***Would you do it***

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LocalGuy23
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Date Joined Sep 2011
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   Posted 12/7/2011 5:24 PM (GMT -6)   
Disregarding funds.....

Would you go to Europe to get the LINX procedure done for LPR if you had the chance......

My understanding is that since Nissen is permanent, there's no turning back.

With LINX, you can have it removed if it doesn't alleviate your symptoms.

It's a lot of leg work for us US citizens to book flights, hotel, etc. But would you do it if you had the opportunity?

LocalGuy23
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Date Joined Sep 2011
Total Posts : 620
   Posted 12/7/2011 5:52 PM (GMT -6)   
Well, the Doctor from Italy gave me the OK. I told him I wanted this asap....so he's finding out the dates available. What do you guys think.....am I rushing into this?

bowecho
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Date Joined Nov 2011
Total Posts : 146
   Posted 12/7/2011 5:59 PM (GMT -6)   
Personally? No.

I read about all of the different types of surgery out there before I settled on Nissen. I went with Nissen because surgeons have been doing it for over 50 years. A type of surgery doesn't exist for 50+ years if its not a good surgery. There is a ton of data about success rates, complications, so much data that you couldn't read it all if you wanted to. But, you can get a really good idea of what you are getting yourself into. I then found a surgeon who's own track record showed a higher than average success rate and a much lower than average complication rate. The surgeon was highly experienced, performing 1,000 a year and teaching the surgery at a University here (my surgery was observed by 3 students). The surgeon reviewed all of my tests to ensure I was a good candidate, which is very important. With all of that, I had more than enough information to make a decision, and I decided to go with the surgery. I knew there were chances of complications, chance of failure. That's true in every surgery. But at least I knew EXACTLY what I was getting myself into.

As for being permanent, that's not the case. It can be reversed. In talking with my surgeon, he has offered to reverse the surgery to some of the folks that did not receive much relief. They turned him down, as the little bit of relief was better than nothing.

LINX and some of these other surgical solutions just don't have enough data for me to be comfortable with them. I want to be able to make an informed decision. I want to see long term studies. Its just still too experimental to me. I'm only 32, so I want a solution that will last a long time. With Nissen, my surgeon was able to show me the long term data.

I was diagnosed with NERD, Non-Erosive Reflux Disease, and my symptoms were constant regurgitation and chest pain. I also had an LPR type symptom of always having the feeling of something in the throat and excess post nasal drip. So far, the regurgitation and chest pain are gone, and the LPR symptoms have decreased by about 50%. The surgeon told me those types of symptoms can take a few months to completely resolve.

Was the surgery easy? No way. Its tough. But I'm happy to have a few months of discomfort to have many years of happiness. I'm happy with my decision, and I wish I would have decided to do this a long time ago.

Tony

LocalGuy23
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   Posted 12/7/2011 6:06 PM (GMT -6)   
Tony, did you have any stomach pains like gastritis as well. Before all this started, I was on the the traditional PPI therapy 2x a day. It did nothing but gave me stomach pains. Now I have a constant stomach pain...from gastritis/PPIs. I would rate it a "2-3" on a scale of 10 being the worst. But I feel if the valve could get fixed....the stomach would have a greater chance to heal.

I spoke with a person "edopter" on this board and he's doing really well with the LINX surgery. That's why I wanted to pursue it. It seemed more natural with less complications. I know the long term data isn't there but It seemed reversable. I didn't know Nissen was reversable. I'm have a meeting with my Nissen surgeon tomorrow. He's the best in my state (Hawaii) performing the most surgeries. He's well known and he assured me great results in our first consultation that he could get rid of my LPR/GERD symptoms.

Do you have any suggestions as to what kind of questions I can ask him? Should I bring up the LINX to him? Thanks.

bowecho
Regular Member


Date Joined Nov 2011
Total Posts : 146
   Posted 12/7/2011 6:18 PM (GMT -6)   
Personally, I see it as less natural. You're having to depend on a device. I just don't like that.

My GI doc did find mild gastritis on both of the scopes I've had in the past year. I don't have stomach pains though. No idea what caused it. Biopsies came up showing everything was fine.

