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EndoStim Procedure in Germany this summer

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Posted 6/30/2016 7:36 PM (GMT 0)
PuppetMan,
I do not qualify for the clinical trials for muse. I like much better than Nissen. I checked with the hospital in NYC because my hernia
Because my her is about 3cm.
I am seriously thinking about the endostim. I read they are doing it in Mexico, I wonder if any one went therefore he procedure.
Posted 6/30/2016 9:48 PM (GMT 0)
PUppetMan,
I do not qualify for clinical trails, I contacted the hospital in NYC who is doing it now. My hiatal hernia is around 3cm from last endoscopy, too big for the procedure.
I am seriously thinking to it in Germany or Engalnd. I would like to know if anyone went to UK for it. Also Mexico is doing it now, which would be the closes place to go.
Posted 6/30/2016 10:22 PM (GMT 0)
Hi Strictmother101,
The price for private pay in the UK was higher than Germany, although that may have changed now, the estimate for mine including a 3cm hernia repair, in Germany was about 10,000-13,000€, depending on device chosen and room. Be aware that, as a private pay, if there are complications found internally that need to be addressed to have a successful outcome, you are committing to have to pay for it. (In my case they found damage as the result of earlier traumatic injuries that needed repairing, witch significantly raised the price I ended up paying, but, for me, was well worth it.) You will need to check out the surgeon and hospital in Mexico. I chose Germany based on the reputation for medical care, and the experience of the doctor doing the procedure. For Dr. Fuchs, it was very routine.
Posted 7/2/2016 7:19 PM (GMT 0)
PuppetMan,

so glad to read you continue to heal, that must be a relief, and it is to me too, as I might still take the plunge and have one of the 2 Endostim's later this year, having being told by hospital doctors that I am a candidate after a number of tests (endo/gastroscopies, barium swallow, Bravo).

I found it interesting you mentioned improvement on your vocal cords, as I'm currently going through a round of tests for this myself right now. However, as I refuse to allow anyone to put tubes down my throat/nose when I am awake, I have instead had a throat/thyroid area ultrasound, and a head/neck MRI. I hope that one of these will give the doctors more idea if I do have vocal cord dysfunction (which in the past, has also been described by an array of doctors as "hypersensitive airways" [I am NOT an airline!!], chronic cough, and other things). All I do know, is that my voice keeps going, esp as I cannot take ppi's constantly.

That's on top of having GORD (gerd)/severe acid reflux, a small hiatus hernia, which to me are most probably BECAUSE of having GORD, as is the "asthma", tightness around the throat area, breathing problems, the creeky sounds in my chest which are totally embarrassing, the pain below my left breast/upper rib, nausea, and an inability to tolerate cakes and caffeine and other stuff.

Because I know the Endostim will be happening for me too, I am getting a bit nervous, but reading your updates are truly helpful.

thanks and please do keep posting
Posted 7/4/2016 4:31 PM (GMT 0)
Hi PuppetMan,

How are you getting on, I have been offered (after extensive testing) the endostim in the UK, but its about £13,000 so I was wondering if you could help with any contact details for Germany?

How are you getting on, recovering well and enjoying reduced reflux I hope?
Posted 7/5/2016 8:31 PM (GMT 0)
Hi JimmyR12
I would recommend the doctor I used, Prof. Dr. med. Fuchs. (His office assistant is Heike Vorbeck, and I received permission to post her name, from her. They welcome American patients.)
http://www.reflux-behandlung.de/behandlungszentren/ and enlarge the map and click on the location, Frankfurt am Main, to get the email contact at
AGAPLESION Markus Krankenhaus. (I don't like posting email addresses directly, but if there is a problem finding it on line, let me know.)

