ENDOSTIM a new way to restore the anti-reflux barrier.

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phil-uk
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Date Joined Jul 2012
Total Posts : 190
   Posted 2/15/2014 8:17 AM (GMT -6)   
Welcome to the new Endostim Thread.

http://www.endostim.com

News

EndoStim announces expansion of German reimbursement for EndoStim® LES Stimulation Therapy for GERD
Clinics throughout Germany receive NUB approval for 2014

THE HAGUE, Netherlands and ST. LOUIS, Feb. 13, 2014 /PRNewswire/ -- EndoStim announced today that 40 hospitals in Germany have received NUB (Neue Untersuchungsund Behandlungsmethoden) approval for its EndoStim® LES Stimulation Therapy for gastroesophageal reflux disease (GERD) or acid reflux. This represents a significant increase from 2013 and an important step towards making EndoStim available to GERD patients throughout Germany.

EndoStim's LES Stimulation therapy is a minimally-invasive, long-term treatment for severe reflux patients who are unsatisfied with medical therapy. After a simple procedure to place the EndoStim device, low energy stimulation therapy is automatically delivered each day to the lower esophageal sphincter (LES) at the junction of the stomach and esophagus. The stimulation is designed to improve the function of the patient's weak or dysfunctional LES – often the underlying cause of reflux – resulting in significant improvement in GERD symptoms of both heartburn and regurgitation, and elimination of dependence on daily medications in most patients.

Published worldwide results consistently demonstrate excellent safety and efficacy as demonstrated by long-term control of acid in the esophagus, significant reduction in both daytime and nighttime reflux and regurgitation symptoms. Most importantly this therapeutic effect is achieved with minimal side effects, a significant advancement over traditional antireflux procedures.

Professor Ernst Eypasch, M.D., Chief of Surgery at Heilig-Geist Krankenhaus in Köln-Longerich, Germany, comments, "EndoStim therapy has the potential to dramatically improve quality of life of GERD patients. Advantageously, during the device implant the anatomy of the hiatus and cardia is left almost untouched, thus the unpleasant side effects of conventional fundoplication can be avoided."

"We are truly excited to offer EndoStim therapy to a wider range of patients throughout Germany," said Shai Policker, Senior Vice President of Operations at EndoStim. "We thank the dedicated surgeons and gastroenterologists in Germany who help bring this treatment innovation to clinical practice for the benefit of reflux patients. We also thank our partner in Germany, Promedia Medizintechnik, for their continued support, and the Assessment in Medicine (AiM) team for the great work on the NUB process. We will continue to work diligently with our treating physicians to establish EndoStim as a standard of care anti-reflux procedure."

In addition to Germany, EndoStim is available in a number of countries throughout Latin America, Asia, and Europe, including the UK, Denmark and Switzerland.

http://www.prnewswire.com/news-releases/endostim-announces-expansion-of-german-reimbursement-for-endostim-les-stimulation-therapy-for-gerd-245354741.html

Post Edited (phil-uk) : 2/15/2014 6:20:14 AM (GMT-7)


phil-uk
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Date Joined Jul 2012
Total Posts : 190
   Posted 2/15/2014 8:34 AM (GMT -6)   
For the moment, we have lost the popular thread, 'Endostim New device for GERD/LPR'. I will attempt to copy the last few pages of this thread below.

We still have Gerdobservers thread, Endostim: Bite the bullet?
http://www.healingwell.com/community/default.aspx?f=45&m=2901238

phil-uk
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Date Joined Jul 2012
Total Posts : 190
   Posted 2/15/2014 8:42 AM (GMT -6)   
Page 1

justpassingthrough
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Date Joined Dec 2010
Total Posts : 591 Posted 6/9/2012 5:38 AM (GMT -7)
Hi
I thought everyone may be interested in the new Endostim device
that is being researched at the moment.
The idea is to implant a 'pacemaker' like device that sends electrical impulses to the LES
to stimulate the muscle contractions and revitalize the valve.
Its still a long way off approvals but very interesting.
I contacted them in California but there are no trials yet.
Test procedure video on a patient
http://www.youtube.com/watch?v=r_Q8-Gm6Svg&feature=related
Regards JPT LINX
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dencha
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Date Joined Feb 2009
Total Posts : 6577 Posted 6/9/2012 7:10 AM (GMT -7)
Thanks for sharing! It's very interesting and looks promising.
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stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 30980 Posted 6/9/2012 8:37 AM (GMT -7)
Thanks JPT - interesting and I know the members are always interested in what is going on re new and upcoming treatments.

Kindly,
Kitt
________________________________________
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.


"Life is not about waiting for the storms to pass...
It's about learning how to dance in the rain."~ Vivian Greene
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flux
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Date Joined May 2007
Total Posts : 27 Posted 6/14/2012 1:10 PM (GMT -7)
The clinical trials for the US are being conducted outside the US (presumably because it's cheaper):
http://clinicaltrials.gov/ct2/show/NCT01578642
http://clinicaltrials.gov/ct2/show/NCT01574339

But the international version of the website, http://www.endostim.com/home/international/, suggests it is available (or will be very soon) to the public at large in at least some countries outside the US.
Post Edited (flux) : 6/14/2012 2:14:04 PM (GMT-6)
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phil-uk
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Date Joined Jul 2012
Total Posts : 165 Posted 8/18/2012 3:32 PM (GMT -7)
Hi all, Endostim takes another step forward and gains its CE mark. Click on link for more details.

===================================================

EndoStim™ LES Stimulation Therapy for Gastro-esophageal Reflux Disease (GERD) Receives CE Mark

By EndoStim

Published: Thursday, Aug. 16, 2012 - 12:57 pm

THE HAGUE, Netherlands, Aug. 16, 2012 -- /PRNewswire/ -- EndoStim B.V. announced today CE Mark approval of its LES Stimulation System for the treatment of gastro-esophageal reflux disease (GERD).

http://www.sacbee.com/2012/08/16/4732457/endostim-les-stimulation-therapy.html

edited to add link-phil
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speden
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Date Joined Oct 2009
Total Posts : 148 Posted 8/20/2012 8:10 AM (GMT -7)
The Endostim looks very interesting. The press release says they are planning a U.S. study to begin in late 2013. So once again Europe gets access to the latest treatments before the U.S.

I'll be curious to see which of the next generation reflux surgeries has a better success rate, Torax Linx or Endostim. A couple of things that might give Endostim an edge is that the Endostim's programming can be adjusted after implantation, so it can be fine tuned. No adjustment of the Linx is possible post op so you get what you get, and then wait to see the effect of scar tissue forming around it over time.

Endostim also seems even less invasive than Linx, so one might say try Endostim first and if the LES muscle doesn't respond to the electrical stimulation, then remove it and try Linx next.
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flux
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Date Joined May 2007
Total Posts : 27 Posted 8/20/2012 9:03 AM (GMT -7)
I emailed EndoStim to get more information. Another advantage of EndoStim is that it doesn't alter the anatomy and shouldn't cause any problems with swallowing.
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Story
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Date Joined Jul 2012
Total Posts : 96 Posted 8/30/2012 1:57 AM (GMT -7)
I am also looking ito Endostim. I wonder if it is helpful with LPR and not only Gerd.
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phil-uk
Regular Member


Date Joined Jul 2012
Total Posts : 165 Posted 9/1/2012 4:50 AM (GMT -7)
Hi Story, I have copied across your link to the Endostim patent.

http://www.sumobrain.com/patents/wipo/Device-implantation-system-electrical-stimulation/WO2011109739.html

The PDF file of the same document includes charts and drawings,

http://www.sumobrain.com/patents/wipo/Device-implantation-system-electrical-stimulation/WO2011109739A1.pdf

edited to add working links.
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phil-uk
Regular Member


Date Joined Jul 2012
Total Posts : 165 Posted 9/6/2012 3:55 PM (GMT -7)
I'm thinking out loud here.

