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LPR patient, eligible for surgery. I need help deciding between the Linx and the Nissen.

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GERD & Acid Reflux
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Posted 9/22/2013 12:51 AM (GMT 0)
28 year old female, healthy weight, diagnosed with LPR.

For about 6 years now I’ve had shortness of breath along with cough and postnasal drip. I have trouble catching a full breath almost all the time, but it’s the worst when I exercise, as well as right after eating and when I lie down.
I’ve suspected it was LPR for quite some time, but it took a while to get the right diagnosis, because I almost never have any sort of heartburn. I was told I have adult-onset asthma, but inhalers have done very little to help me (current medication: 60 mg Dexilant, 500/50 Advair diskus, Albuteral inhaler. I would estimate that this medication combo makes me feel about 20% better than nothing at all).

Long story short, I finally have all the tests done, and my Demeesters score is above normal, and my doctor suspects that I have a small hiatal hernia, as well as a lazy LES.

I’m now eligible for surgery, and my surgeon has given me a choice of the Nissen or the Linx, and I’m having trouble making a decision.

Arguments against the Linx:
- My surgeon says that when it comes to straight LPR patients, the Linx has thus far (in his experience) been not as effective in improving lung symptoms as the Nissen. He says I can make the ultimate choice, but in his experience, the Nissen is more likely to help me.

Arguments against the Nissen:
- The long and weird recovery period and diet- not sure how I would go about taking off work for as long as I would need.
- Terrified of never being able to burp or vomit for the rest of my life.


As you can probably tell, I’d much rather have the Linx, but if it’s not going to help me as much, I feel it would be foolish to choose it. Can anyone share any experiences or insight that can help me decide?
Posted 9/22/2013 11:22 PM (GMT 0)
Hi if you go for the Linx and it is not ok it is at least reversible...the nissan is not reversable so if it makes you worse you are stuck with it. Also you can have the nissan after having had the Linx removed I believe but not visa versa. At least this is what one surgeon told me.

To my knowledge very few people have had the Linx removed..mainly due to difficulty swallowing ( dysphasia)....3 removals out of 100 in one test and I have heard of one here in the UK but the person made the mistake of having just soft food after the op so the device did not bed in properly. As with all implants flesh grows around it......but the Linx has to make a space for itself within the felsh so that it can move freely to open and close with the LES so it is essential to make it work by eating normal food, well chewed, but not soft foods and liquids all the time.. Once it is healed in its flesh casing it is secure in there and any pain and dysphasia should go away. This takes about 12 weeks (3 months) after the op. Torax give you a card that tells you what to eat and how to deal with dysphasia or anything that sticks and there is a graph that explains that it reaches a peak at 6 weeks and then gets less and less over the second six weeks.

I had the linx 9 weeks ago and my dysphasia (pain/difficulty swallowing) has gone. i can burp nice healthy burps and can eat normally as long as I remember to chew well and not eat too quickly....a good habit anyway.

For the first five weeks the Linx was like a miracle cure for me. I stopped PPi meds after the second week I was so good and i think that was a mistake as three weeks later what I believe is rebound set in and a few symptoms came back but not all of them. I can no longer taste my food repeating round the clock as I could before, I am not belching and burping all the time as I was before either. I can eat and then lie flat and nothing comes up where as before my dinner would literally come back up and I can now sleep in a bed rather than the chair i had been sleeping in for 2 years. My large hernia was fixed too so I can breathe better with that back in the right place.

The symptoms that have returned are much milder than before the op. I think they are down to rebound acid irritating my stomache rather than failure of the Linx. I am being woken up at night with some break through symptoms, mainly throbbing irritated tummy and mild sore throat and hoarseness at times but I am on less meds and it is a milder problem to tackle than before the op. And it is early days yet. My plan is to reduce my PPi dose very slowly over time and tackle any rebound with natural remedies. So not a 100% improvement but a big improvement non the less.

It is daunting having to face surgery and only you can make up your mind as only you know all the ins and outs of your problem. Read as much as you can about both ops and peoples experiences. For me the reversable Linx was best as I went in with the reassurance that if it made things worse it can be undone. As it is I am doing reasonably OK with it.

I wish you every success with whatever you decide and hope you feel better soon.
Posted 9/23/2013 4:08 AM (GMT 0)
Nissen has better outcomes. I'm in the same boat, I'm looking to get the nissan done now that I've got an OK from 3 doctors. Originally I had the TIF done... ohhh boy, that made my symptoms so much worse. I'm not messing around with new surgeries anymore... Nissens the gold standard and thats the best way to resolve lpr/breathing problems. It does sound scary, that why I went with the TIF in the first place...
Posted 9/23/2013 5:03 PM (GMT 0)
Irrationalwoman,

The Nissen procedure is the standard surgical approach. Have trust in your surgeon and be confident in their advice. You'll find lots of opinions about the Nissen, the Linx, the TIF and the Esophyx. When it came down to deciding, my surgeon said the Nissen would be the best procedure for me. I made sure to ask a lot of questions, did a whole lot of research and decided for myself that "if it's not broke, don't fix it" and went with the Nissen. Knowing how long the alternative procedures have been in place, and the years of experience my surgeon has had with the Nissen cemented my decision. Once you know what procedure you are choosing, then research and decide what your healing is going to look like. I knew, based mostly on what I read in this forum (thank you Denise and Bill and the others!), what my diet would be like post-op, how long I should expect to be hospitalized, potential complications, and in general what I'd feel like. All that preparation helped me have a successful procedure, and a rather boring recovery (which I'm thankful for)!

