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 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

Well I for one and grateful for this informative thread Chad2322. I am a 60 year old gal in fairly decent shape that has opted to have the Linx done. Met with surgeon yesterday to fins out how all the other test results came out. i apparently have LA Grade C- D esopgitpus, a Hiatal Hernia, which I didn't think to ask how big...some precancerous cells that were ablated during endo., A short LES, whatever that means. He said I am a good candidate for Nissan or Linx. I chose Linx due to less evasiveness..etc. Oh and the manometry test ,what a treat that was....not.

Anyway, now I have to wait to get insurance taken care of and he feels I will have this done late November or early December.

Anyway, I can't take the PPI's or protonics, so I hope it goes well for me. He said this will prevent me from getting esophageal cancer. So thats a plus.

I have had nights this past year of waking up at night from a dead sleep with acid coming up forcefully and vomiting. Of course sleeping with head and chest elevated, no help. Not eating after 5pm, no help. I don't smoke and any alcohol s just not worth it. I really hope this surgery helps.

My question is, can I do protein drink, cottage cheese, yogurt for foods the first week after surgery. What are the best none surgery/fat foods I can have after surgery. I have some time to prepare but was curious. How long before I can do aerobics, plyo after this surgery? I just found this thread so now am going to go back and read it all. You may have already addressed this. Thanks!

Post Edited (Katie7) : 10/4/2018 3:50:43 PM (GMT-6)