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EndoStim Procedure in Germany this summer

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GERD & Acid Reflux
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Posted 9/12/2017 5:19 PM (GMT 0)
PuppetMan,
Thanks for your response. My issue is plain old, garden variety GERD. I'm glad EndoStim has changed your life. I'm hoping that it does the same for me. Based on your blog I've basically decided to have Doctor Fuchs in Frankfurt perform the EndoStim implant procedure. I've been in email contact with Tahani al Barghouti, the coordinator for non-EU patients, over the last few weeks. She's answered all of my questions quickly. I see my GI doctor tomorrow (9/13) to set up all of the tests. I'll ask for the Bravo test.

I just found out that the 24 hour monitor test will require me to be off Prilosec for 7 days!! Yikes! I'll be eating Gaviscon by the mouthful. Of course, a couple of days before the test I'll have be off them also. ARGH. How did you get through that timeframe??? Any hints? I'm dreading it.

Thanks,
Mark
Arlington, VA
Posted 9/15/2017 5:39 PM (GMT 0)
Hi Mark,
The key is to keep on a wedge or incline. Sleep on back or on your left side only on the incline. A recliner chair can be a best friend.
Posted 9/17/2017 3:39 AM (GMT 0)
MarkF, can you not participate in the US trials? I just had the device implanted in Florida
Posted 9/19/2017 9:23 PM (GMT 0)
PuppetMan, I have an incline pillow. It'a wedge of foam covered with material from a sheet. It's 4 inches high, 30 inches wide and 36 inches long. It's as if I've raised the head of my bed 8 inches. It provides only a moderate improvement. I have a reclining chair that I use at the computer in our den. I'll be spending my nights in it! Btw, the 24 hour ph test won't be the Bravo test, but the probe that threaded down my esophagus via my nose like you had. YUCK! Luckily my GI doc has prescribed some vitamin "V" - valium for the rough times. I'll take Valerian root when I want to sleep. I know not to mix these two "drugs." One last question: did the hospital give you a card that tells airport security that you have an implant?

Dash73, I've investigated the trial, and have talked with the doctor at Virginia Commonwealth University hospital in Richmond, VA. My big concern is the requirement that I'd have to stop taking Prilosec three times during the six month trial! nono The first suspension would be dependent upon how I feel. That is, if my symptoms return I can restart Prilosec. The other periods without Prilosec, at three and six months, are for 10 days! I'll have issues getting through seven days without Prilosec!

Post Edited (MarkF) : 9/19/2017 3:29:51 PM (GMT-6)

Posted 9/20/2017 3:02 AM (GMT 0)
Mark, I sure understand your reticence. I could barely stand going without the Prilosec. I was so sick, hurting so terribly. I was chewing Tums 5 at a time and drinking Alma-Seltzer like iced tea. BUT, since having the device implanted, my symptoms have gone from 10 to 1 on a scale of severity.The very worst was the pain the first four days after surgery. It hurt to breath! If you have the funds to pay for your own procedure, then by all means, do it. you will not regret it! Because of several tragic deaths in my family, I am choosing to be a "crash test dummy". It's the very least I can do for medical techology.
Posted 9/20/2017 3:15 PM (GMT 0)
MarkF, You get a card that shows you have an EndoStim implant. I travel extensively, and there is absolutely no problem going through routine airport screening. The warnings are precautionary near as I can tell, so don't worry about it. After a lot of travel, at my last appointment, the results were downloaded from the device and confirmed that there is no problem with airport security screening, body scan or metal detector.
I do HIGHLY recommend you get a RoadID or other means of easy identification you have the implant incase of an accident, since an MRI could create real problems. I carry the EndoStim card, and wear a RoadID bracelet, which I have linked to their online emergency data page, so a first responder knows i have it when they look a the bracelet, and then can download the EndoStim manuals, both patient and medical professional, so they know how to deal with it.
With regards to the "preferable from a readings perspective" down the throat tube, have fun with it. find a way to make it an adventure, helps reduce the stress. I went to my favorite coffee shop and we tested various brewing methods to see if we could detect differences in acid levels as I swallowed, since mine had a meeter with a readout. We did confirm the cold brew was lower acid. With everyone in the shop around, we made it an event and my coffee was free. Helped the stress out of having it. (Did have a bit of reflux, but for one night, I knew I would suffer anyhow from the acid.)
Posted 9/23/2017 5:39 PM (GMT 0)
Dash, I'm down to 20mg/day of Prilosec as I start the "8 days from hell" on Monday, September 25th. My symptoms aren't that bad, surprisingly, considering that I was on 60mg/day of Prilosec. My main symptom all along has been excessive salivation when I lay down. I have that all of the time now. Also, I have some heartburn, some non-cardio chest pain, etc. But, I had 2 rather major erosions when I had the endoscopy last December. That's when I started on 40mg/day of Prilosec. My GI doctor raised the dose to 60mg/day about 2 months ago whe 40mg/day wasn't enough. I have a follow up endoscopy in mid-November. My GI doc wants to make sure those erosions have healed. Fingers are crossed.