The hardest part of the surgery to heal from is the hernia repair. Shoulder pain greatly diminished, so I know I am healing. I attempted to drop the antacid treatment, but I am not ready yet. Still refluxing. They did tell me to wait at least 2 months to see results. (I am just a tad impatient.)
Posted 7/6/2016 3:08 PM (GMT 0)

PuppetMan said...
Strictmother101,
I had the EndoStim in Frankfurt, performed by Dr. Fuchs.@ AGAPLESION Markus Krankenhaus. Go to their web page http://www.reflux-behandlung.de/behandlungszentren/
and click on the Frankfurt location to get the email address to contact them. (pages updated since this thread started, and although I am authorized to give out the email address directly, i hate posting them on the web due to potential spam issues.) There are many new locations doing the surgery in Germany, but it is a standard procedure that Dr. Fuchs has done for a quite while and he is quite experienced at, as well as being an excellent surgeon.
The M.U.S.E. is just another version of the fundoplication, claiming similar success rates. I was not a candidate for any fundoplication due to my swallow motility issues, so this was not an option. EndoStim is a muscle stimulator designed to rebuild the sphincter muscle, rather than creating an artificial restriction as is done in fundoplication. Where EndoStim is appropriate, the success rate of eliminating the need for antacids has been about 91% vs the fundoplication rates in the 70's. M.U.S.E. claims the same success rates as other fundoplication procedures, just less invasive, similar to the T.I.F. (Transoral Incisionless Fundoplication) procedure which is done endoscopically as well.
Dr. Fuchs uses the EndoStim as a "last resort" since it involves having an IPG, implanted pulse generator that needs replacing after 7 or 10 years, depending on size used. But is quite willing to perform it on patients that have decided that they want to use this approach of treatment and qualify for it.
If I qualified for the clinical trials being started in the US for EndoStim, I would have tried going that route, but you cannot have a hiatal hernia over 2cm or have swallow motility issues, even though this may be the best surgical alternative for persons with swallow motility issues.


Hi Puppetman!

Congrats on your surgery....just wanted to check how you are doing now....after 4 months ?

This is coming in US but now yet here....but also done in India. I have a 13 year old suffering from LPR and looking for some hope, even if its in the future.

Any side effects so far ? any improvements ? Have you been able to reduce your medications.

Thanks a lot for your help!

Mita
Posted 7/6/2016 5:50 PM (GMT 0)
Hi Mita,
It has actually only been 4 weeks since the surgery, and the normal time to get results is about a minimum of 8 weeks, with the stimulation program being used. (A variable controlled by the doctor.) I have noticed a reduction in reflex extremes, and some minor improvement, and just experimented with a medication reduction, but, as expected, was not able to reduce them yet. The doctor told me to wait 2 months before experimenting, but I am always an optimist. It's hard to be patient when the results are not immediate.
There have been no side effects to date, other than the hernia healing process. I am thin enough that the device does show as a small bulge in a swimsuit, or in my cycling clothes. That is not a problem for me.
Posted 7/6/2016 6:46 PM (GMT 0)

PuppetMan said...
Hi Mita,
It has actually only been 4 weeks since the surgery, and the normal time to get results is about a minimum of 8 weeks, with the stimulation program being used. (A variable controlled by the doctor.) I have noticed a reduction in reflex extremes, and some minor improvement, and just experimented with a medication reduction, but, as expected, was not able to reduce them yet. The doctor told me to wait 2 months before experimenting, but I am always an optimist. It's hard to be patient when the results are not immediate.
There have been no side effects to date, other than the hernia healing process. I am thin enough that the device does show as a small bulge in a swimsuit, or in my cycling clothes. That is not a problem for me.

Hi Puppetman!

Thank you so much for replying back, appreciate it. Congrats on your surgery, I hope and pray all goes well with you and you recover fast to a new life.

I am facing the greatest fear of my life - my 13 year old daughter, the apple of my eye is suffering from LPR since March 2016. I am desperately looking for a upcoming cure for her, I want her to have a good life and be able to eat everything that she wants. (she likes food :))...

If you dont mind I had some further questions

(1) Is this device inside your body or outside under the skin ?
(2) Will they take it out once you are well, or this is a life long thing inside you ?
(3) Any side effects your doctor communicated you about ?
(4) Did the doctor tell you that you will be able to eat anything once you are well ?
(5) How does the doctor control the stimulation ? Is there a remote control or a wireless kind of thing ?