Slendertone uses Electrical Muscle Stimulation (EMS)
Endostim uses Electrical Muscle Stimulation (EMS)

How about combining them in a belt or pad worn comfortably over the LES and avoid surgery completely?
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robspect
Regular Member


Date Joined Sep 2012
Total Posts : 28 Posted 9/6/2012 4:06 PM (GMT -7)
Looks promising, but scary at the same time. what's the recovery time? do they have to put new batteries in it periodically? I'm hoping i can treat my reflux via meds, diet, etc. surgery gives me the willies.
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amo
Regular Member


Date Joined Sep 2008
Total Posts : 55 Posted 9/6/2012 6:39 PM (GMT -7)
Wow, thx for the info.! I wonder if it will be available to people that have had a nissen fundo?
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phil-uk
Regular Member


Date Joined Jul 2012
Total Posts : 165 Posted 10/21/2012 3:48 AM (GMT -7)
News.

I'm not sure how recent the results of these studies are, but thought to post some links so that anyone interested can follow up.

"LAS VEGAS, Oct. 19, 2012 /PRNewswire-USNewswire/ -- Many of the world's preeminent gastroenterologists have convened this week for the American College of Gastroenterology's (ACG) 77th Annual Scientific Meeting at The Venetian Resort, Las Vegas, NV to review the latest scientific advances in gastrointestinal research, treatment of digestive diseases and clinical practice management."

Read more here: http://www.sacbee.com/2012/10/19/4924494/innovative-technologies-and-endoscopic.html#storylink=cpy

Electrical Stimulation of the Esophagus Promising Treatment for Unresolved Reflux Symptoms Three studies unveiled today examine small numbers of patients who had a device implanted that uses low energy electrical pulses to strengthen a weak or dysfunctional lower esophageal sphincter (LES) which is the underlying cause of GERD or acid reflux. Two of the studies by investigators Michael D. Crowell, Ph.D., FACG of Mayo Clinic Scottsdale and Edy Soffer, M.D., FACG of the University of Southern California looked at various endpoints including esophageal acid exposure, improvement in GERD symptoms, and reduction of use of acid-suppressing medications known as proton pump inhibitors. The authors conclude, "Electrical stimulation of the lower esophageal sphincter is effective for treating patients with GERD over long-term year duration."

http://d2j7fjepcxuj0a.cloudfront.net/wp-content/uploads/2012/10/ACG2012_Poster13.pdf

http://d2j7fjepcxuj0a.cloudfront.net/wp-content/uploads/2012/10/ACG2012_Paper46.pdf

In a separate and unrelated study, Arjan Bredenoord, M.D. and colleagues at the University Medical Center Utrecht in Rotterdam, The Netherlands, presented a study at ACG of eleven patients with refractory GERD symptoms with devices implanted in the LES. They found that ten of the eleven patients (91 percent) were able to discontinue PPI medications. Overall, their research revealed a statistically significant improvement in patients' GERD symptoms, as well as a trend in improvement in their esophageal pH.

http://d2j7fjepcxuj0a.cloudfront.net/wp-content/uploads/2012/10/ACG2012_Poster581.pdf

edited for spelling and live links
Post Edited (phil-uk) : 10/21/2012 4:51:54 AM (GMT-6)
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GC1pink
Regular Member


Date Joined Nov 2012
Total Posts : 260 Posted 11/26/2012 9:31 AM (GMT -7)
Phil,

I like your idea of stimulating the LES spincter externally. Have you given any more thought to this? I'm also very interested in the Endo-stim, and await the outcome of all the trials.

Many thanks for all the info.
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phil-uk
Regular Member


Date Joined Jul 2012
Total Posts : 165 Posted 2/20/2013 4:31 PM (GMT -7)
Hi GC1pink, I should email Endostim, but I'm not sure I would be taken seriously.
There may be an oppertunity to talk to Endostim in the UK at some point this year, as they are planning a trial here. If I am lucky enough to get invited to one of their meetings I will ask the question then.

----------------------------------------------------------------------------------

There is some more news from Endostim, this time in Germany.


THE HAGUE, Netherlands and ST. LOUIS, Feb. 19, 2013 /PRNewswire/ -- The first patient in Germany has received treatment with EndoStim's LES Stimulation Therapy for acid reflux or gastroesophageal reflux disease (GERD). The procedure was successfully performed by Dr. Henning G. Schulz , Chief of Surgery at Evangelisches Krankenhaus Castrop-Rauxel. This also marks the first commercial use of the EndoStim system in Europe.
EndoStim therapy is a minimally-invasive treatment for GERD, designed to use low energy electrical pulses to strengthen a weak or dysfunctional lower esophageal sphincter (LES) muscle – often the underlying cause of GERD.
Dr. Schulz says, "EndoStim therapy is an excellent complement to existing surgical anti-reflux techniques. The superior characteristic of this treatment is its support and restoration of the natural anti-reflux barrier created by the lower sphincter muscle without destroying its anatomical suspension in the area of the surrounding diaphragm."
What are the advantages to GERD patients? "The less surgical dissection interferes with normal human physiology, the fewer side effects are to be expected," Schulz explains. "The existing scientific data on EndoStim therapy indicates a very high efficacy with a very low potential for side effects compared with other anti-reflux procedures."
"EndoStim is pleased to work with experts in anti-reflux surgery to bring the new treatment to patients with severe gastroesophageal reflux disease in Germany. The state-of-the-art hospitals and experience of surgeons like Dr. Schulz make Germany an important market for EndoStim," stated Bevil Hogg , CEO of EndoStim.
EndoStim is now available to patients throughout Germany under an innovative-technology reimbursement program known as the "NUB" in select hospitals. Patients interested in EndoStim should visit www.endostim.com/treatment-centers for a list of sites offering the therapy.
The EndoStim system is CE Mark approved but is not cleared by FDA for sale in the United States.

PR Newswire (http://s.tt/1zZ1Y)
http://www.prnewswire.com/news-releases/endostim-treats-first-patient-with-severe-acid-reflux-in-germany-with-endostim-les-stimulation-system-191921281.html
Post Edited (phil-uk) : 2/20/2013 4:56:58 PM (GMT-7)
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phil-uk
Regular Member


Date Joined Jul 2012
Total Posts : 165 Posted 2/20/2013 4:40 PM (GMT -7)
Some more news yesterday, as well.

