EndoStim Procedure in Germany this summer

How much did you have to pay for it all?

Do you have a link to where i could perhaps get in touch with the surgeon or hospital?

Because i hear the price is around 20.000 Euro?

Post Edited (Benjawood) : 11/25/2016 4:34:56 AM (GMT-7)

My 7 month checkup on the EndoStim II implant was last week in Germany. I am thrilled to say that the Lower Esophageal Sphincter is now working properly!!! I have weaned myself off my antacids. I am still following (mostly) the low acid recommended diet and eating early, easier to digest, dinners.
Side effect is I lost all my excess weight without trying. Not a bad side effect. I still sleep on an incline, but will try horizontal in a few months.
The sphincter is still strengthening so I occasionally feel food pushed up, but nothing like before. They told me it was still strengthening, and that should improve over the next few months.
I am having no problems with the implant, and it is not affected by the metal detectors at airports or my cell phone in any way. The slight bump in my abdomen is barely noticeable, and hasn't stopped me from any of my activities. (I have chosen not to go back to ice hockey for fear of landing a puck on it.)
My issues with dysphagia are still there, and since the LES is closed, I have to wash down everything I eat with water. (At the end of a meal) If I feel anything being pushed up I need to wash it bak down with water. Hopefully over time this will also improve if the problem was used by acid reflux. If not, it is a problem that I can easily address and live with. Actually is forcing me to be healthier about drinking more water as well.
Unless there are questions asked, this will probably be my last post.

Barbruska: the polar monitor is not able to tell me if it is on, only if I get it at the right place and it is reading at the right moment when a stimulation occurs. The only real way to tell is when they download the files.

My recommended surgeon is:

Prof. Dr. med. K.-H. Fuchs
Chief Physician of the Department of General Thoracic and Visceral Surgery
AGAPLESION Frankfurter Diakonie-Kliniken gGmbH
Wilhelm-Epstein-Str. 4, 60431 Frankfurt

My 6 month check up involved an esophageal manometry test, a 24 h pH monitoring and a gastroscopy. I took the option of the night between the tests and the gastroscopy in the hospital. Total cost was ~€1.700 plus cost of any additional lab work such as a biopsy. Was less expensive to fly to Frankfurt, Germany and have the tests done, including a night in the hospital, than having them done back here.

PuppetMan said...
My 7 month checkup on the EndoStim II implant was last week in Germany. I am thrilled to say that the Lower Esophageal Sphincter is now working properly!!! I have weaned myself off my antacids. I am still following (mostly) the low acid recommended diet and eating early, easier to digest, dinners.
Side effect is I lost all my excess weight without trying. Not a bad side effect. I still sleep on an incline, but will try horizontal in a few months.
The sphincter is still strengthening so I occasionally feel food pushed up, but nothing like before. They told me it was still strengthening, and that should improve over the next few months.
I am having no problems with the implant, and it is not affected by the metal detectors at airports or my cell phone in any way. The slight bump in my abdomen is barely noticeable, and hasn't stopped me from any of my activities. (I have chosen not to go back to ice hockey for fear of landing a puck on it.)
My issues with dysphagia are still there, and since the LES is closed, I have to wash down everything I eat with water. (At the end of a meal) If I feel anything being pushed up I need to wash it bak down with water. Hopefully over time this will also improve if the problem was used by acid reflux. If not, it is a problem that I can easily address and live with. Actually is forcing me to be healthier about drinking more water as well.
Unless there are questions asked, this will probably be my last post.

Barbruska: the polar monitor is not able to tell me if it is on, only if I get it at the right place and it is reading at the right moment when a stimulation occurs. The only real way to tell is when they download the files.

My recommended surgeon is:

Prof. Dr. med. K.-H. Fuchs
Chief Physician of the Department of General Thoracic and Visceral Surgery
AGAPLESION Frankfurter Diakonie-Kliniken gGmbH
Wilhelm-Epstein-Str. 4, 60431 Frankfurt

My 6 month check up involved an esophageal manometry test, a 24 h pH monitoring and a gastroscopy. I took the option of the night between the tests and the gastroscopy in the hospital. Total cost was ~€1.700 plus cost of any additional lab work such as a biopsy. Was less expensive to fly to Frankfurt, Germany and have the tests done, including a night in the hospital, than having them done back here.

Hello Puppetman,

I really appreciate your posts, they're great! I live in the US and have just had Endostim implanted in Leicester, UK on January 31st.

Tough to say how it's going as it's obviously way to early. They also found a massive hernia that I didn't know I had and repaired it.

I am SO happy to see that the device is working for you after those 7 months, fantastic news!

Hope you don't mind answering just a couple of my questions:

1. I am all freaked out because on my way back to the US, they made me go through the Pro Vision scanners. I told them I have a pacemaker and they said they are pacemaker safe but I'm not so sure. What is your take on that? Do you go through those scanners and the device is fine?