Also, wanted to ask if you would not mind sharing your journey with us, we can touch base through this forum or over Facebook. My name is Paromita Raghwa, from Columbus, Ohio, USA.

Hoping we can connect and be a part of your healing journey.

Best Regards, Mita
Posted 7/6/2016 8:58 PM (GMT 0)
Hi Mita,
In answer to your questions:
1. The device is in a pocket formed under the skin, outside the muscle wall.
2. The battery on the current model is either 7 or 10 year life, at which time it is replaced. I anticipate an external recharge like pacemakers are going to for my replacement, so chose the slightly smaller 7 year model. IT will be life long, although since it is new, there may be cases where ti will not be needed after muscle function is restored. No long term data to really know at this point. May spend on cute of problem.
3. No side effects, cannot tell it is working.
4. If the sphincter is restored to normal strength, I should be on an unrestricted diet. 91% of users were off meds, although I will not overdo the acid generating foods. An occasional craft beer is anticipated.
5. The unit is set by an external "wand" and can be checked in the office, and reprogrammed the same way. Once the program is set it just executes. My surgeon uses a program that stimulates once every 30 minutes. Can't feel the pulses.

While the device is noticeable due to a bulge, it will be well worth it if it works!
Posted 7/7/2016 7:37 PM (GMT 0)
Hi PuppetMan,

First - thanks for posting this. It made my day yesterday. I'm actively looking into having the same treatment as you.

Did your doctor in Frankfurt indicate how many Endostim operations he has performed?

Thanks,
T.F.
Posted 7/7/2016 8:38 PM (GMT 0)
I asked, but do not recall the number. He is the one that teaches the doctors the procedure in the hospital. For him, it was very routine. During the surgery, he identified other abdominal issues that he corrected which eliminated my chronic back pain. Apparently due pressure on nerves from abdominal adhesions form previous injuries. He know what he was doing.
Send an email to them and ask! The web address to the email link is in earlier posts.
Posted 7/18/2016 3:40 PM (GMT 0)
An update on results...
I am able to tell a big difference. I have been able to reduce the amount of antacids taken, although I have not cut them out entirely, since I am not supposed to try that until after at least 8 weeks. I am eating spicier food and not noticing reflux during the day. Gas producing food or drink is still causing shoulder pain from the hernia surgery, although that is steadily, if slowly, improving. I will update this post after the 9 week period when I attempt to make further cuts to the antacids taken.

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 :)
Posted 7/18/2016 4:19 PM (GMT 0)

PuppetMan said...
An update on results...
I am able to tell a big difference. I have been able to reduce the amount of antacids taken, although I have not cut them out entirely, since I am not supposed to try that until after at least 8 weeks. I am eating spicier food and not noticing reflux during the day. Gas producing food or drink is still causing shoulder pain from the hernia surgery, although that is steadily, if slowly, improving. I will update this post after the 9 week period when I attempt to make further cuts to the antacids taken.

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 :)

Hi Puppetman!

Thank you for the update, I appreciate it much! Thanks for sharing your healing journey with us....this gives me immense hope. Please do keep on posting these and letting us know how you are doing....

Its great to know you are able to eat and cut down on anti acids!...:))) I hope and pray your progress keeps up and you keep on doing better and better....I dont know when Endostim will launch in US, but they are trying to get a public issue I guess. In India two locations are doing it and we can go there and get it done if it works...why do you have a heart monitor ? are you having heart issues ?

My 13 years old daughter has this problem, she is doing ok, but has trouble at times...we are keeping her on clean diet without any ppis....I look to the future for some promising treatment for her complete cure...