Puppetman, if I get the implant I'll definitely keep the EndoStim ID card at the ready. I checked out the RoadID website. I'll definitely consider it. I don't know if the sensor will have a readout on the data recorder. I'm dreading it a bit, but your experience with it makes me feel that it won't be that bad. BTW, how did sleep with it? Where did you place it when you slept? How did you prevent yourself from pulling it out when you slept? How long was the wire that runs from your nose to the recorder? I was thinking I'd hang the recorder on the wall above the bed. I'll patch the drywall afterward, and paint over the patch.

I really appreciate your feedback. I'm hoping that my condition is bad enough that Dr. Fuchs says, "come to Frankfurt so we can implant EndoStim"!!!!

Please keep me in your thoughts. I appreciate it.
Posted 9/24/2017 9:48 PM (GMT 0)
Puppetman and Dash, last night I had a buffalo (bison) burger and a kale salad at Ted's (Ted Turner's restaurant chain). I had zero symptoms of GERD. What gives?????
Posted 9/25/2017 8:55 PM (GMT 0)
I had a similar experience, until I went sleep...almost an hour of uncontrolled reflux. Part of the 24 hour monitor is to confirm the cause of the problem, and assure it is not caused by something else. Medications can create need for continued use. (Feedback loop syndrome I call it, low acid level causing body to compensate with more acid production.) Being off of them for a test often allows one to go back to a "neutral" position for evaluation. What did it look like for the full 24 hours?
Posted 9/26/2017 10:16 PM (GMT 0)
Puppetman, I had to take a TummyZen tablet. This is an over the counter antacid developed by scientists at Yale. Like prilosec it reduces the production of acid. I tried 3 Gaviscon tabs but they helped for only a few minutes. I ended up taking valerian root to get to sleep. ARGH!!!!

I understand that med create circumstances that require the med! For GERD it's called "acid rebound." I suffered that when I tried to go from 40mg/day to 20mg/day. Foolish me!
Posted 9/30/2017 9:24 PM (GMT 0)
Hi Puppetman and others here!

Just wanna know what was the time betwen your first contact (mail?) with the hospital and your operation, please? Thank you!
Posted 10/2/2017 2:30 PM (GMT 0)
Hi Davidoff51,
The time between my first contact and the procedure was about 5 months. I scheduled my visits with the doctor, and surgery, around an upcoming business trips, which added some delay. I wanted to first met and "interview" the doctor to be sure I was comfortable with him, and the hospital, before scheduling the surgery. I also set some time to explore other options, just to be sure I was making the right choice. The time between contact and surgery could have been much shorter.
Posted 10/2/2017 2:37 PM (GMT 0)
Hi Puppetman,

Glad to see you are still on here!

It means a lot for you to share your experiences, so thank you for that.

