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Endostim implanted 2014-07-09

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Posted 7/15/2014 6:43 AM (GMT 0)
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

- Was declined for the LINX and fundoplication (toupet and nissen) due to poor motility. The swallowing test was “good and bad” because I was 100% peristaltic (nothing got stuck during the test). But the decision was made because my distal contractile integral was at only 89.6 mmHg per cm second (if under 500 mmHg per cm second then there is a great risk of post op dysphagia)

- A hernia under 1 cm (shown as 1.4cm on test). This was repaired with 2 stitches


My observation 1 week post op:

Belching / regurgitation, white foam / mucus, throat clearing and lump / swelling sensation in the throat have all decreased by at least 50% only 1 week post op. My own theory is that as Endostim is somewhat similar to weight lifting, so I would attribute the improvement to my hernia repair.

The most obvious improvement is belching; it can be difficult or even painful to belch now. I’ve been definitely belching less post op. This is big because many of my other symptoms are closely related to belching.

If my theory is correct, a simple hernia repair can make such a difference already this early. Kind of unreal.

Perhaps just a hernia repair can help many of us? But I think surgeons would be reluctant to do only that especially if it’s a small one. Two of my surgeons didn’t seem to concern about my hernia AT ALL.

Other voice / throat issues are TBD as I’ve been avoiding to use my voice much due to abdominal pain / weakness. I’ll see how I feel when I’m back to my normal diet too.
Posted 7/15/2014 7:47 AM (GMT 0)
That's fantastic news, and really impressive that you're feeling the benefits so quickly.

May I ask exactly what your manometry showed, as I too have very poor motility although my DCI is fine.

All the best,

Pink
Posted 7/15/2014 8:21 AM (GMT 0)
Pink,

There are too many items on the results. How about you tell me what kind of information are you looking for, then I'll post them for you?
Posted 7/15/2014 12:04 PM (GMT 0)
hi 3333'

What was your intact peristalsis? Did you have any peristaltic breaks? Any failed peristalsis and your relaxation percentage.
Any spasms?

Many thanks,

Pink
Posted 7/15/2014 8:07 PM (GMT 0)
Pink,

Regarding intact peristalsis, peristaltic breaks and spasms, if you were referring to the swallowing graph with color, I don't see anything that looks like a break or a spasm to me.

Failed peristalsis at 0%.
LES relaxation at 60%.
Posted 7/16/2014 12:02 AM (GMT 0)
Hi 333,

Sounds like you're off to a good start.

What kind of diet did they put you on for the first week?

speden
Posted 7/16/2014 1:36 AM (GMT 0)
Speden,

There was no specific diet to follow. I could eat whatever I want, but I didn't have much appetite.
Posted 7/16/2014 3:39 AM (GMT 0)
i hope your health improves.

keep us posted on your recovery.

-j
Posted 7/22/2014 12:42 PM (GMT 0)
Hi 3333,

Just wondered how you were doing with the endostim? And if you have had any improvement with your LPR?

May I also ask what your DCI was, and your Distal amplitude please?

Many thanks,

Pink
Posted 7/22/2014 5:42 PM (GMT 0)
You have the exact same symptoms as I do, pure LPR. Hope you are doing well. Don't forget to keep us posted, I'm interested in how your swallowing is doing. :)
Posted 7/23/2014 6:32 AM (GMT 0)
gtothep82,

I never had any swallowing problems (as in food gets stuck at the LES) to begin with pre op, and I don't have any swallowing problems post op. I don't have to eat any slower too.

The only "swallowing" problem I had / have is at the throat level when the mucus / white foam builds up.

I surely will keep everyone posted.
Posted 7/29/2014 5:54 PM (GMT 0)
Thanks for the update 33333. I've had the same issue with the white foam during reflux episodes. I usually chew some baking soda gum and that helps. Hope you're doing well...keep us posted! :)
Posted 8/1/2014 4:28 PM (GMT 0)
Hi,

Just wondering as to whether your symptoms have improved at all?
Posted 8/3/2014 2:18 AM (GMT 0)

GC1pink said...
Hi,

Just wondering as to whether your symptoms have improved at all?

