Linx Procedure 2017 My Experience

I've been having a strange issue for almost 3 years now that my GI can't seem to figure out. I'm currently just shy of my 40th birthday. about 12 years ago I was diagnosed with GERD and put on a daily PPI. It worked fine. I was on it for 9 years without much issue other then it caused slight issues with loose stools and occasionally nighttime intestinal gas pains. But those were easily manageable. 3 years ago something happened. I suddenly started to feel horrible all the time, and every time I ate anything I felt nauseous and bloated. I hadn't seen my normal doc in years so they couldn't get me an appointment for several months so I bypassed them and went straight to a GI. The first thing they did was schedule me for an endoscopy and colonoscopy. Those were over a month out so in the meantime I decided to try stopping the PPI. I got horrible heartburn daily, but the other symptoms subsided. However the GI doc found barrets when he did the endoscopy so he said I needed to go back on the PPI. I did and about 6 weeks later something new developed. I started getting this horrible pain in my upper chest. It's a burning pain, kind of like heartburn, but different. He thought I needed more PPI so he put me on twice a day dose. It got worse. So he switched to a different PPI. It worked for a couple weeks then came back. He then switched me to a lower dose, twice a day. Didn't work. He then tried high dose H2 blockers instead. Same problem. So finally I stopped taking all acid reducing meds and the pain subsided, but the heartburn came back. And now when I get heartburn it's bad. It's super painful, regurgitation in my mouth, etc... So I'm stuck in this situation where I can't take acid reducing meds of any kind without flaring up this other unknown issue (I've had dozens of tests) but if I don't I get horrible heartburn. I've figured out over the years that I can tolerate low doses of H2 blockers as long as I take a break every few days. But that's not really a great way to live. I'm basically on a cycle of 3 OK days followed by 2 bad days.

I've recently been considering getting the Linx done to see if I can stop the reflux without meds. However when I asked the GI doc about it he said that because my official diagnoses is "functional heartburn" the results could be unpredictable so he didn't recommend it. After reading the posts in this thread about how hard the recovery is, and how some people still get some reflux, I'm reluctant to try because I wouldn't want to go through all that pain and recovery and have it not work.

But there are two things I know for sure.... 1) I have reflux 2) I'm unable to tolerate any acid reducing meds for more than a few days at a time without flaring up the other issue. So what other options do I have? I have barrets already and don't want to get cancer so I can't just live with the heartburn. And if I continue on my current cycle I could still get cancer and/or damage whatever hurts when I take the meds.

I live in a relatively small town with only one GI practice. There are 5 doctors I think. I saw another one once for a second opinion, but he offered no other options. Maybe I should look into going to a big city and seeing a GI doc there to see if they can offer any further insight.

I live in Northern Nevada. Reno is close, but they don't have many GI docs either. I could drive to Northern CA cities like Sacramento or even the bay area if I had to. Does anyone know of a really good GI doc in those areas? Perhaps one that also does Linx so that if I decide to go that route I don't have to see yet another doctor?

I am approaching 3 months now after my LINX and Hiatal Hernia Repair.

All seems to be well. I had several bouts of nausea but I am attributing that to the stomach flu.

Except for the first 3 weeks its been a good experience for me. It seems as long as you stick to the eating instructions you will be fine.

If you do not you risk what happened to me. A visit to the emergency room and an endoscopy to clear things out.

Saying all of this, I am not sure I would go through all of this again if presented with the same choice. First it is no small operation when you throw in the hernia repair. Its about 3 hours. So you have the risk of surgery and post surgery.

It all depends on how bad your reflux is and the toll it is taking on you. For some it would be a no brainer. For me it was a borderline decision. At 71 I was managing things with PPIs. But, I decided I wanted to rid myself of the reflux if possible. I had not yet experienced side affects from the PPIs but wanted to get off them.

As it turns out I am back on them for awhile as the pain meds I took after surgery gave me a stomach ulcer. So need to take them for 3 months to try to cure that.

