Acid Reflux Linx Procedure

For the best part of two decades, I have had daily acid reflux. That’s all my adult life. In this post I will tell a personal journey that I hope will help inform others who may be going through something similar.

Symptoms

Acid! The first symptom to present itself was heartburn and sticky clear fluid in my mouth and throat. It wasn’t long before my doctor prescribed esomeprazole proton pump inhibitor (ppi) tablets which I took as and when needed. They controlled the symptoms without any side effects. Result!

Not quite. I foolishly didn’t modify my diet, I just carried on and it wasn’t long before I needed the tablets every day. Still, symptoms were under control and there weren’t any side effects right?

Side Effects

Wrong. Side effect time. Heart palpitations. Lots of heart palpitations. To the point where I had to go to A&E in the middle of the night to properly get checked out. The outcome after ECG, monitoring and future consultant meetings: It’s the ppi tablets. They didn’t think it was anything serious and said it might be more important to stay on the ppi’s to keep the acid under control than remove them and cure the palpitations.

I switched ppi tablets to lansoprazole with no change. Then to omeprazole and it wasn’t too long before the palpitations stopped. However, I then developed some other symptoms that I still have now:

Nerve pain. I initially thought it was acid and it took a while to get to the bottom of —uncontrolled, this was worse than any acid I’d ever had. debilitating. Eventually, I was prescribed a low dose of amitriptyline and, as if by magic, within 24 I was feeling significantly better. A week later the nerve pain had faded into the background. No one knows if the root cause was the acid itself or the ppi tablets to control the acid production. What I do know is I’m still on the amitriptyline now.

Fast forward a year or so and I started to get increasingly frequent stomach cramps and looser and more urgent bowel movements. I eventually switched ppi tablets again and luckily pantoprazole helped the cramps and urgent-ness for several years. But then they reemerged, snowballing to the point where, once again, these symptoms became worse than the acid itself.

How do I know it was the tablets? Well during the early phase of cramps etc I had a doctor who wanted me off the ppi tablets. I tried this repeatedly but couldn’t get off them switching to ranitidine supplemented by Gaviscon (just as well with what has happened with ranitidine). I also had 2 gastroscopies which needed me to come off the ppi’s. In all these situations, my symptoms subsided (apart from the increasing acid!).

The gastroscopies both showed I had a hiatus hernia (part of your stomach sitting in your chest, not down where it should be), the treatment for which is ppi tablets! In other words, I was facing a losing battle to try and come off the tablets and control my acid reflux.

I’d done a fair amount of research and became aware of rabeprazole, the newest and most potent ppi. Studies showed there were less of the cramping etc symptoms on this than other ppi’s. At the same time, my acid levels started to get worse as well. It felt like last-chance-saloon time and I didn’t have anything to lose so switched.

Bad idea. My cramps etc almost instantly got significantly better. But on the flip side, the crippling nerve pain was back with a vengeance, even though I was still taking the same dose of amitriptyline. Everything seemed to fit — the ppi tablets were the root cause of much if not all of my symptoms. I was now left with a straight choice of increasing stomach cramps and bowel problems (that were beginning to interfere with my ability to get through the working day) or crippling nerve pain. Great.

Surgery

Surgery was always an option. But it wasn’t. I’d read extensively about the clever but archaic Nissen fundoplication surgery very early on. It sounded like it was very successful in controlling symptoms of acid but gave you a serious set of side effects. Namely swallowing problems, an inability to burp or be sick and general problems not that dissimilar to the ones described above from leaving the stomach. Needless to say, I had already had enough experience of those symptoms to go anywhere near that surgery, keyhole or not.

About a decade ago I had also read about promising procedures that were being trialled. I formed a gameplan at this time to try and outlast the symptoms I had until one of these procedures became a serious and proven option. One in particular caught my eye and seemed like it would be right for me due to the hiatus hernia: the Linx Procedure. Ten years ago it was only in trials though.

Fast forward a decade and with some more researching, it was clear that of the trialled procedures, Linx seemed the best balance between safety, effectiveness in stopping acid, with least potential side effects. It is now an emerging procedure, approved in the UK but currently only carried out in a few hospitals by even fewer surgeons. It was clear that if this was the direction I was going in, I had to find a surgeon who had a decent level of experience. I didn’t want to be a medical guinea pig, I wanted to get my quality of life back.

Linx Procedure

What is the Linx procedure? It’s clever, that’s what. You remember those candy bracelets on an elastic string? Replace the string with a titanium ring and replace the candy with titanium magnetic beads and you have the linx device (pretty much).

You eat something. Your oesophagus muscles squeeze the food down to the lower esophageal sphincter (LES) muscles that open and close to let food into your stomach (the one that is likely very weak if you have a hiatus hernia). This is where the Linx sits. The magnets open as the food comes through it but then close afterwards to stop acid coming back up.

