  Make sure you have some liquid tylenol handy for the trip home and later if you need it.  As far as liquids go, have your hubby buy you some SF jello (and a spoon!)  that you can eat on the road as well as bottled water, and maybe those crystal light singles that you can add to bottled water.  I drank chicken and beef broth (yummy) but you may have a hard time doing that on the road.  Physically I was not hungry at all for those 2 days but I was still working thru carb withdrawl so I had the head hunger, but not enough to have something I shouldn't.  I was and am determined not to sabotage this. Good luck-I'm sure all will go well!