HealingWell
Search Close Search
☰

Not Suitable for Endostim after failed Nissen

Support Forums
>
GERD & Acid Reflux
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/22/2013 12:48 PM (GMT 0)
 Hi,i made enquiries into the new endostim device for acid reflux and was told I would not be suitable as I have had nissen fundoplication surgery.Very disappointed to say the least.I was hoping I could take part in the trials for the new device as it sounds very promising.I don't see why having a nissen would make any difference,it wasn't explained why just a simple "not suitable"? Barry
Posted 4/22/2013 5:47 PM (GMT 0)
Hi Barry,

Chances are they're doing a study and are looking for a specific type of GERD patient.  Previous surgery could skew the results and cause problems for their results.

For example, I have allergies, yet I might not be suitable for a specific study because of something in my treatment, my age, or severity of lung problems.  This has actually happened to me.

Good luck finding an answer!

Hang in there,

Denise

Posted 4/22/2013 5:50 PM (GMT 0)
Barry,

Would you ever get a nissen re-do? Just wondering why or why not?

Posted 4/22/2013 6:22 PM (GMT 0)
Hi Denise,your probably right on that,i never thought of that.

Hi Doggbones, im currently waiting on test results to see if im going to have a redo or not.Ive been to see another surgeon who said he will do it" if he has too".I have a feeling the nissen is not for me,or I wasn't a good candidate for it.I have swallowing issues and reflux.
I just thought I would contact the endostim people as that would be an easier option.Ive lost faith in the Nissen through my experience and a lot of posts on here aswell,theres just too many variables. Barry
Posted 4/22/2013 6:40 PM (GMT 0)
Barry,

I tend to agree with you, I don't think nissen is the answer as it doesn't address the root cause. Have you considered a "take down" of your nissen over a re-do?

Posted 4/22/2013 8:06 PM (GMT 0)
Barry,

I understand your frustration with the Nissen procedure.  I wonder if your surgeon did the proper testing before deciding to do it. One of the biggest reasons it's important to have a highly experienced Nissen surgeon is that he/she can determine who is a good candidate for the surgery, and "weed out" those who will not be helped, or could even be hurt by having the Nissen done. 

It's definitely not for everyone.  Still, to others seeking information here, don't let the problems you read about deter you from seeking relief through a Nissen fundoplication.  On any internet forum, you're far more likely to find people having problems than in the general population.  Most people say goodbye to forums one they're healed and never look back.  I stuck around to help out, but most members rarely visit once they're back to normal and living their much-improved lives.

I'm really sorry you've had so many problems, Barry.  I wish  you the very best luck!

Best wishes,

Denise

 

Posted 4/23/2013 8:23 AM (GMT 0)
Thanks Denise for your reply. Im sorry if im putting people off the surgery,im just telling my story.My experience has not been a good one and I would not recommend Nissen Fundoplication to anyone .Barry
Posted 4/23/2013 12:15 PM (GMT 0)
Hi Barry,

I can't blame you a bit.  In yours situation I'd feel exactly the same way.  Still, I remember all the scary posts that kept me from having the surgery for six long years while my lungs were in horrible condition and my body was suffering permanent damage from the high doses of steroids I had to take for all those years.  I just wanted to offer a little positive counterbalance.  For some people it's exactly the right surgery.  I was one of them.

I totally understand your feelings toward the Nissen.  BTW, did you get all the prerequisite testing before your surgeon decided to do the surgery? It's very possible that you had issues that made the Nissen a very bad option for you.  It's just too bad that you didn't find out until after the procedure. 

Is there any chance that the surgery was done incorrectly?  What are the most bothersome symptoms that are persisting or made worse by the Nissen?

Hang in there, my friend!

Denise

Posted 4/23/2013 1:23 PM (GMT 0)
Hi,Denise,my surgeon had done 100+ nissens before mine so I took that as enough experience,he said that he had never had anyone with problems like mine,or I should say he registrar said that,i never seen my surgeon again after the surgery.No manometry was carried out,when I asked why I was told that it was not needed.There seems to be a lot of debate on this.
Anyway im waiting on results from all the tests I had done from another surgeon,hopefully he will have the answer. Thanks Denise
Posted 4/23/2013 7:02 PM (GMT 0)
Baza-

Sorry to hear of all the problems you are having. I question your surgeons decision that a manometry wasn't needed. All 3 of my surgeons said they would not do a nissen without this test because it tells them what is going on with the esophagus. A 4th surgeon I talked to about my last redo also said he would need a manometry done before surgery.

If I read your last post correctly, you didn't have any follow up appointments with your surgeon?

Take care,
Bill
Posted 4/23/2013 7:23 PM (GMT 0)
Hi Barry,

In the US, a manometry is a required test for a Nissen.  We come across a few patient here who didn't have one, but often they're the ones having problems.  Someone who posted not that long ago had some type of alternative test to show swallowing issues because they refused a manometry, and the surgeon wanted some information regarding swallowing reflex.

Since the Nissen is going to make it harder to get food through (and harder to get acid out), surgeons feel the manometry critical in making decisions regarding what type (if any) wrap is best suited for the patient.  For example, Joy (couchtater) was given a partial wrap because the manometry demonstrated she had swallowing issues.

Nobody likes getting it, but it's a necessary procedure that provides a wealth of information.

I just wish that there was some way we could help you find relief!  Sending healing vibes across the "Big Pond"!

Best wishes,

Denise

Posted 4/23/2013 7:46 PM (GMT 0)
Thankyou for your replies.I have a feeling that the lack of manometry test is going to be what has happened to me here.Ive had manometry with my second surgeon recently and im just waiting on the results. Im wondering if it turns out that all my problems are due to my surgeons negligence would I have a legal case against him? Thanks! Barry
Posted 4/24/2013 8:13 AM (GMT 0)
Hi Barry, Sorry to hear that you are not suitable for the endostim trial.
I don't think that you should give up hope though. Trials are being started in UK, Germany and India, and it looks like data is still being collected from the original cohort in Chile. With luck this could become more generally available in a few years and the experience gained during this time could broaden the criteria for candidates. There is a documented case of Endostim replacing a failed Nissen...

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/

Posted 4/24/2013 8:37 AM (GMT 0)
Hi phil,yes I read that a while back.It was a secretary that I spoke to and she didn't really seem to know much about it,she kept having to go and ask the answers to my questions. I think your right that this will become generally available in the future.I just thought I would try and get in on the free trials. Thanks Phil.
✚ New Topic ✚ Reply