I would take advantage of every minute you have with the surgeon. I met with my surgeon twice for about an hour each time. I had written down many questions. I wanted to know everything about his specific results. He gave me a lot of information. Don't be afraid to ask anything. I would definitely bring up the LINX and that you are considering it. Maybe he's been following it. Won't hurt to ask.

Tony

LocalGuy23
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Date Joined Sep 2011
Total Posts : 620
   Posted 12/7/2011 6:23 PM (GMT -6)   
Thanks Tony, I'll begin my list very soon.

As far as LPR symptoms go.....did you ever have the feeling like it was some sort of vapor coming up. That's the impression I'm getting since it's happening when I'm not lying down.

LocalGuy23
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Date Joined Sep 2011
Total Posts : 620
   Posted 12/7/2011 6:23 PM (GMT -6)   
Thanks Tony, I'll begin my list very soon.

As far as LPR symptoms go.....did you ever have the feeling like it was some sort of vapor coming up. That's the impression I'm getting since it's happening when I'm not lying down.

bowecho
Regular Member


Date Joined Nov 2011
Total Posts : 146
   Posted 12/7/2011 6:29 PM (GMT -6)   
I've never felt any kind of vapor coming up. What came up was whatever I had just drank or eaten. A few weeks ago if I would try to drink a glass of water, the water would try to come back up 4-5 times after. Same with meals, but liquids were worse. That constant regurgitation (40+ times a day according to the 24hr pH test, and we did that test on one of my good days) was definitely causing my chest pain.

My symptoms were worse when not laying down too. Laying down and nighttime never bothered me. Actually, I felt my best in the morning before drinking or eating.

LocalGuy23
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Date Joined Sep 2011
Total Posts : 620
   Posted 12/7/2011 6:32 PM (GMT -6)   
hmmmm.........it's very odd how LPR symptoms vary. My ENT looked at my mouth and confirmed it to be acid reflux....but I never felt and reflux.....like NERD. I don't have any erosions in the esophogus...yet. But I know the malfuction of the valve is contributing to some of these pains and it needs to be tightened some how.

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 12/7/2011 11:56 PM (GMT -6)   
Like you, I also have LPR.  LPR is a special complication of GERD, because not only is the LES not functioning properly, but also the pharyngeal sphincter.
 
I had the TIF surgery in August.  If the LINX was also offered here where I live, would I have made that choice instead?  No, for the following reasons:
 
1. It is a new procedure, with very few experienced surgeons.  There are those who would argue that it is a simple procedure, and once given some weekend training, a surgeon could begin doing the procedures right away.  But that's not experience.  You shouldn't hire a surgeon based upon what he knows about your procedure -- you should hire him based upon his experience upon viewing your special case once he opens you up, and/or immediate problems he sees.  This only occurs after a procedure has been done a significant amount, by various surgeons, who report their results in a peer-reviewed fashion.  You wouldn't see this sort of knowledge base in the U.S. for quite some time.
 
2.  I've watched the demonstration video.  I'm not convinced there is enough attraction between the magnets to accomplish a significant amount of pressure on the LES...nor would I think it be safe to exert enough pressure to clamp off the LES, even if they could.  The pressure point...ring...is actually very small, maybe an eighth of an inch, vs. a TIF or Nissen that covers an area of 2cm or so.
 
3.  What happens when scar tissue forms around and between the magnets?  Wouldn't that limit the amount the magnets can be attracted to each other?
 
4.  As a matter of safety, I would never travel overseas to have serious surgery.  We have the best doctors in the world right here in the U.S.  There is a reason for the protections afforded by the various medical organizations.  The fact that surgeries are available overseas doesn't necessarily make them better, or more advanced, than what it available here.  What sort of recourse do you have if there are problems? etc., etc.
 
Yes, the TIF began overseas first, then was accepted and peer-reviewed here.  But it was done enough times, and had enough of a safety record, that it was accepted.  Maybe the LINX will follow suit.  But do you want to be a guinea pig?
 