Best Regards,
Mita
Posted 7/18/2016 6:31 PM (GMT 0)
Hi Mita,
I do not have a heart issue, but have a tendency, if not eating enough, to go hypoglycemic with exercise, which triggers very rapid heart rate. I do a lot of road cycling, and at my age, I need to be sure I don't let may heart rate get to high.
Now that I am riding again, I found no problems with intense exercise and the EndoStim.
Posted 7/19/2016 4:26 PM (GMT 0)
Hi Endostim posters from the USA,

COSTS OF ENDOSTIM SURGERY

If any of you are thinking of travelling from the US to have Endostim surgery you might like to know that there are two experienced "endostim" surgeons in the UK. As the dollar to pound exchange rate is in your favour you might get some pretty good quotes for surgery and hospital costs in the UK at present.

Both surgeons are listed on the Endostim website, one is in Southampton, and the other is in Leicester.

I had an endostim fitted last September 2015 and am probably 85% better, so far, than I was before surgery. It has not been a smooth path, but the good thing about the endostim device is that the surgeons can keep adjusting the devise to try to increase improvement. As the process is about re-stimulating micro nerves that supply the oesophageal contraction it can take some time, but does give hope that things will improve as "muscle tone" and contraction increases over the first year or so, which seems to be the case with me.

A drawback if travelling from abroad is you would need to see the surgeon every three to six months to have the devise "read" to check it is working and delivering the right "training" sessions. Any adjustments can then be made if progress on the original setting is not proving satisfactory. I am not sure if Endostim have medical practitioners in the USA who would be able to check the devise function and make the adjustments as necessary??? Would need to be trained, but it does not seem overly complicated. Might be worth emailing the medical adviser or head of clinical development at Endostim St Louis to ask if that is possible, to try to avoid the cost and upheaval of further flights to UK/Germany/India, wherever.

Good luck!
Posted 7/28/2016 9:41 PM (GMT 0)
Hi Puppetman,

Can you describe how you chose Dr. Fuchs over the other surgeons who perform Endostim in Germany?

Thanks,
T.F.
Posted 7/28/2016 11:12 PM (GMT 0)
Update on my condition:
The referred shoulder pain from the hernia surgery is virtually gone. I am belching more, which I think means the sphincter is staying closed more. I am definitely having less reflux, although still need to be on antacids. Making progress.

Hi Ted,
In answer to your question...
First I identified the Frankfurt area as a good location. If there were complications, my daughter's husband's family was from Mannheim, an hour south, and he was GP and aunt is a nurse. I also would be able to combine it with a business trip to Germany. I wanted a location that was easy to travel to for follow up visits in the future, and there are direct flights from home to Frankfurt for me.

Next I looked for doctors who are listed as performing the surgery, and Dr. Fuchs was the only one listed in the area. One a business trip, I spent an extra day and set up a pre-surgical appointment to interview him and check his qualifications and see how well he fit my requirements.

My concerns included:
1. Does he speak english? Yes, and even spent a year practicing in the US.
2. Does he routinely perform the surgery? Yes
3. Is he active in the international medical community and up on the most recent technologies? Yes
4. I wanted a doctor with a conservative approach, who considered implants as a last resort. In the interview, he demonstrated that approach.
5. Is he the head doctor at the hospital for gastro surgery and would he be the one performing the surgery? yes, I didn't want a junior doing the actual work, and as a private pay you get the top dog at this hospital for surgery and top anestheologist.
6. Are there any reports about problems or patient issues? None I could find. (There are German doctor ratings just like in america, and had a friend the search since I don't read German.)

That the hospital he is at is a teaching hospital and specializes in gastric surgeries and gets the difficult cases, was a major plus.

During the interview, he took all the time I needed to to feel comfortable, and met all my "requirements". I felt very comfortable with him, he was low keyed, took time to explain the procedure and answer all my questions and concerns. I walked away feeling this is the doctor I want doing the surgery. He uses the implants as a last resort, which agrees with my philosophy.

Your doctor should be able to help you put together your list of questions and requirements, and helped me put my list together. My doctor "followed" me through the procedure and plans to refer other patients to him.

