Endostim Surgery Scheduled for 5/22

Hi GC good luck hope it helps solve your problems. Look forward to your progress info. Take care Rita

Happy for you also. Glad the science will come together nice for you.

Can you please share whether the Stretta Method was suggested as an option too? And if it was, why did you elect for endostim instead?

Thanks and good luck!

Hi GC,

Good luck on your German adventure. The Endostim sounds like a very promising treatment. I hope it will come to the U.S. sometime in the near future so people will not have to fly to other countries to get the latest advanced treatments. I look forward to hearing how everything goes for you. Best wishes.

Thanks everyone! I'm in my hotel in Castrop-Rauxel Germany right now. One day of exploration, one day of hospital prep, and then the surgery on Thursday- wahoo!

As to the Stretta, interestingly, none of my specialists ever suggested it. Brian Louie's blog said they used to perform it and stopped due to poor results. On the latest update I saw in 2013 for a 20 year follow-up: 58% of patients were off PPis afterward because the needle applied radio frequency either strengthened the muscle with scar tissue and/or killed the nerves causing the disfunction. I think those 58% of folks for whom it worked must be very happy, but it would stink to be in the other group. Also, I don't love the idea of scar tissue and killing nerves if there's a way to retrain and maintain what I already have. I guess I wanted to go for the gold with Endostim: slightly greater risk due to its newness, and definitely a greater expense due to travel, but I think the potential and chances of a better outcome made it the preferable choice for me. Time will tell...

Hi grover cat, looking forward with interest on your updates. Could you provide us with. Background information on your symptoms and results of the tests which you have had done to diagnose your condition. Also out of interest , how much does the op cost as in the uk it cost 17,000.00 , just to compare.

Good luck

Jamosca

Sure- here's my symptoms run-down:

Approx 4 years of periodic PPi use before they stopped working very well a bit over a year ago (5 years total since diagnosis).

I'm a female, treated from age 25-30, and I'm in athletic shape. Apparently I'm blessed with unlucky genetics as my dad's brother, his father and his uncles have all had their esophaguses stretched multiple times, as had my mom's father, due to reflux issues.

Varied GERD/LPR symptoms: It took a while for me to learn what my problem was because my first symptoms were non-traditional GERD problems (at least so far as I knew then) in the form of a chronic cough and shortness of breath, and greater than average belching.

No visible hiatal hernia

Since then over the last two years I've had the pleasure of a burning throat, lump in throat, regurgitation, belching, nausea, sinus irritation, chest pain, and most recently, some pain and difficulty swallowing when things get bad. No one day is the same- some days I feel well, others give me some combo of these things. I'm currently on 120 mg Dexilant (up from 60 mg as of 2 months ago, but it's not really all that much of a change). PPis are necessary currently, but it does limit what kinds of foods I can digest well.

My tests showed Grade A esophagitis paired with a BRAVO that stayed just one hair on the side of "normal levels of acid." The esophagitis told my doc that the BRAVO readings were either a false negative or else I had a highly sensitive esophagus and the official scale didn't work as well for my body. My manometry was pretty sad while off PPis with something like 30-40% normal swallows, which came as a huge surprise and disappointment to me as I'd been hoping for the LINX at the time.

I was advised against the LINX by my doc, and I ran across the Endostim link on Healing Well. I researched it, liked what I saw, and emailed the surgeons listed on their website. Their primary surgeon in Germany, Dr. Henning Schulz, got back to me, looked at my test results, and said I was a go, so here I am. My LA doc who'd advised against the LINX due to manometry said he approved of the Endostim plan for me (he'd actually done the initial animal studies before selling the patent).

In Germany the package deal for me, including a car from the airport (!), tests, five days hospital stay, procedure, 4 week follow-up, came to 15,000 Euros.

A lot of money, certainly, but the equivalent in the US would have come to a lot more given that my insurance wouldn't even pay for the LINX, and definitely wouldn't for the Endostim even when it does become available.

I'll be happy to chronicle my experiences here in case they help someone else like they helped me.

GC

Sure!

I sent it all in English. Endostim can be compatible with pregnancy-- currently the policy is to turn it off in the event of pregnancy (while keeping it in and ready to be restarted), but that's mainly because nobody's been pregnant with it yet, and it may not be necessary. It's kind of a preliminary safety measure. For women (like me) who want to become pregnant at some point, the surgeon places the battery pack higher up in between the ribs so as not to interfere with a pregnant belly. That's what I've been told anyway- pioneering my way forward. He said he's done that placement for four other young women.

Hi GroverCat, Welcome to Europe!
I just logged in to wish you the best of luck with your op on Thursday.
Cheers

Phil

Hello GroverCat! It is great to have news from you!
I wish you fast recovering! It is so good that you don';t take PPIs ! Hopefully they will stay in past and you will forget about them for ever!
I'm glad to know that they repair hiatal hernia if it is needed because it is very often thing with GERD...

Hugs to you! Thank you so much for sharing!

Hi Grover Cat,

Have been thinking of you, am thrilled that the operation has gone well and that you are on the journey to a good recovery.

Hope you are resting up and looking forward to getting home, and back to a normal life again!

Pink

Hello GroverCat,

I am extremely intrigued by Endostim.

I'd researched this a couple of years back and had even cold called one of Endostim's management executives - who at that time had indicated that it was too early for me to try. I've since been doing ok on 20mg PPI, so haven't followed up to get a more permanent cure.

Endostim to me - always seemed like the most elegant solution. It addresses the root cause of the problem - the LES - instead of the symptoms (PPI) or brute-force (fundoplications).

Please correct me if I am wrong but:
- The operation is fairly non-intrusive - right?
- One does not feel that the device/leads are attached - right? So, you can easily go ahead and do normal activities with it - such as running, swimming etc.?
- Plus, I believe this will also retrain the LES. So, its possible that you may not need it beyond a few years?

Were there any inclusion criteria that you can share here? Plus, any news on when the trials in the US can start?

Thanks

Hi GC,

I'm really glad your procedure went well. I hope you have a quick recovery.

Did your doctor talk about how you should handle follow up care? Doesn't the device need periodic checking and adjustment to program how often the stimulation is applied? When you are back in the U.S., is there someplace here that can do those things, or would you need to fly back to Germany?

Do you know what method they used to repair your hiatal hernia? Was it with a suture to the stomach or some other method? Did the doctor discuss ahead of time that he would do a hernia repair if needed?

speden