One improvement that I'm certain about is the decrease of belching. There may be little improvement to some of the other symptoms.
Posted 8/13/2014 7:56 PM (GMT 0)
3333,

what diet are you on?

perhaps trying a paleo diet or another low carb option would help.

does drinking too much water give you symptomps?



jesse

Post Edited (sk55) : 8/13/2014 1:59:06 PM (GMT-6)

Posted 8/14/2014 7:36 AM (GMT 0)

sk55 said...
3333,

what diet are you on?

perhaps trying a paleo diet or another low carb option would help.

does drinking too much water give you symptomps?



jesse

Jesse,

I'm not on any kind of diet. I tried to change my diet pre op but it didn't help. And I feel that I should eat a normal diet post op in order to get a more realistic impression of how the device is working.

Pre op, I usually belched immediately after drinking just a couple gulps of water, which would lead to other symptoms. This can still happen post op, but it seems that it has improved....a little bit.
Posted 8/15/2014 10:39 AM (GMT 0)
3333,

did the doc tell you of any successful patients with LPR?

lpr is usually more complicated then straight gerd. I do believe diet helps, i use to belch when i drank water or ate certain foods, but diet completely cured that.

my thought is that you should assist endostim by changing you diet as well, that way you would get a better result in the end.

my doc is jamie koufman, she believes that LPR is caused by numerous factors, not just loose LES... i thinks shes right that why u get only a 50% success rate with fundoplication.

my lpr is about 90% better, from diet and meds, the last 10%... maybe i might go for endostim next year...


my analogy would be if you were plugging up a darn with 2 leaks, endostim is handling 1 leak, but the other leak is not getting handled (diet) then your still not treating the whole problem..

anyway thats my opinion...


i also had lpr symptops if i drank too much water, my solution was to drink water in small amounts and eat white sushi rice immediately after, the sushi rices seems to gel up the water in my gut, which prevents it from refluxing material back to my throat...


i just re-read your initial post you stated that belching seem to be the precursor to other symptops... that leads me to believe some of this might be nuerogenic.

thanks for keeping us posted, i know alot of members are hoping endostim cures your LPR..

Post Edited (sk55) : 8/15/2014 5:24:20 AM (GMT-6)

Posted 8/16/2014 8:35 PM (GMT 0)
Jesse,

I asked my surgeon about the effectiveness of the Endostim on LPR patients. He said there was too little data to answer the question.
Posted 8/17/2014 1:12 AM (GMT 0)
33333, I know it's only 1 month post-op, but I am curious whether your throat clearing and coughing has gotten any better or stayed the same. I'm guessing it might be too soon to tell....
Posted 8/17/2014 7:27 AM (GMT 0)

gtothep82 said...
33333, I know it's only 1 month post-op, but I am curious whether your throat clearing and coughing has gotten any better or stayed the same. I'm guessing it might be too soon to tell....

I'm having less throat clearing due to less belching overall. However, I belched more in the past week or so. This could be due to the swelling continues to go down. At times, I still clear my throat just like pre op.

No coughing whatsoever pre op and post op.
Posted 3/26/2015 4:27 PM (GMT 0)
Hi 3333

Can you tell me how you are feeling now? Yours symptoms sound very like mine and I've been told I don't have acid reflux after having 24hr PH/manomentry testing too. But I burp alot after each meal and have a constant desire to clear my throat and build up of mucus. I did the Peptest which is available to buy online and two out of three samples came out positive and my report said that I did have reflux according to this test although it was likely to be non acid or weak acid.

I feel I might be a candidate for Endostim and am desperate for some positive feed back from people like yourself before I start spending alot of money going to consultants.

Please could you post your experiences on this blog to encourage the rest of us>

Thanks

Sue
Posted 3/29/2015 7:04 AM (GMT 0)

suzannejackson said...
Hi 3333

Can you tell me how you are feeling now? Yours symptoms sound very like mine and I've been told I don't have acid reflux after having 24hr PH/manomentry testing too. But I burp alot after each meal and have a constant desire to clear my throat and build up of mucus. I did the Peptest which is available to buy online and two out of three samples came out positive and my report said that I did have reflux according to this test although it was likely to be non acid or weak acid.