Keep in mind, your surgical contract allows the doctor to "fix" and repair other problems that would interfere with the success of the operation. You need to be able to trust the doctor to do what is necessary, since you have already given consent. (I can't express how please I am with the additional work done and the impact it has had on my overall health, separate from the GERD.)

bottom line, I had all these questions and concerns, but in the end I trusted my gut feel about him. (pun intended.)
Posted 7/29/2016 2:47 AM (GMT 0)

PuppetMan said...
Update on my condition:
The referred shoulder pain from the hernia surgery is virtually gone. I am belching more, which I think means the sphincter is staying closed more. I am definitely having less reflux, although still need to be on antacids. Making progress.

Hi Ted,
In answer to your question...
First I identified the Frankfurt area as a good location. If there were complications, my daughter's husband's family was from Mannheim, an hour south, and he was GP and aunt is a nurse. I also would be able to combine it with a business trip to Germany. I wanted a location that was easy to travel to for follow up visits in the future, and there are direct flights from home to Frankfurt for me.

Next I looked for doctors who are listed as performing the surgery, and Dr. Fuchs was the only one listed in the area. One a business trip, I spent an extra day and set up a pre-surgical appointment to interview him and check his qualifications and see how well he fit my requirements.

My concerns included:
1. Does he speak english? Yes, and even spent a year practicing in the US.
2. Does he routinely perform the surgery? Yes
3. Is he active in the international medical community and up on the most recent technologies? Yes
4. I wanted a doctor with a conservative approach, who considered implants as a last resort. In the interview, he demonstrated that approach.
5. Is he the head doctor at the hospital for gastro surgery and would he be the one performing the surgery? yes, I didn't want a junior doing the actual work, and as a private pay you get the top dog at this hospital for surgery and top anestheologist.
6. Are there any reports about problems or patient issues? None I could find. (There are German doctor ratings just like in america, and had a friend the search since I don't read German.)

That the hospital he is at is a teaching hospital and specializes in gastric surgeries and gets the difficult cases, was a major plus.

During the interview, he took all the time I needed to to feel comfortable, and met all my "requirements". I felt very comfortable with him, he was low keyed, took time to explain the procedure and answer all my questions and concerns. I walked away feeling this is the doctor I want doing the surgery. He uses the implants as a last resort, which agrees with my philosophy.

Your doctor should be able to help you put together your list of questions and requirements, and helped me put my list together. My doctor "followed" me through the procedure and plans to refer other patients to him.

Keep in mind, your surgical contract allows the doctor to "fix" and repair other problems that would interfere with the success of the operation. You need to be able to trust the doctor to do what is necessary, since you have already given consent. (I can't express how please I am with the additional work done and the impact it has had on my overall health, separate from the GERD.)

bottom line, I had all these questions and concerns, but in the end I trusted my gut feel about him. (pun intended.)

Good to know you are making progress Puppetman....however I just found out today that EndoStim has not been done on any kid or teenager yet, so I think my daughter will have to wait (shes 13). If you have any information about this please share.

Thanks and regards, Mita
Posted 8/13/2016 10:13 PM (GMT 0)
Puppetman,

I am looking into taking part of the LessGerd trial in the US. I have done my preliminary evaluation and, honestly, my biggest reservation is the placement of the battery device under the surface of my belly. I am a thin petite woman and I am very concerned with how this will look and interfere with my ability to do core exercises etc. Would you be able to show a picture of how it looks from the outside??
Posted 8/14/2016 1:16 AM (GMT 0)

PuppetMan said...
Update on my condition:
The referred shoulder pain from the hernia surgery is virtually gone. I am belching more, which I think means the sphincter is staying closed more. I am definitely having less reflux, although still need to be on antacids. Making progress.

Hi Ted,
In answer to your question...
First I identified the Frankfurt area as a good location. If there were complications, my daughter's husband's family was from Mannheim, an hour south, and he was GP and aunt is a nurse. I also would be able to combine it with a business trip to Germany. I wanted a location that was easy to travel to for follow up visits in the future, and there are direct flights from home to Frankfurt for me.

