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21yr old...Nissen vs. Linx?

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Posted 3/8/2014 6:09 PM (GMT 0)
Hello everyone,

Sorry new person here. Here's my long story short, I'm a 21 year old female with GERD. I was diagnosed July 2012 and started on Prilosec which worked for almost a year. Since then I've tried 5 other PPIs & nothing seems to take care of all the pain and symptoms. I get really bad epigastric/upper left abdominal pain, heartburn, sour taste in my mouth & the disgusting horrible belching after I eat. I basically can't eat anything without feeling some kind of reflux symptom, I've lost 20 lbs in the last 2 months (& I really didn't have 20 lbs to lose). I've had 2 EGDs (showed moderate to severe esophagitis), 2 CT scans, bravo pH study (Demeester score of 73) & this past week I had a manometry & another pH impedance study done which I'm still waiting on the results. So, now I have the choice between a Nissen & a Linx. I can't decide which one would be better for me. I'm afraid of the Linx since it's so new & not being able to have MRIs & not knowing how long it will last. But I'm also afraid of the Nissen & the side effects & potentially having to have it re-done. Anyone else had either of these procedures done at a young age? I really have no idea what to do! Thanks for the help :)
Posted 3/8/2014 9:45 PM (GMT 0)
I'm 29 and trying to decide about the LINX. For what it's worth, you can now have MRIs that are given at low intensity (.7 teslas) and MRIs with LINX will probably become more feasible in the future with appropriate adjustments. My main concern at my age is redoes with the Nissen. If I live to be 90 and even if (best case scenario) they last 15-20 years, that's still a lot of redoes. As for the LINX... it's new, and nobody really knows any farther than 5 or 6 years out. Check out the LINX community page on facebook for peoples' stories with LINX so far. At the very least, if the first generation of LINXers start having issues, you can have yours proactively removed and fall back on a Nissen.

Best,

GC
Posted 3/9/2014 6:15 AM (GMT 0)
@gymstar

I've definitely had that debate personally as well (age 35, GERD since 2011, sick of it!). The nissen is definitely a tried and tested surgery and has been around for decades. It also has the benefit of improving gastric emptying, so if any of your GERD is caused by delayed gastric emptying, this could be a benefit (have you had a gastric emptying study)? But you also lose a third of your stomach and have a long recovery time (6 months ish?). I'm already a pretty skinny person, so I don't know how I would get enough food!

Thus, the LINX recovery time (fast!) and other benefits are very seductive. The inability to get an MRI disturbs me a bit - What if I got in a car wreck with a head injury and no one was there to tell the doctor I have a magnetic implant before giving me an MRI to check for internal bleeding?

So I guess I'm equally undecided, as you are. There's also a third device (the Endostim), which also seems very interesting, although it's not yet FDA approved in the US.

@GroverCat

Can you link to a study / reference indicating that low intensity MRIs are allowed with the LINX? I have heard this randomly, but haven't actually seen any data / proof from the company to back it up? I'd also love to see that FB page you reference to read other people's Linx experiences.
Posted 3/9/2014 10:27 PM (GMT 0)
I am 19 and just had a nissen done 3 months ago. In general, the recovery was not nearly as bad as this forum made me think, but you do have to be prepared for the worst in case that ends up happening to you. The pains from my reflux were killing me from my diagnosis in 2009 at age 14 until this past December when I had my operation.

I cannot say I had a hard time deciding between the two surgeries since in the end I did not qualify for the LINX surgery being under 21. It's a requirement that probably none of the designers put much thought into seeing the average age of GERD patients, but when I went to request the surgery as someone under 21, I was told that that rule wouldn't change for me and I would have to pay for it all without insurance. If I did have the choice, I would have been very happy choosing the LINX, but now I am as happy with the nissen as I thought I would be with the LINX.