THE HAGUE, Netherlands and ST. LOUIS, Feb. 19, 2013 /PRNewswire/ -- EndoStim® reports successful results in a patient with severe obesity and severe acid reflux with percent 24-hour distal esophageal acid exposure of 24% (normal defined as <4%). The patient underwent the EndoStim® procedure and began LES stimulation treatment for his GERD in December 2010, showing sustained normalization in his esophageal acid exposure after 12 months of treatment with percent 24-hour distal esophageal acid exposure at 1 year follow-up of 2.4%. He then opted to undergo a sleeve gastrectomy for his severe obesity (weight=108kg; BMI=34.9). After the sleeve gastrectomy procedure, the patient continued using EndoStim LES stimulation treatment to control his reflux. At his 2 year follow-up, he had lost 29kg (weight=79 kg, BMI=25.5) and continued to show excellent control of his acid reflux with percent 24-hour distal esophageal acid exposure at 2 year of 0%.
EndoStim therapy is a minimally-invasive treatment for GERD, designed to use low energy electrical pulses to strengthen a weak or dysfunctional lower esophageal sphincter (LES) muscle – often the underlying cause of GERD.
Preexisting GERD has been a contraindication for sleeve gastrectomy, a minimally-invasive weight loss procedure that is gaining significant popularity globally.
Dr. Leonardo Rodriguez , the treating surgeon at Clinica Indisa, stated, "This is encouraging early proof-of-concept evidence that patients with both severe obesity and GERD can be successfully treated with a combination of a sleeve gastrectomy procedure and EndoStim® LES stimulation therapy. Additionally, many patients will develop severe reflux after a sleeve procedure and cannot undergo fundoplication. EndoStim could be an excellent option for these patients."
"If these results can be replicated in a larger group of patients, this would open up sleeve gastrectomy to millions of obese GERD sufferers that have been denied the benefits of this procedure due to concerns of worsening reflux," commented Dr. Roger de la Torre , world renowned bariatric surgeon at the University of Missouri and Chair of EndoStim's surgical advisors.
Dr. Virender K Sharma, Chief Medical Officer of EndoStim, says, "Acid reflux is a significant problem in sleeve gastrectomy patients. This first case of a successful and safe sleeve gastrectomy procedure combined with EndoStim® LES stimulation therapy is an important step, though further investigation is needed to demonstrate the effect of LES Stimulation in this patient population." The EndoStim System has not been formally evaluated in patients with a history of previous esophogastric surgery.
http://www.prnewswire.com/news-releases/endostim-patient-reports-continued-relief-from-gerd-after-sleeve-gastrectomy-191921531.html
Post Edited (phil-uk) : 2/20/2013 4:44:19 PM (GMT-7)
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Gastricman
Regular Member


Date Joined Jan 2013
Total Posts : 294 Posted 2/21/2013 2:55 PM (GMT -7)
Hi there!

I too have been very interested in the EndoStim when it was in the research phase.

As a long time GERD patient and Electronic Engineer, I find this new biomedical device absolutely fascinating.

Unfortunately, their website leaves much to be desired for we USA folks, but when you click on "international," there is a bit more usable information. I know that the CE designation has been approved but the FDA has not approved it just yet for use in the USA, which is a bit of a letdown.

I intend to contact EndoStim (USA) and try to get more answers to my detailed questions, such as how the device detects a downward bolus in the distal esophagus and knows when to open the LES - I would think that there would be a sensor or sensors involved in order to accomplish this linked to their controller.

The other aspect is it's ability to be wirelessy programmed and for what functional parameters. Hopefully, the device controller cannot be easily hacked. I will post back here as soon as I can obtain additional information.

In the meantime, here is a basic video of the surgical lead implantation and controller configuration -

http://www.youtube.com/watch?v=r_Q8-Gm6Svg&feature=related

Cheers!

Gastricman
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phil-uk
Regular Member


Date Joined Jul 2012
Total Posts : 165 Posted 2/24/2013 5:23 AM (GMT -7)
Thanks Gastricman.

Is there anyone here who is fluent in Spanish/English and willing to translate?
There is a youtube video/interview from one of Endostims South American patients. She looks happy enough, but it would be good to know what she has to say.

EndoStim paciente - Rosalita
http://www.youtube.com/watch?v=Fjw9ZpZ8aS4
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Gastricman
Regular Member


Date Joined Jan 2013
Total Posts : 294 Posted 3/7/2013 12:05 PM (GMT -7)
Hi all,

Does anyone know (reasonable certainty) when the EndoStim will enter clinical trials in the USA and UK?

Thanks,

GM
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Baza
Regular Member


Date Joined Jan 2011
Total Posts : 378 Posted 3/7/2013 12:54 PM (GMT -7)
Hi Gastricman,i think trials are being carried out now by Proffessor Stephen Attwood in the UK. He is part of the Nugits team of surgeons based in Newcastle.Barry
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Gastricman
Regular Member


Date Joined Jan 2013
Total Posts : 294 Posted 3/8/2013 10:04 AM (GMT -7)
Hi all,

Here is a preliminary study of the EndoStim system from Surgical Endoscopy, October 2012.

"Electrical stimulation therapy of the lower esophageal sphincter is successful in treating GERD:
final results of open-label prospective trial"

http://link.springer.com/article/10.1007/s00464-012-2561-4/fulltext.html

The article is "open access" which means that you can review/print the entire study for free.

Enjoy.

GM
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phil-uk
Regular Member


Date Joined Jul 2012
Total Posts : 165 Posted 4/16/2013 2:26 PM (GMT -7)
Endostim now in India, as well as EU.

http://www.bizjournals.com/stlouis/blog/BizNext/2013/04/endostim-expands-into-india.html

Medical device maker EndoStim has signed an agreement with Invive Healthcare, a Mumbai, India-based company, to distribute its product in that country.

EndoStim’s Lower Esophageal Sphincter (LES) Stimulation System treats gastro-esophageal reflux disease (GERD), commonly known as acid reflux, through electrical stimulation.

The EndoStim system is not cleared for use in the United States by the Food and Drug Administration, but has CE mark approval in the European Union, which allows EndoStim to offer the treatment in the 30 countries that belong to the European Economic Area.

The first commercial use of LES was in February on a patient in Germany.

The agreement with Invive is the first one announced in a country outside the EU.

“Focusing mainly on gastroenterology, Invive Healthcare has a strong presence across India which will help us understand and develop the Indian market,” said Michael Lightfoot, director of operations and business development at EndoStim, in a statement.

EndoStim is based in St. Louis in the Center for Emerging Technologies in Midtown and has its European offices in The Hague, Netherlands

=====================================================================

An interesting case study of EST being used to replace a failed fundoplication...
http://www.sages.org/meetings/annual-meeting/abstracts-archive/electrical-stimulation-therapy-est-of-the-lower-esophageal-sphincter-les-emerging-treatment-for-preventing-gerd-in-achalasia-patients-treated-with-les-mytomy/
Post Edited (phil-uk) : 4/16/2013 3:42:26 PM (GMT-6)
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khartman
New Member


Date Joined Jun 2013
Total Posts : 17 Posted 6/8/2013 3:46 AM (GMT -7)
Have anyone heard anything new about Endostim? They performed the first commercial surgery in Germany earlier this year.

I could not found any new news in english at the internet.

Here is a video about Endostim, could anyone who speaks germany translateit in brief?

http://www.youtube.com/watch?v=nkvoiynuLfc
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mattinthehat2502
Regular Member


Date Joined Mar 2013
Total Posts : 47 Posted 6/8/2013 11:14 AM (GMT -7)
phil-uk said...
Thanks Gastricman.

Is there anyone here who is fluent in Spanish/English and willing to translate?
There is a youtube video/interview from one of Endostims South American patients. She looks happy enough, but it would be good to know what she has to say.

EndoStim paciente - Rosalita
http://www.youtube.com/watch?v=Fjw9ZpZ8aS4


She basically said that she had reflux that was affecting her throat. It made her life miserable. She found out about the endostim while on the beach one day reading a newspaper. She contacted the company via email and was selected to receive the endostim. She said it has totally changed her life, she feels like she has been re-born. She said that she doesn't even notice that the device is there.
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khartman
New Member


Date Joined Jun 2013
Total Posts : 17 Posted 6/8/2013 2:12 PM (GMT -7)
Well, Rosalitas story sounds really good. Very little experiences though is reachable online about Endostim implants. Aren't they doing commercial Endostim-surgerys in Germany and India. You would think that there should be some experiences out there how it works?

Basically, what do you others think about Endostim as far it comes with the information that is out now?

Did the moderator by the way contact Endostim for a contactperson here to healingwell.com, I remember reading about it in aan other thread.