2. Is your device 2nd generation?

3. I'm very intrigued by the idea of 'checking' that the device is sending stimulation to the LES using a heart monitor. Do you recommend a particular one for me to buy?

4. How was your manometry prior to implantation? Mine was literally 0 correct swallows with a 0% esophagus contractions as well. Did you manometry result improve after the follow-up?

5. Have you experienced pain in your sternum area post surgery? It hurts me at times and I wonder what this pain is all about. Is it maybe because that is where the electrodes are attached?

So happy you're doing so well!! Wish you all the best and just know that posts like yours are really priceless for us. You have helped so many people!

Chicago Girl

Hi Chicago Girl,
You have asked some great questions! I had similar ones and have done sufficient research to answer them. (Question 4 is critical for you to read the answer.)

1. Airport security. The metal detectors will not cause a problem. Although there are warnings, there has been no evidence that it will cause any issues with the device and turn it off (for 24 hours). I specifically went through the detectors before my check up to verify that the warnings can be safely ignored. I have had the device picked up on the body scan, even though it shouldn't be. I haven't had a problem on the standard metal detectors. (I let them know as I enter the body scanner that I have an abdominal implant that may show up, so there are no surprises.) On the following pat down screening, I have them touch it so they get used to seeing it and understanding it. (My part in educating airport security, so many of them, so few of me. I don't recommend you doing that as a women though.)
There also is absolutely no problem with store detectors or cell phones (Yes I kept mine right next to it so I could tell at my checkup.) Bottom line, there are no issues with the metal detectors at airports and no special procedures needed. Don't worry and enjoy your travels.

In the event you want to turn it off, use a 25 gauss magnet. (You can buy a donut shaped one for about $10, same as used to turn off other implants like pacemakers) In my case the only time I have successfully (although unintentionally) turned it off, was when working on my car, when I stretched over the alternator magnet. I guess this might not be an ideal solution for an auto mechanic

I have verified the above, so don't worry and go through the airport as before. Also magnets from watch bands and other items shouldn't be a problem either.

2. My device is the second generation EndoStim II (Smaller size and slightly shorter lifetime than the original.) But, I figure, by the time it needs replacing in 7 years they will have a rechargeable one available. (Like some newer pacemakers.)

3. There is no way to check its operation. None. Period. (Other than the programing wand.) The exercise monitor I use has to be in just the right position, and I have only been able to duplicate it a couple times (conditions have to be just right). It is a novelty at best. When working correctly, there should be no way to know it is working, but it is! (This was my biggest issue. I will admit, it drove me nuts for a while.) I really wanted to know it was on, and wondered if I was unintentionally turning it off. Only after I had my 6 month checkup,and reviewed the records, have I not been concerned about it working. Now I know it was/is working.

4. Sounds like your manometry was a bit worse than mine. I had 1 "almost" normal swallow out of 12. I had no improvement after 7 months. (Still "almost" o1 out of 12.) The doctor said it will take over 18 months to see any improvement, if any will occur. BUT ONLY IF I ADDRESS THE DYSPHAGIA. And at my age the odds are still not I'm my favor. They really don't know how to treat it. (Dysphagia is the medical term for our swallowing issues.)

This is the biggest issue for us to proactively address. Please read carefully!!!
Now that my LES is actually closing, I realized much of my swallowing (probably like yours) was due to gravity. Once the LES is closed, gravity doesn't work any more, and you will most likely have food remaining in your esophagus after eating. If any is pushed up from the stomach after a big meal, it will not get re-swallowed. I didn't know this and during my checkup they found "erosions" at the base of the esophagus, which was causing sensations that the GERD was still a problem. (And fueled my concern the device was not working.) It was working but the food remaining in the esophagus was causing acid issues.
The treatment recommended for this is to drink water before eating and after ALL eating. Try to avoid foods like peanut butter or other types that are sticky and may tend to not easily slide down. Drink more water, all day on a regular basis. Keep water handy. BTW, this condition should allow you to carry water with you through airport security if you alert them in advance. The EndoStim card can help there. The diet for dysphagia is, unfortunately, a low acid diet like before, eating well before sleep, and the rest of the GERD diet that you, like me, probably hoped to be off of. And, I repeat due to importance, wash all food down with water. I developed a slight annoying cough, and that is a symptom of dysphagia, and drinking water on a regular basis has greatly helped. This is an annoyance, and no where near the risk of taking massive PPIs over a long term. I have been recommended to go to my gastroenteroloogist for working out a treatment plan. (An plan to shortly.)

5. I had only slight discomfort, mostly in my shoulder, since I had a much smaller hernia that was repaired. I had the "referred pain" in my shoulder, and it tapered off over 4 months. This is common, I was told, and does go away. Be patient. I expect you had some nerve irritation as I did, and the result is "referred pains" that do taper off. I expect it is the irritated nerves in the area, and not the electrodes, based on what I learned. I highly recommend going to a doctor if you have any concerns as well. (I consulted my doctor on this.)