I feel I might be a candidate for Endostim and am desperate for some positive feed back from people like yourself before I start spending alot of money going to consultants.

Please could you post your experiences on this blog to encourage the rest of us>

Thanks

Sue

Hi Sue,

I'm sorry to say that my experience so far is not encouraging at all. Not only I feel just like pre op, often times there is pain at the incision site.
Posted 3/30/2015 3:05 PM (GMT 0)
HI 3333

I'm really sorry that this procedure isn't working for you so far, you must feel very disappointed. It sounds as though LPR is'nt dealt with so effectively by endostim. I read that sk55 follows the Jamie Kaufman diet based on the theory that if you eat low pepsin producing foods it relieves symptoms. I would go along with this 100%.

After being diagnosed with Lymphocytic Esophagitis (and having a Peptest which showed positive for pepsin) and finding medication didn't work for me I put myself on a very strict diet of eggs, fish, poultry, meat (no fat and very small quantities of about 50grms at a meal) rice/wheat free pasta, veggies and fruit including dried, but not acidic ie no strawbs, lemon/oranges). I use olive oil for cooking and eat porridge for breakfast with soya milk and soya yoghourt. Kallo stock cubes and herbs for flavouring, corn flour or rice flour for baking and thickening. Water or herbal tea to drink and nothing else.

What I can tell you is that I followed this diet for 18 months before the flare ups stopped. I have been able to be completely free of symptoms PROVIDED I STICK TO THE DIET. Being human I tend to cheat when I go on holiday and then the whole thing starts up again with a vengeance and that is my main reason for being interested in Endostim. But to give you hope I would strongly suggest you follow the above regime, it's not too bad once you get used to it, and stick at it for at least a year, it just doesn't work if you only do it for a few weeks it has to be long term.

I'm in the process of getting myself back to normal after having been on holiday and cheated once again only to suffer the consequences for weeks on end.

I really wish you good luck, I hope my suggestion gives you hope that there is a solution.
Posted 4/1/2015 5:35 AM (GMT 0)

suzannejackson said...
HI 3333

I'm really sorry that this procedure isn't working for you so far, you must feel very disappointed. It sounds as though LPR is'nt dealt with so effectively by endostim. I read that sk55 follows the Jamie Kaufman diet based on the theory that if you eat low pepsin producing foods it relieves symptoms. I would go along with this 100%.

After being diagnosed with Lymphocytic Esophagitis (and having a Peptest which showed positive for pepsin) and finding medication didn't work for me I put myself on a very strict diet of eggs, fish, poultry, meat (no fat and very small quantities of about 50grms at a meal) rice/wheat free pasta, veggies and fruit including dried, but not acidic ie no strawbs, lemon/oranges). I use olive oil for cooking and eat porridge for breakfast with soya milk and soya yoghourt. Kallo stock cubes and herbs for flavouring, corn flour or rice flour for baking and thickening. Water or herbal tea to drink and nothing else.

What I can tell you is that I followed this diet for 18 months before the flare ups stopped. I have been able to be completely free of symptoms PROVIDED I STICK TO THE DIET. Being human I tend to cheat when I go on holiday and then the whole thing starts up again with a vengeance and that is my main reason for being interested in Endostim. But to give you hope I would strongly suggest you follow the above regime, it's not too bad once you get used to it, and stick at it for at least a year, it just doesn't work if you only do it for a few weeks it has to be long term.

I'm in the process of getting myself back to normal after having been on holiday and cheated once again only to suffer the consequences for weeks on end.

I really wish you good luck, I hope my suggestion gives you hope that there is a solution.

suzannejackson,

Thank you for your suggestions and I'm glad to hear that it works for you.

I've tried diet changes but it didn't help, though not so "extreme" like your diet. I have symptoms regardless of what I eat / drink. I belch just drinking water, literally, which would lead to other symptoms.
Posted 4/1/2015 3:25 PM (GMT 0)
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 :-)
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