I have a recovery journal if you want to look at that. It has all the details from my surgery up until now and I will continue to update it. You can find it from my profile. In general, immediately after my surgery, I had a very restricted diet of all liquids for 2 weeks and then slowly added back foods after that. 8 weeks after the surgery, I was back a full diet and have been able to swallow anything and everything since then. The difference between now and before surgery is now I chew much more thoroughly and eat a lot slower, but that has never created any problems and isn't a bad thing in any way. In the 2 weeks that I ate mostly jello and sherbert, I managed to lose 20 pounds, and I have successfully kept 15 pounds off, dropping from 240 to 215. If you are on the other side of this weight loss topic, you can ask for advice on how to gain more weight without eating a lot of food. There are options out there.

Other than food, there were a few pains that were new immediately after the surgery, but only lasted a couple weeks and were much, much better than heartburn. If you can avoid tasks that specifically make these abdominal pains worse (which very few activities do), you can continue to live a normal life while your recovery slowly progresses. The recovery does take a long time, but that's because there are several different things that need to heal and not because nothing gets better until then. I have had zero heartburn since my surgery and my teeth have stopped melting, which is great, but there are still some pains that I will have to wait longer to heal.

When I woke up from my surgery, my surgeon told me he was stunned how the outside of my esophagus was just as inflamed as the inside of my esophagus. Literally the entire length of my esophagus was scar tissue from years and years of acid exposure and having my esophagus saturated with acid. To me, this means the fact that my surgeon was surprised means that not everyone that has a nissen has this much scar tissue, but no matter what degree damage you have, that scar tissue will take a long time to heal. Right now, the only pain still remaining in my esophagus is from this scar tissue. Even though it is no longer getting damaged, it will continue to hurt me for a long time until it heals. This is what takes around 6 months for most people, and will probably take longer for me, but in the meantime I am actually living a normal life and getting to do most types of exercise that don't hurt my surgical site too much.
Posted 3/10/2014 6:52 AM (GMT 0)
Sure, speedygerd, here's a link to the facebook page:

https://www.facebook.com/groups/201278776669716/

(you have to request membership, as it's a closed group)

And my source, from the Brian Louie Blog at Swedish Medical:

http://www.swedish.org/physicians/brian-louie

"Use of MRI and LINX

Torax, the company who designed and manufactures the LINX device, has received FDA support for the use of MRI with the LINX device. This conditional approval allows for patients to undergo and MRI that is 0.7 Tesla or less. I am trying to clarify with our radiologists what a 0.7 Tesla MRI will cover.

"

So, I gather from this and from what my own surgeon told me (which concurs with Louie), MRIs will to some degree be allowed going forward, but specifics are still being hammered out.
Posted 3/10/2014 1:26 PM (GMT 0)
Here's the Linx Instructions Manual (from the manufacturer) explaining MRI--see section 6--- this might help all who are researching the Linx

http://www.toraxmedical.com/linx/downloads/LINX%20Reflux%20Management%20System%20-%20Instructions%20for%20Use.pdf

https://www.facebook.com/refluxhelp

This is another FB page re Linx experience-- no password or invitation needed to read all the information.
Posted 7/1/2014 2:46 PM (GMT 0)
Hullo Gymstar,

You don't mention if your tests have shown that you have a weak sphincter or hiatus hernia, if no, then have you tried a strict diet ie 'Dropping Acid' The Reflux Diet Cure, by Dr. Jamie Koufman? I had dreadful GERD symptoms for two years and followed a diet very similar to that suggested in the book, it took over two years but my symptoms did eventually subside, but you have to stick to the diet, you can never go back to the old foods. I also do Diaphramatic Breathing and yoga excercises to strengthen the LES and oesophagus, these need to be done everyday. Also, I use Gaviscon Advance if I get a reflux episode.

It is well worth trying the above if you haven't done so already, but it does take time. Good luck and hang in there - things can get better even it doesn't happen overnight.
Posted 7/1/2014 6:19 PM (GMT 0)
I'm in the same boat. I've had reflux for 10+ years.

The LINX makes sense to me. So I'm just buying as much time on PPIs as possible to see the long term results. Maybe another 3 years, we should have a better idea.

I have seen stories of doctors having the LINX themselves. That alone is very encouraging.
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