With any surgical procedure, and especially with one as this that is classified as major abdominal surgery (if anyone tells you differently turn and run in the opposite direction...especially if it's your surgeon!), you will experience pain and discomfort and some sort of inconvenience. But if you're prepared for it in advance, you know how to be ready for it and there shouldn't really be any surprises. The post-op diet wasn't all that bad (and allowed me to lose 20 pounds that I needed to lose, anyway) and was easy to get used to. I'm now 4 months post-Nissen and feel fantastic. I'll even go as far as saying it was one of the best decisions I've ever made. It's easy to find all the horror stories on the internet. They're everywhere. This forum is probably the BEST place to find information...especially from those of us that have had GOOD experiences.

Ask as many questions as you'd like here. There more prepared you are, the easier you'll feel about whichever procedure you'll choose, which can only benefit you when it comes time to have it done and are recovering.

Be well and take care,
-TonyG-
Posted 9/23/2013 5:36 PM (GMT 0)
From my experiences going around to Mayo, New York University, Medical college of Wisconsin, UW- Madison.... The TIF is not done often because I have been told it has poor results and I believe the LINX is offered at MAYO, not sure about the results, but the overall picture I got from everyone is that the nissen is highly recommended for severe reflux. If you have lpr, Dr koufman would recommend the nissen over the new procedures because the nissen is tried and proven. We know the long term results.
Posted 9/23/2013 5:38 PM (GMT 0)
TonyG,

I'm so jealous you can sleep on your back!! lol
Posted 9/24/2013 1:41 AM (GMT 0)
Thanks! Yeah, it's looking like more and more that the Nissen is the gold standard for a reason. But man, the recovery seems so daunting :(
Posted 9/24/2013 1:35 PM (GMT 0)
By the way, the nissen CAN be undone. It can also be redone if necessary. The surgeons stating it can't be undone either doesn't have the skills or just doesn't want to do it.

Take care,
Bill
Posted 9/24/2013 4:54 PM (GMT 0)
The recovery is only as daunting as you make it. Do your homework, ask questions, & get yourself and whomever is going to be your caregiver during your recovery organized and prepared. This site and the stories that the kind folks here have been sharing were very useful to me. I knew what to expect from the procedure itself, what NOT to expect from the hospital, and what I should expect when I got home. These are real people that have gone through the same pain and suffering you have with GERD and reflux, not doctors giving you textbook answers. I went in with the attitude of, "expect the worst, hope for the best" and made sure my family was prepared for anything that might come up. I was fortunate to have a fantastic surgeon that, despite a few complications during surgery, is skilled in the Nissen procedure.

The light at the end of the tunnel is easier to see when you have the switch nearby. Do your homework and stay in control of your own recovery. You'll have up days and you'll have down days. We all did. It's major abdominal surgery and should be expected. Don't rush through it and let your body decide what it's willing to tolerate. More than anything, use this forum to voice your fears, ask questions, and get reassurance. It's what many of us are here for!

Be well!
-TonyG-
Posted 9/24/2013 5:49 PM (GMT 0)
Well said Tony!

I would like to emphasize that we have been where you are and been through the recovery. This is SO valuable because the majority of surgeons haven't been there. They only know what they hear from some patients and what they are taught. This isn't always accurate.

We also are hear for you much longer than the usual surgeon is. We also will be happy to answer any questions to the best of our ability.

Take care,
Bill
Posted 10/3/2013 12:26 PM (GMT 0)
Hi there!
I just wanted to share my story. I decided on the nissen instead of the linx because I was worried about being able to have MRI after a linx. I was in a car accident in 2010 and have had about 6 MRI on my neck and shoulders since then and I guess the magnets in the linx prevent you from having MRI. Just another thought.

Also, I had the nissen and had a very smooth recovery and now, about 7 weeks out I feel back to better than normal and can eat pretty much anything. I know there are lots of bad stories on the net about the surgery, but there are so many successful ones too! I just thought i would share and let you know I am here if you have any questions.

Best of luck to you!
Posted 4/13/2014 7:06 PM (GMT 0)
What decision did you end up making? I am in the exact same boat as you are/where.
Posted 4/13/2014 8:02 PM (GMT 0)
Nissen has by far the best outcome record.
After a short time, for some immediately, you can probably burp again. You may however, not be able to vomit, but a lot of us just keep meds on hand to handle nausea.
The post-surg diet is not weird, just gradual, proceeding to normal.
You can't have an MRI with magnetic metal in your body.

But the bottom line is what does your surgeon say is the right one for YOU?
Posted 4/13/2014 9:29 PM (GMT 0)
what if you have migraines and have to be able to throw up?
Posted 4/13/2014 10:22 PM (GMT 0)
I am about 7 weeks post linx, and I know not everyone has great results, but so far, knock wood, I do. My surgeon found a larger hiatal hernia than what was shown on endoscopy (supposedly only 2cm sliding), so he repaired the hernia and placed the linx. I immediately had no more reflux and went off my ppi's.

I've had trouble swallowing, and there was a few day period in week 2-3 when I vomited up (and regurgitated up) almost everything I ate, but that passed and now I can eat anything. I might have a painful swallow at first, then it gets better. If I'm careless and don't make sure the first few bites go down, I can still get into a regurgitation situation, but then I can go back to eating the rest of my meal.

Despite all that, I'm 100% happy I had the surgery. I can sleep flat on my back, and there is no sign of acid or bile reflux, which I had before surgery.

And they now have determined that you can have MRI, it just can't be full strength.
Posted 5/7/2015 1:02 AM (GMT 0)
Hi Erica_LINX, glad to hear you're doing better! I'm going down the road of getting one, and wondering how you're feeling now?
Posted 6/12/2015 8:59 PM (GMT 0)
had one two weeks ago , I m very nervous it has nt worked and I m struggling to eat without wanting to be sick

hey ho

scott
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