Post Edited (phil-uk) : 2/15/2014 7:15:20 AM (GMT-7)


phil-uk
Regular Member


Date Joined Jul 2012
Total Posts : 190
   Posted 2/15/2014 8:45 AM (GMT -6)   
Page 2 is missing

phil-uk
Regular Member


Date Joined Jul 2012
Total Posts : 190
   Posted 2/15/2014 8:48 AM (GMT -6)   
Page 3

Scuba Dan
New Member


Date Joined Nov 2013
Total Posts : 6 Posted 12/7/2013 8:38 PM (GMT -7)
phil-uk said...
hi khartman. Fort have closed their discussion area for the moment due to constant spamming.
The Info contained in the threads is lost for the moment.

I have a copy of the Endostim thread. In the interests of GERD patients everywhere, I could paste it here, if the moderators were agreeable?

Phil


I think that would be a good idea Phil.

Has anyone heard anything about the endostim device being TGA approved in Australia any time soon?
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RebeccaG New Member


Date Joined Dec 2013
Total Posts : 19 Posted 12/21/2013 3:31 AM (GMT -7)
Hi all

My name is Rebecca and I am part of the New Zealand Endostim trial - I had the device implanted 6 months ago. I had suffered from GORD (or GERD as its called in the US) for over 4 years and had quite severe symptoms. My diet and lifestyle were affected and I also suffered from spams that would make my heart race and I got very ill.

I am very pleased to say that the device is working extremely well and has changed my life. I no longer have to take PPI's and there are foods I can now eat that I couldn't go near before the surgery, such as garlic, spicy foods etc.

I have just had my 6 month check up tests and everything is going really well - no side effects at all and my LES pressure is now in the normal range.

The surgery is quite minor as they use laparoscopy which greatly reduces recovery time - so long as you take a full two weeks and don't do any lifting or physical activity (other than normal day-to-day activity) then recovery is quick and not too painful. The first few days are a bit sore, especially due to the gas they pump into the stomach for the surgery as this causes some shoulder pain for a couple of days.

In summary, it has been very worthwhile with no anatomical changes and no restrictions on my normal activity - I almost forget I have the implant. I can't feel the stimulation at all and there is no pain or discomfort caused by the device or leads at all.

The battery is supposed to last between 12 - 15 years, by which time the device probably won't need to be on anyway. The stimulations "re-train" the LES so it can function normally on its own. In fact, my stimulations have already been reduced to every 3 hours and it still works fine as the LES is getting stronger.

As far as I know from existing trial participants there have been no issues with the leads or device moving or coming loose and here hasn't been any need for any further surgery. The device can be personally tailored and adjusted remotely with a small wand that they place over my side that is controlled by a laptop - very quick and totally non-invasive.

I would strongly recommend the Endostim device to anyone with GORD - it is not a cure but is by far the best treatment option available.

If anyone is considering Endostim I am more than happy to answer any questions you have.

Best wishes to everyone who suffers from this - I know how difficult it can be.
Regards
Rebecca
Post Edited (RebeccaG) : 12/21/2013 11:29:04 AM (GMT-7)
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Mcedge
Regular Member


Date Joined Aug 2013
Total Posts : 292 Posted 12/21/2013 4:20 AM (GMT -7)
Rebecca

I am so pleased for you. This device seems to be fantastic.

Just a couple of questions :-

Is this only for people with a weak sphincter ?

Can it be used if you have a hernia ?

Can it be used if you've had any other procedures such as a fundoplication ?

Thanks and good luck with your recovery.

Maria
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phil-uk
Regular Member


Date Joined Jul 2012
Total Posts : 165 Posted 12/21/2013 6:42 AM (GMT -7)
Hi Rebecca. Thanks for joining and posting about your continuing progress.

Could you edit your post and remove your email? This could be picked up by spammers. You can put your email in your profile if you want people to contact you direct. Only other members can view your profile.

Cheers

Phil
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RebeccaG
New Member


Date Joined Dec 2013
Total Posts : 19 Posted 12/21/2013 11:37 AM (GMT -7)
Hi Phil - sorry about that - email now removed.

Hi Maria - I don't think it is restricted to a weak sphincter as mine used to spasm and would be too tight at times - I think it more works to regulate the sphincter, as they can reverse the polarity to relax the sphincter. I'm not 100% sure how it works though.
We had gastroscopy tests to check that we didn't have a hernia any larger than 3cm as part of the pre-trial tests. If they were to find one they were going to fix it before proceeding.
I don't know if you can have it installed if you've had a fundoplication - may have to ask the specialist or Endostim directly.

Cheers
Rebecca
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33333
Regular Member


Date Joined Jun 2012
Total Posts : 67 Posted 12/22/2013 9:04 PM (GMT -7)
Rebecca,

Thank you for sharing your experience.

Do you know if poor esophageal motility is a concern for the endostim procedure?

Thanks
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RebeccaG
New Member


Date Joined Dec 2013
Total Posts : 19 Posted 12/22/2013 11:08 PM (GMT -7)
Hi - I believe the Ednostim device is designed to treat certain types of poor motility, however it would depend on the nature of the problem e.g. if this is a secondary disorder and there are other issues causing the symptoms.
As part of the trial we had to undergo a manometry test but I'm not sure what level of motility dysfunction would have ruled someone out from participating.
Rebecca
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GC1pink
Regular Member


Date Joined Nov 2012
Total Posts : 260 Posted 12/25/2013 5:43 AM (GMT -7)
Hi Rebecca,
It's so good to hear that you are greatly improved!!
Can you tell me what the pressure of your LES was when you started the endostim?
And can you exercise with it?
Have your esophageal spasms stopped now?

Best regards
________________________________________
LPR, Hypothyroidism, Glaucoma, Dry Eye Syndrome, Positional Vertigo

"I am simply stunned...that is this age of technology not one company or individual has managed to make a valve that could be placed BELOW the LES to STOP reflux!"
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RebeccaG
New Member


Date Joined Dec 2013
Total Posts : 19 Posted 12/30/2013 7:20 PM (GMT -7)
Hi GC1pink

I don't actually know the exact LES pressure I started with, as the test results went directly to the trial clinical team, however the specialist did mention to me at my 6 month check up that it has improved significantly and was now in the "normal" range. The trial parameters required a certain level of dysfunction to be able to participate but I can't remember what those parameters were.

I can exercise and do any of the normal physical activities I used to do without any discomfort or impedance from the device. The only thing the surgeon advised was to avoid physical contact sports such as rugby or boxing (which wasn't an issue for me anyway) as a severe knock to the implant site could potentially cause damage.

My oesophageal spasms have drastically reduced but haven't completely stopped - if I drink too much coffee during the day or eat a large meal I still get the occasional spasm and/or chest pain. The device isn't a cure as such so I still have to be mindful of what and how much I eat - but nowhere near to the degree that I previously had to control my diet.

The one issue I have found is if I am sitting in the same position for too long - particularly with long distance driving, I do get chest pain and it feels like the LES is tightening too much. If I can get up and walk around for a bit it tends to go away. This is a symptom I had prior to the implant which hasn't really improved.

Hope this helps - have a great New Year!
Rebecca
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pars.ley
New Member


Date Joined Dec 2013
Total Posts : 4 Posted 1/1/2014 9:48 AM (GMT -7)
@RebeccaG
First of all, let me say thank you for sharing your experience with us. I am very grateful. I searched all over the web to read a real person’s experience. You are the first posting about your experience with Endostim in a forum I read. Unfortunately that's why I have some additional questions.
In another thread you mentioned you took Pantoprazole before the surgery. May I ask you how much Pantoprazole did you take per day?
May I ask you if you slept flat or elevated before the surgery? If you slept elevated, can you sleep flat, now?
In case you had to belch more often since having GERD: is it reduced now?
In case you had a white tongue before endostim: is there any change now?
Did you have an endoscopy while being on PPI? Was your esophagus inflamed (esophagitis) while on Pantoprazole?
(I hope these questions about your specific condition pre-surgery are not too intimate, feel free to answer via mail if you prefer or not answer at all, no problem.)
Do you know if they want to try to further reduce the stimulation time?
How long does the trial last?