5.  I wouldn't base your decision off another's experience you read about on this messageboard, especially if this person is only two weeks into recovery.  All that says is this person made their own decision and went through with it.  It doesn't take into consideration a whole host of factors, not to mention that two weeks into recovery isn't near enough time to evaluate the potential success of something.
 
From what I know now, after going through the TIF, I can see that it's unlikely that LPR sufferers can be sufficiently well-served by these "bridge" procedures (like the TIF or LINX) to be symptom-free.  The problem is what I referred to at the beginning of my post...the additional weakness of the top of the esophagus leading to the throat.  At best, these surgeries will probably not bring most patients beyond a normal DeMeester score, which means there are still a significant number of reflux episodes each day...which will reach the throat.  This is where I'm at currently, still managing symptoms.
 
There is only one procedure with any chance of eliminating all of the reflux, and that's the Nissen.  In order to understand this means considering why it is that this surgery works so well.  The reason we reflux is because of the peristalsis of the stomach moving its contents towards the small intestine.  If you've ever watched a snake, or a worm, move, this is how peristalsis works.  The muscles contract one after another, from the top of the stomach where the LES is, to the other end.  When the LES is weak, this contraction will also squirt reflux into the esophagus.  But after the fundoplication, when the peristalsis occurs, the surgical site will clamp the LES closed at the same time.  The closure of the valve is done by muscular contraction, which is how it's supposed to be.  No other procedure replicates this.
 
Forgive me for playing devil's advocate.  Hope the other side of the argument is helpful.
 
-Bruce

LocalGuy23
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Date Joined Sep 2011
Total Posts : 620
   Posted 12/8/2011 12:12 AM (GMT -6)   
Bruce, if you don't mind me asking, what were your LPR symptoms.

My surgeon is convinced he can relieve them through Nissen...

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 12/8/2011 12:23 AM (GMT -6)   
Hoarseness/laryngitis, asthmatic symptoms, and dysphagia are among the worst.  Even sleeping on a sleep incline, and taking Gaviscon before bed, I still wake up with burning in the back of my mouth...presumably because of the acid vapor.  I am intolerant of PPIs, as they cause massive headaches.
 
Last year, when the symptoms progressed and became worse, I had a persistent throat spasm for about seven months.
 
Before the surgery I had a DeMeester score of about 25, now it's 4-5, with about 25-30 reflux episodes daily.  (I had another Bravo study done in October.)
 
-Bruce

LocalGuy23
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Date Joined Sep 2011
Total Posts : 620
   Posted 12/8/2011 12:32 AM (GMT -6)   
My DeMeester score is 23.

But I present atypical symptoms. Sore throat, mouth and tongue sensitivity, and even wear on my enamel.

I wish more research went into finding a good solution for LPR...not just GERD. I'm not talking about medicines either cause that did nothing for me except gave me a sore stomach.

I thought of the LINX as less invasive and better tolerated compared to fundo and has the advantage of being easily reversible if needed.

I do believe it is a "vapor" that's causing the pains and not a liquid reflux. I felt a liquid reflux twice in my life......when this first all happened. After that....it was strictly vapor.

Bruce, the odd thing is when i press a certain location on my abdomen/stomach right under my left rib cage, I get a sense of relief like I'm putting pressure on the valve or pressing a pressure point of some sort. It reduces the vapor a lot.

I even tried putting a belt around my chest to see if that would help and it did to some extent. But that's when I started realizing if the LES could be repaired or fixed....my symptoms could be reduced a lot.

What are your thoughts....

LocalGuy23
Veteran Member


Date Joined Sep 2011
Total Posts : 620
   Posted 12/8/2011 12:32 AM (GMT -6)   
My DeMeester score is 23.

But I present atypical symptoms. Sore throat, mouth and tongue sensitivity, and even wear on my enamel.

I wish more research went into finding a good solution for LPR...not just GERD. I'm not talking about medicines either cause that did nothing for me except gave me a sore stomach.

I thought of the LINX as less invasive and better tolerated compared to fundo and has the advantage of being easily reversible if needed.