Nothing is a sure thing. But the trick is to find a good surgeon and a good hospital. I got lucky with the Surgeon and not so lucky with the Hospital. If I had to do it over again I would head to Mayo Clinic in Arizona for the Surgery.

My thoughts this morning

Rick

Just got my Linx 13 days ago. I call it Satan's corset. No more than one small bite or swallow I spasm and vomit. Only 10mg valium will give me relief. Lost 17 lbs since surgery. How much longer?

SharonZ said...
DKAYLOR:

It's quite normal to lose weight initially, after surgery. Most people find that as their diet progresses to solid foods that they put the weight back on.

SharonZ it has been almost 7 mths, and I am just now started losing...Plus, I can't eat as much as I used to, more so now than when I first has it done... trying to decide if I need to make an appt. with my doc, but I do not want to go through all those procedures again.

Any updates on the linx?

6 month update...
After nearly 1.5 years of sleeping 75% of the time in a recliner, if you can call that sleep, I've been well-rested and sleeping in bed like a champ since surgery on Feb. 5th, 2018. I continue to have some dysphagia and I am talking with my surgeon about the need to do the upper GI scope and stretch the device a little. I have been having issues with heartburn, sometimes in the severe category, but ZERO food regurgitation at night. I've been eating tums and similar tablets like candy, at times, and I've been taking a double-dose of generic Zantac or Pepcid, twice a day...but not on the PPIs anymore. The goal is no more medications!!!

I've been concerned that the LINX device is getting caught in a slightly open position on the scar tissue that my body has built around it. I say this because when it happens, I have the very bad heartburn and I'm chewing acid relief tablets like candy, and I'm just miserable...feels like the acid is damaging my esophagus. It seems to occur after a few dysphagia episodes from eating something that might get slightly caught when swallowing. It remains bad until I eat something else that might dislodge it, and I feel good again. This is just analytical guesswork on my part. However, I am also seeing that there is a recall notice on the FDA's website, regarding some manufactured devices that might have a magnetic bead separate from the ring wire, and cause failure in the device to close.

Here's a link to the information.
https://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfRES/res.cfm?id=163589

I'm meeting with my surgeon this week and I intend to question if my device falls into the group, and if so, we need to do more testing to see if he needs to do another surgery and replace it. Otherwise, it has to be stretched.

Like a few others, I have had a few episodes of nausea and vomiting. The first came out of nowhere. It has occurred on 3 separate occasions, while I've also experienced a few more that were triggered by the dysphagia. I'm hopeful we'll get this figured out so life can, hopefully return to normal after months of this roller coaster. Everything else...my weight loss stopped at 30 pounds. My energy levels are back to pre-surgical levels, and the only other thing I've dealt with has been occasional hypoglycemic episodes, from avoiding some types of foods and not maintaining a balanced diet. The surgeon put me on muscle relaxers to calm down my esophageal muscles, and it helped me swallow easier move past the blood sugar issues. I'm not diabetic, but hypoglycemic episodes is something my mother also has from time to time. They are not fun, but I think I have it back under control again.

I'll check back in after I learn more.

Barry

Katie7
Thank you for the post and questions
Les means lower esophageal sphincter
Also the size of the hairal hernia is a big deal. Either a stitch will fix it or if it’s to big u need a mesh.

Foods.. I lived off baked potatoes and soft meats. Pudding ensure etc. no breads as it doesn’t pass linx well until your throat muscles get strong again.

The manametry test was horrible. The worst. My wife videotaped mine with her phone. Stick a long cord up your nose run it down your throat and sit the cord in your chest and tell you to swallow sips of water ever 30 secs. I almost walked out when I saw how long the cord was that was being placed down my throat while I’m awake.

I had a rough go with foods I suggest starting at thread 1 and follow my updates. Lost 35 lbs total but a year later I’ve put back on the weight as I wanted to.