Sorry for asking so many questions. It is no problem if you may not be able to answer all of them.
I’m just trying to gather any piece of information I possibly could.
The important thing is that it improved your situation. I wish you all the best!

Thank you very much for posting here!

News about trial in the UK
Fortcharity gave an update on December 20: www.fortcharity.org.uk/wordpress/?p=143
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RebeccaG
New Member


Date Joined Dec 2013
Total Posts : 19 Posted 1/1/2014 3:02 PM (GMT -7)
Hi

I have no problem at all answering any questions people have as I believe it's important to be able to make fully informed choices - especially relating to your health. New Zealand is the first English speaking country to run the trial for Endostim which might be why I'm the only one to post my experience with the device - we only have 6 people who meet the criteria for the trial so far and I was the third person to get the implant.

1. When I was first diagnosed with GORD I was given 80mg of Pantoprazole per day which was reduced to 40mg for about 1 year before I started the trial. At times I did take another 40mg in the evening when my symptoms got worse - maybe every couple of weeks. I also took Diltiazem (a calcium channel blocker) when I had spasms and my heart rate went up.

2. Before the implant I had to sleep on my back with my head slightly elevated, occasionally I could lie on my side. Now I can sleep how ever I want, including on my front which was impossible before.

3. I didn't really have excessive belching before and but I do tend to burp a bit more now - probably due to not being on PPI's, but no more than a normal person. One side effect of the laparoscopic surgery was increased gas for about a week but it subsided.

4. No I didn't have a white tongue and no changes there.

5. Yes I had an endoscopy while on PPI's but my oesophagus wasn't inflamed as far as I know.

6. The trial runs for two years - I have just gone past the 6 month mark. I spent the first 3 months on two hourly stimulations (which go for 30 minutes) which they reduced to three hourly for the past 3 months. At the last check up a couple of weeks ago they decided to leave the stimulations as they are as I am responding well. I have another check up in March where they will assess my progress before making any changes.

Having read other people's experiences on this forum I am extremely grateful to have this device and I strongly urge anyone who is considering other surgeries to contact Endostim - the NZ trial results are being analysed through their US office. Otherwise push your medical professionals to investigate this option - I have found that many doctors have no idea this exists and need educating. I also believe that it is being offered privately in Germany already and maybe available in NZ within the next 18 months to 2 years.

Best wishes
Rebecca
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GC1pink
Regular Member


Date Joined Nov 2012
Total Posts : 260 Posted 1/2/2014 11:07 AM (GMT -7)
Rebecca,
Could you explain what happened during your hospital stay for the Endostim please.
And did you come off your ppi's immediately or did you taper down?

many thanks
________________________________________
LPR, Hypothyroidism, Glaucoma, Dry Eye Syndrome, Positional Vertigo

"I am simply stunned...that is this age of technology not one company or individual has managed to make a valve that could be placed BELOW the LES to STOP reflux!"
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RebeccaG
New Member


Date Joined Dec 2013
Total Posts : 19 Posted 1/3/2014 4:05 PM (GMT -7)
Hi GC1pink

I was in hospital for about 24 hours - the surgery only took around 1 hour. I was given a general anaesthetic and the surgery was laparoscopic so only a few small incisions around my belly for the instruments and camera and one longer incision for the device (about 3 inches long) just under my left rib cage. They insert the device into a pocket of abdominal fat (where it sits tight and doesn't move) and make a very small incision in the abdominal muscle and feed through the leads and attach them to the lower oesophageal sphincter. There was no damage at all to the oesophagus or surrounding tissue, just a little bit of swelling that only lasted a couple of days.

I felt a bit sore and groggy after the surgery as is normal and they kept me in over night for observation. In the morning the Endostim team activated the device. I was on an ECG monitor to ensure there was no unusual cardiac activity - which there wasn't. After the device was activated they monitored my vital signs for 2 hours and as there were no problems I was sent home. I had to wear an elastic brace around my middle for about 4 weeks just to help the incision wounds heal.

The laparoscopic surgery involves pumping gas into the stomach which took a few days to subside so I did have shoulder tip pain and excess burping for a few days. I was able to move around quite well after 5 days but we moved house 10 days after the surgery and I stupidly lifted boxes and ended up in hospital again with severe pain due to tearing the small incision they make in the stomach muscle where the leads from the device go through. After another week of rest I was pretty much all healed. I was quite amazed how well the wounds have healed and I was able to eat normally etc almost straight away. I was lucky to have an extremely talented and experienced surgeon - Mr Booth - he worked hard to get the Endostim trial underway here in NZ.

I stopped taking the PPI's the day before the surgery and haven't had to take any since - which is amazing as before the implant if I didn't take them I would have been in agony. It's great to not have to be on any medication now.

Hope this answers your question
Rebecca
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phil-uk
Regular Member


Date Joined Jul 2012
Total Posts : 165 Posted 1/4/2014 7:18 AM (GMT -7)
Hi Rebecca, Happy New Year.

Thanks for giving such detailed and useful replies. Endostim sounds like a perfect solution for those who meet the selection criteria for the device.

There looks likely to be more information forthcoming about the UK trial in the next few months, as FORT are sorting out their staffing problem. They better get on with it soon, otherwise Endostim may just concentrate on the planned US trial!

Cheers

Phil
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GC1pink
Regular Member


Date Joined Nov 2012
Total Posts : 260 Posted 1/4/2014 10:44 AM (GMT -7)
Hi Rebecca,

many thanks for the very detailed explanation, and super news about coming off the ppi's so quickly!

May I ask if you had to have a modified diet for a while, and did you have any difficulties swallowing?

It's so good to hear positive reports about the Endostim, I'm convinced it's the way forward for this rather odious disease.

have a great 2014!!
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RebeccaG
New Member


Date Joined Dec 2013
Total Posts : 19 Posted 1/4/2014 2:42 PM (GMT -7)
Hi - no I didn't have to have a modified diet after the surgery, I only had the usual post general anaesthetic lack of appetite for a couple of days. In fact I was able to start eating foods I had previously avoided. Also no difficulty swallowing - the device doesn't impact on swallowing or the ability to ingest foods. Mind you, I didn't have any problems with swallowing before the surgery either.

Fingers crossed the UK trial goes ahead soon - it really seems to be a far better option than some of the other surgical treatments out there.
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GC1pink
Regular Member


Date Joined Nov 2012
Total Posts : 260 Posted 1/5/2014 8:33 AM (GMT -7)
Hi Rebecca,

You've been most helpful. May I ask about your LES spasming, I seem to get this a lot too, it seems to tighten on it's own, it grips for a while and then relaxes.

So do you still get the spasming with the Endostim? And have they advised you if this will get any better?

Many thanks.
________________________________________
LPR, Hypothyroidism, Glaucoma, Dry Eye Syndrome, Positional Vertigo

"I am simply stunned...that is this age of technology not one company or individual has managed to make a valve that could be placed BELOW the LES to STOP reflux!"
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Noelle3
Regular Member


Date Joined Sep 2013
Total Posts : 140 Posted 1/5/2014 12:53 PM (GMT -7)
Sounds very promising!