Next I looked for doctors who are listed as performing the surgery, and Dr. Fuchs was the only one listed in the area. One a business trip, I spent an extra day and set up a pre-surgical appointment to interview him and check his qualifications and see how well he fit my requirements.

My concerns included:
1. Does he speak english? Yes, and even spent a year practicing in the US.
2. Does he routinely perform the surgery? Yes
3. Is he active in the international medical community and up on the most recent technologies? Yes
4. I wanted a doctor with a conservative approach, who considered implants as a last resort. In the interview, he demonstrated that approach.
5. Is he the head doctor at the hospital for gastro surgery and would he be the one performing the surgery? yes, I didn't want a junior doing the actual work, and as a private pay you get the top dog at this hospital for surgery and top anestheologist.
6. Are there any reports about problems or patient issues? None I could find. (There are German doctor ratings just like in america, and had a friend the search since I don't read German.)

That the hospital he is at is a teaching hospital and specializes in gastric surgeries and gets the difficult cases, was a major plus.

During the interview, he took all the time I needed to to feel comfortable, and met all my "requirements". I felt very comfortable with him, he was low keyed, took time to explain the procedure and answer all my questions and concerns. I walked away feeling this is the doctor I want doing the surgery. He uses the implants as a last resort, which agrees with my philosophy.

Your doctor should be able to help you put together your list of questions and requirements, and helped me put my list together. My doctor "followed" me through the procedure and plans to refer other patients to him.

Keep in mind, your surgical contract allows the doctor to "fix" and repair other problems that would interfere with the success of the operation. You need to be able to trust the doctor to do what is necessary, since you have already given consent. (I can't express how please I am with the additional work done and the impact it has had on my overall health, separate from the GERD.)

bottom line, I had all these questions and concerns, but in the end I trusted my gut feel about him. (pun intended.)


Hi Puppetman,

Hi there again! Was curious how your endostim is working and about your progress. Are you able to eat anything now ? So if you have some time, please do chime in and let us know.

Best Regards,
Mita
Posted 8/16/2016 8:58 PM (GMT 0)
Hi MommaB87,
I am not sure a photo would be of any value. At 6' & 175 lbs, I am not exactly petite:)
The placement in the abdominal area is variable based on your body size and shape. Mine is ~30-40deg from my side, although in the literature they show it further to the front. I think space between rib cage and hips is a determinant, and the study doctor would need to tell you the placement he would use. I am on the thinner side and there is a bulge where it is implanted, since it is outside the muscle.
With the exercising I do, which involves some core work, the device does push out and overlap the ribs at times, but has not been a problem. Initially it was a bit sore, but I have no soreness now. Because it is outside the muscle, it shouldn't interfere with exercise.
Posted 8/19/2016 7:06 AM (GMT 0)
Hi PuppetMan,

I have been looking very much into Endostim procedure, as since last year I am battling with GERD ( more specifically LPR). My endoscopy showed weak LES. I just wanted to ask, that overall since your procedure was done, are you having any issues so far?
I have read some comments with people saying that Endostim did not work for them, so I am wondering how you are doing, and whether you had any follow up tests to determine the progress.
Posted 9/15/2016 5:24 PM (GMT 0)
Any updates Puppetman, would be helpful to hear how you are doing now?!
Posted 10/25/2016 4:15 PM (GMT 0)
An update on progress at the 4 month mark.
I am still seeping on an incline and following a low acid diet, but am definitely improving! I have been able to reduce and, at least for now, stop the Dexilant, and am only on the Zantac 300mg /day. With the recent research indicating the possibility that PPIs can cause early onset of dementia, this has been a welcomed result. I use the 42" travelWedge inflatable pillow when I travel, and it really helps.
The only issue so far, is that with my travel, I am apparently causing the device to temporarily turn off, and I do get more reflux when that happens. (Not all airports have the right type of scanners, and body pat downs are not always practical, or take way too long, in many airports. Not sure what else may be impacting it.) I plan to try one of those metal thread undergarments and see if that helps.
I am still planning on my 6 month checkup, which I will probably delay until January in Germany, and will provide another update at that time.
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