I was curious as I wanted to know if you happen to know how much your les improved? Was it an increase in the basal les pressure? If so, do you happen to know incrementally how much, or what your les pressure was before or after the procedure?

Thanks for the info - I am looking into getting this procedure done as well!

Cheers!
Posted 10/2/2017 2:52 PM (GMT 0)
Hi iho,
The sphincter in my case is working properly, and do not seem to have any problems with it. I am off all acid medications. I have not repeated the swallow tests to see the difference in the basal LES pressure. Given the cost of the tests, and no pressing demand to know, there has been no need to pend the money. From what I can tell, there is little change in the swallowing. Since I failed the esophageal swallow test for Linx device, I am not a good one to use for any comparison. I still need to use water to be sure all food is in the stomach after eating, but this is not due to the device, but my other esophageal complications. After the clinical trials are further along, I plan to work with doctors in the US to "fine tune" the programing for my unique conditions. Key for me,is that with this device, this fine tuning may be possible, where it wouldn't be for any other approach.
Posted 10/8/2017 3:21 PM (GMT 0)
Hi all! I made it through 8 days without prilosec without too many issues. Had the esophageal function test and the 24 hour ph test done on Monday, October 2nd. The ph test used the sensor down the esophagus method as my GI doctor said it's more accurate than the bravo test. As of Friday my GI doctor hadn't received the test results.

I had an endoscopy on Friday morning. I was originally slated to have it done in late November, but I asked my GI doctor's office to call me if it had a cancelation. His office called on Thursday afternoon to tell me of the cancellation for a 9:30am procedure. My erosions have healed but still have some esophagitis.
Posted 10/10/2017 9:06 PM (GMT 0)
News from you, Mr Puppetman?
Posted 11/3/2017 12:53 AM (GMT 0)
Hi,
I am a new member and have been following the journey of 'puppetman' with the Endostim procedure he had done in Germany.

I am almost ready to go that route but the cost is extremely high. I also read about someone having it done in the U.K. Can you tell me how much it was there?

I have Barretts in my Esophagus and Esophagitis with no medications stopping the acid from getting into my esophagus. I have suffered from this for years and now they want me to have a surgery. They are leaning toward the LINX procedure but it scares me. The side effects after the procedure of difficulty swallowing is quite frightening to me. I cannot get into any trials for the Endostim because of my Barretts. All of my tests for swallowing were good and just had the Bravo Endoscopy.

Has anyone had the LINX procedure done? I would like to hear of your experience before deciding on going overseas to have the Endostim done.
Thank you
Posted 12/2/2017 2:37 AM (GMT 0)
Hi Puppetman, just lost my last post so am trying again. You mention you are getting treatment for your dysphagia, can you tell me what this is? My ph test has shown poor motility and Barium meal showed reflux and poor motlity, but the dr who did the Barium said my problem was caused by poor motlity because the food wasn't being pushed down and that it felt like reflux but wasn't. He then said I didn't need the Endostim op. However, his letter to Chris Sutton, the surgeon who does Endostim said I had mild oesphageal reflux and didn't mention anything about it not being normal reflux. When I spoke to Chris Sutton, he said the letter he received was quite specific that I had reflux. I feel particularly upset by all this as it has made me wonder if I would truly benefit from Endostim. I have symptoms every day, feel as though my stomach is moving, and there is movement around the sphincter area which is uncomfortable, along with a chronic cough straight after I have eaten. So if there is a way to fix dysphagia poor motility I would love to know how.
Posted 6/6/2018 4:15 PM (GMT 0)
Hi, so can Endostim be used even if there is esophageal dysmotility? Thanks in advance.
Posted 11/30/2019 12:08 AM (GMT 0)
Answer is yes, since that was my issue. It is “off label” but worked. Just needed water to wash food into stomach after eating. Unfortunately endostim is in bankruptcy and until the technology is sold, there will he no opportunity to get it. (FDA decided another solution was not needed, and those of us with motility issues we not allowed to be included in trial, even though this seemed to be the only possible solution. Have you found anything yet?
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