I got in touch with Endostim a couple of months ago in order to find out how I could put myself forward for consideration for the UK trial. They were very helpful and said they would pass my details on to the surgeon involved in the trial. After a bit of back and forth emailing with Endostim I was finally asked the name of the physician who would be referring me for the trial .. to which I replied that no physician was referring me, I was simply self referring. I heard nothing after that.
I have no real idea how these trials work and what you have to do to get on one.
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RebeccaG
New Member


Date Joined Dec 2013
Total Posts : 19 Posted 1/6/2014 11:48 AM (GMT -7)
Hi GC1pink - I still get the spams but nowhere as much as before. I've found it's mainly postural when I've been sitting for while like long distance driving or when I've had too much coffee or a large meal. Also, the spasms aren't as bad as they were and I only get tightness and slight chest pain, where before it would be quite extreme and would send my heart rate through the roof. The trial team haven't said anything about what they expect from the results at all - I suppose they don't want to interfere or set up any expectations.

Noelle - our trial was advertised in our local newspaper and I didn't need a referral, I just had to meet all the criteria by way of tests etc. However it is being run by our district health board through a public hospital - I'm not sure how the UK one is being run.

Rebecca
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Gondore
Regular Member


Date Joined Jan 2014
Total Posts : 51 Posted 1/10/2014 7:45 AM (GMT -7)
@RebeccaG

RebeccaG,

Did your experience any kind of LPR symptoms before having your surgery? Thank you so much for sharing your experience.
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GC1pink
Regular Member


Date Joined Nov 2012
Total Posts : 260 Posted 1/10/2014 8:03 AM (GMT -7)
Hi Rebecca, how are you doing?

Can you advise me if you feel any tightening of the LES when the electrical stimulations are happening?

And how quickly did your acid reflux symptoms stop after you had the procedure done?

All the best!
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RebeccaG
New Member


Date Joined Dec 2013
Total Posts : 19 Posted 1/10/2014 12:40 PM (GMT -7)
Hi - I only very occasionally had minor LPR symptoms like hoarseness and throat clearing. My symptoms were mainly GORD related.

I can't feel the LES tightening during the stimulation - I've tried concentrating really hard and still can't feel anything.

My symptoms started getting better within a week - hard to tell to what extent because I didn't have much of an appetite during the first few days of the recovery process. The symptoms got less and less over the first month and I didn't have to take any PPI's at all from the day of the implant onwards.

As I've previously mentioned I do still get symptoms every now and again which I have figured out are from overeating or too much coffee or positional from sitting forward or long distance driving. The symptoms are nowhere near as extreme as they were and are manageable.

Any news on the UK trial?

Rebecca
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GroverCat
Regular Member


Date Joined Mar 2013
Total Posts : 120 Posted 1/10/2014 4:19 PM (GMT -7)
Anyone know if there's going to be a trial in the US?
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veritas44
New Member


Date Joined Jan 2014
Total Posts : 12 Posted 1/10/2014 4:56 PM (GMT -7)
Hi Rebecca,
Thanks for sharing such helpful information.

I have concerns in regard of the device though. Can you feel it at all? Like when lying down on your belly? Does it give you discomfort in any situation?
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RebeccaG
New Member


Date Joined Dec 2013
Total Posts : 19 Posted 1/10/2014 11:23 PM (GMT -7)
I can only feel the device if I press down on the spot where it's implanted. It doesn't give me any discomfort at all, even when I'm lying on my front and I'm not a very big person either. I forget it's there most of the time.
It can't move and poses no risk to your health - I carry a card in my wallet in case I'm in an accident, purely so the paramedics know what it is. It does have to be switched off if you have an MRI though.
I had an x-ray and it looked really strange - the radiographer said she thought I had half a cell phone in my belly![

phil-uk
Regular Member


Date Joined Jul 2012
Total Posts : 190
   Posted 2/15/2014 8:49 AM (GMT -6)   
Page 4

recentgerder
New Member


Date Joined Nov 2013
Total Posts : 12 Posted 1/11/2014 1:09 PM (GMT -7)
Hi RebeccaG,
I really appreciate your patience to reply to all the questions.

Thanks again for all the contribution and all the best with your recovery.
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GC1pink
Regular Member


Date Joined Nov 2012
Total Posts : 260 Posted 1/15/2014 1:58 AM (GMT -7)
Hi Rebecca,

Just a quick question please. How often did your LES tighten during the day? And was this mainly caused by reflux?

Thank you.
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RebeccaG
Regular Member


Date Joined Dec 2013
Total Posts : 20 Posted 1/15/2014 2:15 AM (GMT -7)
Hi GC1pink - my LES would spasm and tighten almost all day before I was put on PPI's, which then reduced to 3 - 4 times a day, mainly in the afternoon/evening and after meals, also depending on how much coffee I had during the day and the size of my meals etc.

I can only guess it was the reflux causing it as this has dramatically reduced since the implant, along with the reflux symptoms. None of the tests I had gave me any definitive answers about the spasms.
Rebecca
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GroverCat
Regular Member


Date Joined Mar 2013
Total Posts : 126 Posted 1/17/2014 9:20 AM (GMT -7)
Hi Rebecca, thank you so much for staying active on this forum! May I ask how often you needed to go in to have your device adjusted? I am not sure at what point this technique might become available in the US, and I was wondering if it's even feasible to think about a trip to Europe where it's commercially available. I know you've had lots of doctor visits because of the trial, but is this always the case?

Thank you,

GC
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7Stringer
Regular Member


Date Joined Aug 2013
Total Posts : 32 Posted 1/17/2014 5:01 PM (GMT -7)
Hi all. Can anyone tell me if this helps with chest pain and if this would also prevent hiatal hernia surgery and if it would be safer than that.
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RebeccaG
Regular Member


Date Joined Dec 2013
Total Posts : 20 Posted 1/18/2014 1:20 PM (GMT -7)
Hi GC

I have only had the device adjusted once - from 2 hourly stimulations down to every 3 hours and that was 3 months after the surgery. I think this was done as part of the trial to see how different timings impact on the performance of the device. Other than that all they do is download the readings to ensure it has been doing it's job, which takes 2 minutes to do. I don't think this would be done as often if it wasn't a trial.

7Stringer - It would depend on what was causing the chest pain or hiatal hernia - the device helps stop acid going up the oesophagus so if that is what's causing the pain then it will probably help.

Rebecca
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GroverCat
Regular Member


Date Joined Mar 2013
Total Posts : 126 Posted 1/20/2014 12:47 PM (GMT -7)
Thanks, Rebecca. I just sent some exploratory emails to the surgeons in Germany who have made the procedure commercially available. My major concern is pregnancy... I might want to get pregnant in the next five years, but I'm not sure if this device would make pregnancy risky. Have you heard anything to this regard?

GC
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RebeccaG
Regular Member


Date Joined Dec 2013
Total Posts : 20 Posted 1/21/2014 1:23 AM (GMT -7)
Hi GC - one of the rules of our trial was no pregnancy and I have to do pregnancy tests every 3 months, but I believe this only due to the trial rules set down by the Ethics Committee, not because it poses any risk.
I hope the surgeons in Germany can give you the answers you need and help you out.

Best wishes
Rebecca
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GroverCat
Regular Member


Date Joined Mar 2013
Total Posts : 126 Posted 1/21/2014 1:36 PM (GMT -7)
Thank you, Rebecca. I will see what they have to say!
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7Stringer
Regular Member


Date Joined Aug 2013
Total Posts : 32 Posted 1/21/2014 10:44 PM (GMT -7)
Hi Rebecca, it's just air and or reflux causing the chestpain. A general reflux upwards causing these awful sudden contractions. But they don't last. They are a split second long but so awful. Is this because my les is weak?

And I cant even go to the ground gym anymore. Top much air squeezing upwards to belch. Dangerous stuff because I can feel the taxing effort of the heart having to kick in to keep up.

And confusion is amounting to a hopeless feeling. Because for 10 years when the symptoms were not quite so bad, I thought for the longest time that I have a hiatal hernia but now the results say I don't even have one which makes this even more confusing.