Thank you for asking such good questions! I hope I have been able to adequately answer your questions.
Let me know if you have any more. These were really good ones.

PuppetMan said...
Hi Chicago Girl,
You have asked some great questions! I had similar ones and have done sufficient research to answer them. (Question 4 is critical for you to read the answer.)

Hello PuppetMan,

Thanks so much for your fast and detailed response! A couple of things:

1. Have you had any trouble swallowing before the surgery? I had no idea my motility was so bad until I wanted to do LINX and did my first manometry. It was a shock. I have never ever had any issues with swallowing and I still don't. No dysphasia. So it worries me a little when you say that I may experience it now, after the surgery. Haven't had any yet and hoping that I won't get it. It's so weird though because according to my (repeated) manometry, I should have some major issues swallowing. Anyhow, seems like water is an easy fix! Does it really solve the problem for you? I have hear people with dysphasia were saying that it's a major issue where many times they can't swallow the food and need to throw up. I know one person who is only able to tolerate formula and is thinking of a feeding tube.. it may be overreacting but these kind of thoughts were running in my head when I saw my results. Never had any actual issues though, just on paper..

2. I wonder if I should even repeat the manometry at my 6 month check up (I mean it's not the nicest of tests). An information whether my motility is better or not is not really crucial, it won't change anything. Since I never had issues swallowing and my manometry is borderline, an information about improved motility won't effect in anything I was wondeirng if it was possibe that my massive hernia, together with esophagitis (now gone) was causing the motility to show so weak..who knows.

3. I was never told much about the device itself. You keep on mentioning that it turns itself off and then back on? I also have the 2nd generation but I guess I don't know much about how it works.

Thanks so much for everything! And hope you keep on getting better and that eventually you won't have any issues swallowing!

wow, 4 months for that awful referred shoulder pain to go? Nightmare...
Suffering on and off, also at the top of my ribcage on the left.
Doctor suggested getting frozen veg, in a towel, placing on shoulder for a few mins, then repeat. It worked but a nuisance when you are not near a freezer!

As for the swallowing bit, before the action of swallowing didn't always happen.
Since EndoStim/hernia fix, I can swallow, but if the foods not pureed/liquid, it gets stuck after swallowing, after the throat area. I know I'm not ready for unpureed foods yet.

PuppetMan said...
I have learned I can "verify" the the IPG is sending stimulation to the LES via my my polar heart rate monitor. When an LES stimulation is occurring, and the monitor is in the right position, it interferes with the Polar sensor and shows my heart rate at 00, at the end of the stimulation the monitor goes back to the correct rate. Since there is no sensation of the stimulation taking place, it was nice to find a way to verify it

Hey PuppetMan,

It's pretty handy that you're able to check the device works. Can you tell me more about which heart rate monitor you used to verify the device is working? And how you place it in the "right position" to check?

Ted

PuppetMan said...
If you use the frozen megs, and then when thawed, just put them in the blender and dinner is ready Great idea! I just used some ibuprofen, and that worked fine for me. I want to hear more about the swallowing over time. Mine didn't get any worse, just noticed the issue that already existed. If solids are getting stuck, be sure to keep up with the water to be sure all residue of food is washed down to prevent any problems from food remaining in the esophagus. The hernia repair may be the culprit. I think that is what was triggering my referred shoulder pain.
I'd be curious if anyone else has had swelling issues after the surgery and major hernia repair.

oh my, you really made me laugh last night!!!! Actually the veg was ready to eat the other day!!!!

As for me my regular gastro doctor told me not to take any more naproxen or any anti inflammatories because of the acid reflux, so I've steered clear of them.

Thanks so much for the water/swallowing advice, I will remember this. They deffo said its uncomfortable for me to swallow & the referred pain were both because of the hernia swelling after surgery.

Hi Puppetman

Are you still improved, it's difficult to find posts from long term endostimers. I know the trials have started in America and I'm hoping there will be a lot more info from patients after the 6 months period has completed. This is a control trial and there are large numbers involved so should give a good picture as to the benefit of the procedure.

@ PuppetMan

Before Endostim, did you expierence TLSERs (causing your LPR)?
And after al these months...are your TLSERs gone or largely decreased?

nice one puppetman,
I hope the swallowing treatment goes ok. please do update about that. thanks and take care

Hi MarkF.
All is going great! The implant was the best decision ever for me. IF given the opportunity I would have it again without second thoughts.
The question about the strengthening of the LES is a good one, of which I would have to ask the folks at EndoStim. My limited knowledge would say part of the answer is dependent on the cause of the problem, as well as the condition of the nerves and operation of them. There are many conditions that can impact it, so this is not a question I could answer here.
I think there may be a couple clinical trial spots still open, so if interested I would act quickly.
Dr. Fuchs is head of the hospital department, so the teams at his hospital would report to him from what I understand. (I could be off here, since I never directly asked the question.)