I want to share Another flip flop view or change of heart on my linx
I was on a business trip, I usually have a few beers early and space them out but i crammed in 4 beers in a hour and a very heavy pasty with marinara source. I think the presdurecand gas from the beer and the food slowly presses my linx open. I was. Up the whole night with the worst case of acid reflux it reminded me of three years. The reflux and acid went away two days later and I’ve been good ever since. I told my wife I know I complained about getting the surgery and the side effects but I’m now reminded of how painful the reflux was and how glad I am that I do not experience it daily so that’s a complete flip-flop of my last post

HELP :-( —- I am exactly 7 days post op from having LINX procedure and hiatal hernia repair. I have nausea most of the day, and I am having to MAKE myself eat jello & yogurt, & I can only seem to tolerate warm beverages. Doctor prescribed me Zofran 8mg for nausea and it doesn’t help the nausea any. And let me just say my “honeymoon phase” lasted about a DAY OR TWO....???My discharge papers said the dysphasia phase is at 3-8 weeks post op. I think I’m having that phase NOW at day 7! I cannot eat or drink without feeling nauseous. Am I jumping to conclusions since I am only 7 days out? Whenever I feel like I am hungry and able to eat, it just backfires because I feel like I can’t swallow my food and I get hiccups BAAAAD and my mouth salivates and I spit up what looks like just clear liquid, probably my saliva??? I’m soooooo miserable! I go into complete panic mode when I can’t get food to go down. My son constantly asks if he needs to call 911. Maybe he does!! Ha . All joking aside, SOMEBODY TELL ME , will this get better? Bc I am DYING over here! I go back to see my surgeon on next Thursday, 11-1-18 and I am so scared of him having to go back in..... we will see! Meanwhile I am writing down all I am feeling so that I will cover everything with him, and go from there....
This is NOT the way I want to lose weight. I feel like I need to go buy some Ensure because I am getting zero nutrition right now. I’m so concerned.....
Thanks for any help you could give!
Chad, I did read that your doctor had to go back in and dilate? I am freaking out for real.

*** I also wanted to mention to all of you considering this surgery, do not, I repeat, I DO NOT advise you to eat bread. I made that mistake, not thinking and took a bite of a cinnamon roll - and thought I was going to meet my maker afterwards. I highly advise to stay FAR, FAR AWAY from bread.

Thanks for listening everyone!!

Post Edited (Marlene) : 10/26/2018 9:58:37 PM (GMT-6)

Marlen,

I’m sorry to hear your going through exactly what I went through. Look, some people have an easier go with surgery and done have it rough. I suggest going back to my first first post and read all of my updates. It will address what your looking for.

Dysphasia kicked my ass.. worse thing ever, I couldnt even swallow water. It does get better as the muscle heals. I think you should get a barium swallow test done. Actually tell your doctor it’s what you want. It’s possible the linx is a bit snug and the swelling is still making it worse. Once I got the dialation done my life got better. Swallowing was easier, food would pass.

Your so fresh out of surgery, hell even 1 month out is tough. Your in for a rough ride but it does get better

I would cancel the trip.. in my opinion from my experience
Chad

I’m glad I could help, unfortunately there was no information out there when I decided to get my surgery since linx was so new. so I figured share my story and hoped it would help

Good luck with surgery. Advise don’t rush foods. Swallow and wait. Minute. Let work it’s way through the linx. I found Taking a few sips of water before each meal as a primer and the get the throat muscles moving really works well

Please keep me informed through this process

Sarah

Warmer drinks vs colder drinks didn’t matter. And you are going to lose more weight. I can guarantee that. You will feel nauseous and bloated for a bit.

Lying down is going to be harder than u think. Keep in mind they are doing four to five incisions all around your stomach cutting straight down through you abdomen wall. Hurts!!! I could lay flat for at least a week or two and my wife had to help me sit up. Mind you I’m 38, into body building and running and in the best shape of my life and I could sit up. This is coded as a major medical procedure on insurance- non minimally invasive as advertised.

But I hope it does go well I hope you can vacation and have no issues. I’m just worried you get to far from your doctor and can’t get the relief you need.