Should I have an endoscope done? Is it a more accurate test and is it safe? Or should I go right to this implanted device.
Post Edited (7Stringer) : 1/21/2014 10:54:17 PM (GMT-7)
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GroverCat
Regular Member


Date Joined Mar 2013
Total Posts : 126 Posted 1/22/2014 5:32 PM (GMT -7)
Hi Rebecca. I got a (positive) response to my inquiry even faster than I thought I might. I'm very much considering the Endostim at this point, and I was wondering whether you have spoken to other people who have had the procedure done as well. Do you think it will work as well as the studies are showing? The doctor I spoke with said in three or four of his patients, he has chosen a site of implantation higher than normal (up in the archway of the ribs rather than the lower/middle abdomen) to make it unlikely that swelling from any future pregnancies could cause a problem, and that so far those implantations are working just like the others. (Although he said during pregnancy they would want to turn the device off...). My concern would be, if they turn off the device during a pregnancy (probably not for another 2-3 years in my case), could my LES lose the ability to function well-ish on its own without stimulation? In that case, being preggers could be pretty miserable...

Do you have any idea how to get ahold of other Endostim folks or have you talked with your doctor about the experiences of other patients? It would be grand to hear from more voices!
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RebeccaG
Regular Member


Date Joined Dec 2013
Total Posts : 20 Posted 1/23/2014 11:50 AM (GMT -7)
Hi 7Stringer - before getting the device you do need to have all the necessary tests such as endoscopy first to ensure that the device is the best option for you.

GroverCat - good to hear they got back to you with such positive news. Unfortunately I don't know any of the other trial participants but the feedback from our clinical trial team is that so far is the device has been a great success and has helped everyone. obviously we didn't have anyone who was pregnant as that was a condition of the trial.
The device helps re-train the LES and in the other trials I think they have actually switched it off after about 18 months and the LES functioned normally.
My nurse will be ringing me soon for our monthly chat so I will ask her if there is anyway you might be able to get in touch with the others or with the clinical team.
Rebecca
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GroverCat
Regular Member


Date Joined Mar 2013
Total Posts : 126 Posted 1/23/2014 4:19 PM (GMT -7)
Thanks, Rebecca. What I've heard is that the standard procedure for commercially arranged procedures in Germany is a four week post-op re-adjustment and read of the device followed up with a six month checkup including a full workup: manometry, barium swallow, EGD, etc... After that, their policy is a yearly survey or, of course, to contact them if any problems arise. The expected roll out for a US approved, commercially available service is not for another 3-4 years, according to one of the leaders of Endostim (ie 2017/2018). That would be a lot of trips for Germany for me in the meantime... hmm... If I can figure out the finances, I can think of worse places to visit as a medical tourist.
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Gondore
Regular Member


Date Joined Jan 2014
Total Posts : 57 Posted 1/24/2014 6:55 AM (GMT -7)
Rebecca:

Have you heard anything on how successful this device has been for people with more atypical symptoms such as throat tightness/pain, throat clearing, acid taste in mouth, and breathing/asthma related problems? Thanks again for providing such great information on your experience!
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RebeccaG
Regular Member


Date Joined Dec 2013
Total Posts : 20 Posted 1/24/2014 1:41 PM (GMT -7)
Hi Gondore - no unfortunately I haven't been given any information about the other participants symptoms. As far as I know our trial was based on having severe GORD symptoms (heartburn, reflux) and daily PPI use.
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GroverCat
Regular Member


Date Joined Mar 2013
Total Posts : 126 Posted 2/5/2014 2:42 PM (GMT -7)
Hi Rebecca,


I've sent off all of my tests to the doctor in Germany, and I'm waiting to hear whether I will be accepted as a candidate for surgery. If I decide to go this route, I was thinking about what I should tell a family member who came with me about how much time I should expect for recovery (if I find someone willing to pay for a ticket to Europe, they're going to want to do some sight seeing!)... how long do you think I would be out after the procedure? I know I couldn't do any lifting/strenuous activity for a while, but how long afterwards would you think I would have to wait before doing light tourist stuff like sight-seeing and walking around? Three days? Five?

Also, how are you feeling? How soon after the procedure did it take before your symptoms went away? Could I drink some wine or eat tomato sauce the week after surgery or would that be pushing it?

Thanks!
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liang7079
New Member


Date Joined Dec 2013
Total Posts : 14 Posted 2/6/2014 2:55 AM (GMT -7)
The more one thinks about how these new devices can't help but to think it's all to do with nerve functions (or dysfunctions) that causes all these currently chronic and seemly-incurable conditions (GERD, LPR, IBS, Gastroparesis etc.), why can't the medical system/companies work on really restoring the nerves we have instead of adding on foreign devices? The Stretta was the closest idea and least invasive but somehow not widely used.
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RebeccaG
Regular Member


Date Joined Dec 2013
Total Posts : 20 Posted 2/6/2014 12:21 PM (GMT -7)
Hi GroverCat

I would say you would need at least 5 days rest before attempting any kind of walking around as you need to get all the drugs and gas out of your system. Also, the painkillers can make you feel a bit woozy and may have other side effects like nausea and itching so could be disorientating, especially in a foreign country.

I was given an elastic brace to wear to hold my middle tight to help with the healing process so moving around wasn't too bad but definitely no lifting or strenuous activity for at least 2 weeks.

I'm really good thanks, my symptoms are almost non existent. I was able to start eating normally after just a few days - the effect of the device was noticeable almost immediately. The main impact on my diet straight after was more to do with the drugs and post-op rather than GORD.

Good luck - I have my fingers crossed for you to get good news from Germany!
Rebecca
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Gondore
Regular Member


Date Joined Jan 2014
Total Posts : 57 Posted 2/6/2014 12:57 PM (GMT -7)
Great to hear from you again RebeccaG! Thank you for keeping us updated.

Has anyone heard if Endostim has been successful in treating LPR symptoms at all? I am seriously considering Linx but I may try to go with Endostim down the road if it's a better option.
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GroverCat Regular Member


Date Joined Mar 2013
Total Posts : 126 Posted 2/6/2014 6:47 PM (GMT -7)
Thanks Rebecca. I'm really glad to hear you're feeling well, I will take all of the finger crossing and good luck I can get!
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Gondore
Regular Member


Date Joined Jan 2014
Total Posts : 57 Posted 2/7/2014 6:17 AM (GMT -7)
Please keep us updated GroverCat if you do have the Endostim. It's hard to find any patient info on it right now.
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GroverCat
Regular Member


Date Joined Mar 2013
Total Posts : 126 Posted 2/7/2014 9:18 AM (GMT -7)
Will do. If I go for it, it'll be this summer, and I plan to start a patient diary on the forum. Hope it comes to pass!
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Gondore
Regular Member


Date Joined Jan 2014
Total Posts : 57 Posted 2/7/2014 9:39 AM (GMT -7)
I think I am going to have the Linx procedure sometime in the next couple months if possible as I can't wait for the Endostim to make it's way to the US. :(
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GroverCat
Regular Member


Date Joined Mar 2013
Total Posts : 126 Posted 2/7/2014 10:04 AM (GMT -7)
It's very possible that I may end up with the Linx too if the Germany thing falls through. It is a big expense, and I'm committed to making it happen if I get the go-ahead, but we'll see. If you get the Linx (and if I do), well at least it's better than status quo even if it's not the perfect solution we may wish for. Hey, if we were both at this juncture ten years ago, there wouldn't be any options other than the Nissen, so at least we're starting to have some choices...
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Gondore
Regular Member


Date Joined Jan 2014
Total Posts : 57 Posted 2/7/2014 10:08 AM (GMT -7)
Yeah, I don't know if I would have the Nissen though I am very bad right now and would probably seriously consider it if nothing else was available. I just hope and pray the Linx procedure works. I am having crazy shortness of breath (all the time), throat pain, pain when talking, throat clearing, and constant lightheaded/dizzy (this is from PPI or Zoloft...haven't been able to figure it out yet). Between the shortness of breath and dizziness I can't even get out much as it's very hard to keep my anxiety under control. I am very thankful that new solutions like Endostim are in the pipeline and I would probably wait for it if I could handle this symptoms long term.f

Post Edited (phil-uk) : 2/15/2014 6:53:25 AM (GMT-7)


Pat Tall
Veteran Member


Date Joined Aug 2012
Total Posts : 950
   Posted 2/15/2014 9:52 AM (GMT -6)   
phil-uk thanks for the hard work in getting this information up. Sincerely appreciated.