I do believe it is a "vapor" that's causing the pains and not a liquid reflux. I felt a liquid reflux twice in my life......when this first all happened. After that....it was strictly vapor.

Bruce, the odd thing is when i press a certain location on my abdomen/stomach right under my left rib cage, I get a sense of relief like I'm putting pressure on the valve or pressing a pressure point of some sort. It reduces the vapor a lot.

I even tried putting a belt around my chest to see if that would help and it did to some extent. But that's when I started realizing if the LES could be repaired or fixed....my symptoms could be reduced a lot.

What are your thoughts....

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 12/8/2011 12:53 AM (GMT -6)   
I'm not sure what it is that you're asking.  Is it possible that the pressure that you are putting on the LES is enough to reduce symptoms?  Possibly.  Would it be prudent to extract this experience to a comparison to the LINX?  No.  Would it be safe to wear a belt around your lower rib cage all day long?  Definitely not!
 
All LPR symptoms are "atypical".  Heartburn is "typical".
 
I'm surprised you can "feel" the vapor, and know when it stops.  If the reflux has caused damage, then it is there and symptoms won't turn on and off based upon any pressure you might be exerting on the LES.  Color me skeptical.
 
The LINX is somewhat less-invasive than the Nissen...certainly less radical.  But you must ask yourself, does "less radical" equate to something that will give you good results?  In my experience, the answer is no.  Would I have known what I do now if I hadn't had the TIF surgery?  No.  I was a professional singer before all this happened to me.  We all have our own stories about how this condition has ruined our lives.  I would give almost anything to be able to sing again...but I'm still not quite to the point that I would sign on the dotted line for a Nissen.  I know exactly where you're at right now.  I chose the TIF because it was an easier stretch for me to make than the Nissen, and I felt it was worth the risk to possibly be free from this and restore my voice.
 
I understand what you're facing.
 
-Bruce

LocalGuy23
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Date Joined Sep 2011
Total Posts : 620
   Posted 12/8/2011 1:01 AM (GMT -6)   
I guess how I noticed it was before all this happened....I use to excercise daily. When this hit, everytime I excercised I would feel the vapor come up to my throat and it would sort of burn but uncomfortable like I was short of breath. But, when I would hold that spot on my abdomen, it would go away......not sure what was happening but just something I realized.

Nissen is a big deal and I wish there was a less invasive option than the "gold standard" surgery to help this condition. I wish I could forsee the future and if it would fix my problem.....I would no doubt pursue it. My biggest fear is going through it and not alleviating my LPR symptoms. At this point, I don't even feel GERD, just LPR.

LocalGuy23
Veteran Member


Date Joined Sep 2011
Total Posts : 620
   Posted 12/8/2011 1:01 AM (GMT -6)   
I guess how I noticed it was before all this happened....I use to excercise daily. When this hit, everytime I excercised I would feel the vapor come up to my throat and it would sort of burn but uncomfortable like I was short of breath. But, when I would hold that spot on my abdomen, it would go away......not sure what was happening but just something I realized.

Nissen is a big deal and I wish there was a less invasive option than the "gold standard" surgery to help this condition. I wish I could forsee the future and if it would fix my problem.....I would no doubt pursue it. My biggest fear is going through it and not alleviating my LPR symptoms. At this point, I don't even feel GERD, just LPR.

bowecho
Regular Member


Date Joined Nov 2011
Total Posts : 146
   Posted 12/8/2011 1:34 AM (GMT -6)   
I think anyone that has had this or any surgery wishes they could see the future to know if it helps. In my situation, my symptoms have controlled my life for a long time. They were damaging my performance at work, my relationships with my fiance and friends, and really screwing up my life in general. I knew I had to take action and do something, after trying every medicine and natural remedy you could find. Could it be unsuccessful? Maybe. But I had no choice.

Its only been two weeks, so I have no idea how I'll feel in 3 months, 6 months, 2 years. Signs so far point to success, but if it ends up unsuccessful, I know at least I tried. Its not like its going to make me any worse than I was before. The worst thing that could happen is I end up how I was before surgery. I'll eat normally again, just takes time.
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