Endostim implanted 2014-07-09

suzannejackson said...
Hi 3333

Really sorry you don't think this diet would help you although I have to say that only "extreme" works for me, the minute I eat anything else the flare ups start. What do the docs say about your procedure, are you the only patient who has had no relief or are there others? Your experience isn't matching up to the publicity on Endostim. I can only find two threads from other patients who have had Endostim, Rebecca from New Zealand who found it effective and Grovercat who believes it was worthwhile even though not perfect.

Maybe you just need a bit longer for the sphincter muscle to become stronger, I really hope so, feel for you as you must feel your running out of options.

Try to keep smiling

suzannejackson,

I'm in the process of getting the tests done before reporting back to my surgeon. He did say that there was too little data to say whether Endostim was effective for LPR.

So far, my latest pH impedance test showed some "improvement" number-wise comparing to the previous test, but the manometry showed that the LES pressure has dropped from low normal to zero! Confusing enough.

joao9000 said...

33333 said...


suzannejackson,

I'm in the process of getting the tests done before reporting back to my surgeon. He did say that there was too little data to say whether Endostim was effective for LPR.

So far, my latest pH impedance test showed some "improvement" number-wise comparing to the previous test, but the manometry showed that the LES pressure has dropped from low normal to zero! Confusing enough.

Hi 33333,
How's it going for you? Movement causes aerophagia and burping for me, so I have more upright reflux than horizontal reflux. I also have a bit of asthma but not to the extent as described by other LPR sufferers. My hiatal hernia was seen under endoscopy to be so small as to not qualify as such, but I've read that endoscopies can fail at seeing its largeness. So I'm really interesting in seeing how things are going for you?

I still have all the symptoms. I'd say the device is not doing anything. If it did, it wasn't something I could notice.

joao9000 said...

33333 said...


I still have all the symptoms. I'd say the device is not doing anything. If it did, it wasn't something I could notice.

thanks for getting back to me on this.

has your doctor realised it won't work with upright reflux (ie transient relaxations of the esophagus over general barrier tone is my understanding of how that works) after treating you, or is he saying your case is unusual?

have you tried zapping yourself 24/7, or is it too unsafe to hit urself with the electrodes too much?

are you thinking of doing other operations on the forum that you don't seem to have been denied to, like stretta, which has some bad reputation in the forum but good reports at sage and elsewhere for some reason that totally escapes me?

The surgeon couldn't really predict if Endostim may work at all for patients with LPR as there were too little (or no) data. I was aware that this surgery was a "test".

I had two adjustments, and I am not maxed out on the amplitude. Personally, I do not think stimulation for 24/7 is a good idea. Battery life would be a concern too.

To be frank, I think that's it. I don't think I will do anything additional.

joao9000 said...


Just to make sure, at first you reported an improvement in belching. Was it placebo, was it that your hiatal hernia repair was still working, or is belching the sole symptom to this day that did get improved by the repair and by the endostim? Because LPR is more of an UES feature and I'd imagine would be harder to cure.

I think the reduction of belching was due to the swelling during early recovery.

Everything now is pretty much the same as pre op.

33333 said...
I had my Endostim implanted on 2014-07-09 in Germany by Dr. Henning Schulz for 15000 euro, all inclusive (hospital stay, meals, etc). An implantation card was mailed to me after the surgery.

Here is my background:

- Pure LPR (no heartburn), symptoms are:

1. Frequent big long belching / regurgitation (about 9 per hour) (worsened with diaphragm use)
2. Constant white foam / mucus (worsened with diaphragm use)
3. Swallowing becomes difficult when the white foam / mucus builds up
4. Frequent throat clearing (worsened with diaphragm use)
5. Lump / swelling sensation in the throat
6. Hoarseness / weak voice
7. Voice fatigue / tightness
8. Throat burning sensation
9. Shortness of breath / difficult to breathe (worsened during / after meals, when exercising, when in the cold)
10. Frequent stomach gurgling

- Weak LES

- Normal UES

- Weakly acid / non acid reflux

- Reflux only when upright

- PPIs did not help. No use of PPIs before or after surgery

- Tried different kinds of medications, diet change, alkaline water, etc. None helped


- A hernia under 1 cm (shown as 1.4cm on test).

i am in the same situation like you. i would like very much to talk with you.

mary