Thanks. Am very interested in following - especially any information in the United States. Between your research input on this topic and hopefully from Just Passing Through. Moderators - let's apologize to JPT and get this going so we can all work at healing well.

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7184
   Posted 2/17/2014 7:54 AM (GMT -6)   
hi Pat,
The ball is In JPT's court. From what Bill has told me, he's free to return if he wants to, but will need to choose a new name for the forum to counteract the banning. It's his choice now.
best wishes,
Denise

GERD/Heartburn Moderator
Nissen Fundoplication 2/09
Allergy/Asthma

"Whatever you fight, you strengthen, and what you resist, persists.”

“Worry pretends to be necessary but serves no useful purpose”

“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”
Eckhart Tolle

GroverCat
Regular Member


Date Joined Mar 2013
Total Posts : 174
   Posted 2/17/2014 12:05 PM (GMT -6)   
Wow- thanks for recovering this thread! I just copied and pasted it all for myself! I thought I'd lost all this information...

depressed123
Regular Member


Date Joined Jun 2013
Total Posts : 33
   Posted 2/25/2014 2:22 PM (GMT -6)   
I've contacted Dr Sandeep who does the Endostim surgery in India, he says the Nissen can be undone and then do the Endostim surgery. Estimate will be USD 16,500 in a twin sharing room. Includes pre op tests. 5 night hospital stay. It's too big for me. I can't afford to do it now.

This is a message that Endostim has replied to Dr Sandeep:

Hi Sandeep this could be done and we have performed it in an Achalasia patient where it worked very well. However, gastro-esophageal surgery (e.g. Nissen) is a caution for us. This will be an off-label use so we cannot promote this. You can discuss the caution with the patient and proceed as an off-label use if you feel this is best for the patient. I would suggest he is completely evaluated with pH, manometry, Ba swallow and endoscopy prior to the procedure. We can discuss further if you and patient chose to proceed.

phil-uk
Regular Member


Date Joined Jul 2012
Total Posts : 190
   Posted 4/19/2014 3:19 AM (GMT -6)   
http://www.prnewswire.com/news-releases/endostim-les-stimulation-system-receives-ce-marking-for-mri-scans-255757431.html

THE HAGUE, Netherlands and ST. LOUIS, April 18, 2014 /PRNewswire/ -- EndoStim BV announced that the EndoStim LES Stimulation System has received CE Marking for use with magnetic resonance imaging (MRI), and is now conditionally approved for MRI scans of head and extremities. Current and future patients with the EndoStim system can now receive head and extremity MRI scans, often used for diagnosis of neurological and orthopedic conditions.

Both the EndoStim Stimulator and Implantable Lead underwent significant testing to demonstrate that the device does not malfunction nor pose any risk to patients when exposed to a 1.5 Tesla MRI machine using a transmit/receive RF local coil, used as described in detail at www.endostim.com/mri.

Because of its superior diagnostic capabilities, MRI use has increased dramatically in recent years. MRI is among the advanced diagnostic imaging technologies widely credited with earlier and more accurate non-invasive diagnoses of disease.

"We are happy to see the safety of the EndoStim system with MRI confirmed. From now on current and future patients who seek EndoStim's minimally invasive solution for severe reflux can safely undergo head and limb MRI scans and not be deprived of the superior diagnostic advantage of this test," states Dr. Virender K Sharma, EndoStim's Chief Medical Officer.

GroverCat
Regular Member


Date Joined Mar 2013
Total Posts : 174
   Posted 4/19/2014 9:35 AM (GMT -6)   
Hey-- thanks for posting! This is so good to hear, because I've got my Endostim surgery scheduled in a month, and I just found out the tendonitis I thought I had in my feet over the last year or so post-half marathon might actually be stress fractures, so I'm going in to see an orthopedic this Tuesday. I'd wanted to make sure I at least got an MRI to check before the Endostim because I was worried I might not be able to afterward. Now it seems that if I do have a stress fracture, they'll be able to do follow-up imaging post surgery later on this summer. Hooray!

sunbeam48
Veteran Member


Date Joined Jun 2011
Total Posts : 795
   Posted 4/19/2014 1:00 PM (GMT -6)   
I recently separately posted a link to a new (I think) research study on this approach. I will try to find it and post it here.

Here's the link: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3599161/

Post Edited (sunbeam48) : 4/19/2014 1:16:16 PM (GMT-6)


33333
Regular Member


Date Joined Jun 2012
Total Posts : 94
   Posted 4/21/2014 2:08 AM (GMT -6)   
Rebecca,

How are you lately? Can you give us an update?

Thanks

sk55
Regular Member


Date Joined Jun 2011
Total Posts : 225
   Posted 4/21/2014 12:10 PM (GMT -6)   
hi grovercat,

where are you getting your endostim surgery?

thanks

sk55

Supermedic
New Member


Date Joined Apr 2014
Total Posts : 3
   Posted 4/22/2014 7:45 AM (GMT -6)   
Hi all,

Just found this thread.

Please see mine - http://www.healingwell.com/community/default.aspx?f=45&m=3058217&p=1

Any help appreciated. I'm in the USA.

Thanks,

Supermedic :)

P.S. When will there be clinical trials here?

suzannejackson
New Member


Date Joined Jun 2013
Total Posts : 12
   Posted 4/26/2014 10:41 AM (GMT -6)   
This is a question for Rebecca of NZ ref the Endostim procedure.


Could you tell me how many people were involved in your trial and are you in contact with them and do you know if they are equally satisfied as you. It sounds very promising but as with Linx procedure not everyone may have a good experience. Would be nice to hear more post procedure experiences.

Thanks Rebecca.

33333
Regular Member


Date Joined Jun 2012
Total Posts : 94
   Posted 5/19/2014 4:50 PM (GMT -6)   
Does anyone know if the Endostim has become commercially available anywhere else other than Argentina, Germany and India?

Post Edited (33333) : 5/19/2014 4:05:04 PM (GMT-6)


speden
Regular Member


Date Joined Oct 2009
Total Posts : 175
   Posted 5/19/2014 8:54 PM (GMT -6)   
According to the Endostim website, there are treatment centers in these countries:

ARGENTINA
AUSTRALIA
AUSTRIA
CHILE
COLOMBIA
DENMARK
GERMANY
HONG KONG
INDIA
MEXICO
NETHERLANDS
NEW ZEALAND
SWITZERLAND
UNITED KINGDOM

Gerdobserver
New Member


Date Joined Nov 2013
Total Posts : 9
   Posted 6/19/2014 10:37 PM (GMT -6)   
Hi Phil,

Apologies if I missed this (and for being away since I first posted over here) but did you happen to go ahead with the procedure? Last I remember you were going to enroll for a trial in the UK. I read GroverCat got her procedure done from Germany and is doing as per expectations. I remain in wait-and-watch mode though my GERD symptoms have miraculously gone from being really-bad to tolerable.

Thanks.
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