If your stomach is strong enough (and let's face it, if you’re reading this, it probably isn’t) the procedure of placing the device in situ can actually be watched on Youtube. It’s a relatively-short keyhole operation where the surgeon first fixes any hiatus hernia, then places the device around the LES and adjusts it to the exact right diameter. From the research I’ve read, this seems to be absolutely paramount. Too tight and you get problems, too loose and the acid isn’t as effectively stopped. The research shows it’s better to be conservative and if in doubt, go a little too loose. In simple terms, the device does not ‘grip tight’ around your oesophegus.

As with any operation, there are potential side effects. The big one for Linx is swallowing difficulties post-op. Other ones include increased bloating and less of an ability to belch — these are all to a significantly lesser extent than those likely to be produced by the Nissan fundoplication. Far more preferable!

My Linx Journey

All this takes us up to August 2020, where I spoke to Paul Goldsmith for the first time, a gastroenterologist who works at the Spire, Manchester and carries out the Linx procedure. After speaking with Mr Goldsmith, it was clear he would only recommend and carry out surgery if it was likely to be effective for me. I was sent for an oesophagal manometry study which was pretty cool tech, to be honest. A technician placed a thin tube down my nose all the way to the LES and then asked me to periodically swallow sips of water in various positions as well as a biscuit. The tube had sensors all the way along and delivered a very detailed set of results, outlining the strength of my oesophageal muscles, including my LES. These were then interpreted by the technician and reported back to my consultant. Luckily for me, although my swallowing wasn’t super strong, it was deemed absolutely fine for acid reflux surgery and built up the picture of what was going on.

I was then sent for a combined gastroscopy and Bravo capsule to measure the PH that came above my stomach (ie the acid that I was in danger of if I stopped ppi tablets). The Bravo is more cool tech. Traditionally, PH is measured by putting a tube down your nose to just above your stomach for 24/48 hours. I’ve had it before. It is not awful but not a pleasant way to spend 48 hours. The Bravo is a capsule that is clipped to the same desired place and sends a signal wirelessly to a small device you wear whilst the Bravo is operational. Whilst it was a bit sore when swallowing (as food passed it), it was nothing compared to the accidentally yanking of the tube attached to your nose in a standard PH test! Mr Goldsmith described my levels of acid as ‘impressive’, which whilst sounding like an achievement, I rightly took to mean ‘significant’. The picture was building clearer and another box ticked for possible effectiveness of reflux surgery.

The next stage was discussing options. I never felt pushed into anything and I genuinely felt the process was a collaboration between a very knowledgable and forward-thinking consultant and the person who knows what has been happening to me more than anyone else. Me. The two options now under consideration were the Linx procedure and a partial Nissan fundoplication. I wasn’t aware you could do it partially and after more research, it certainly seems more preferable to the full fundoplication. Less side effects, almost the same effectiveness. Still a long recovery time. I considered it for a while and then ditched it for one additional main reason. The Linx procedure is reversible. There were two massive, massive reasons why this crucial for me:

• Whilst it was very likely the ppi tablets were causing the cramps etc (ie they were side effects), it was also possible this was a coincidence or non-reversible (ie it wouldn’t get better once off the ppi tablets). If the procedure made these symptoms worse rather than better, having the option to remove the Linx could be an important option.
• Control of the acid. I viewed the Linx as a more conservative option. With the partial Nissan, as with the full, if you have that surgery you can’t have the Linx later. However, if you have the Linx, you can have that removed and potentially have the Nissan later.

Mr Golsmith was of a similar view for my particular case — the last thing you want is the cure to replace one set of problems with another. So that was it. Decision made.

Before I talk about my post-surgery experience, it’s important to say I’ve had a few operations before. I don’t have a particularly good pain threshold (as my wife will confirm) and I don’t go into any lightly. Here’s a quick list of mine that might help place the Linx for people who are worried about going through with the procedure:

• Wisdom Teeth — barely surgery. Not fun for a few days after but fine
• Groin hernia — Nothing major. Couple of days out of action but was only really a problem a couple of weeks later when staples removed due to length of the incision. Cleared up quick enough. Get a few twinges every now and again from there
• Scoliosis / Harrington rod — absolutely horrific. 6 months post op spent mainly lying flat in bed. Regular pain from 1 incision for a good 5–10 years afterwards

The good news is the Linx is nothing like the Harrington rod! It’s most close to the groin hernia. Because the Linx was keyhole, the incisions closed really quickly and I’ve hardly had any discomfort from the actual wounds. What I would say is because it's your digestive system you are messing with, it is to be expected you’re going to get a few more temporary digestive issues as your body recovers post-surgery.

October 20th. The day of my surgery. The Spire Manchester were great — I felt at ease (as much as possible anyway, especially in the middle of a pandemic!). I went down late morning, came back from surgery and spent the afternoon trying not to be sick. I wasn’t in much pain at all and have always felt or been sick after an operation so it wasn’t surprising. I managed not to be though. If I had lived nearer I would probably have been able to go home the same day. I have to say, having the night and next morning in hospital was probably the right thing to do and when I did leave at lunchtime on the 21st, I felt pretty good. Yes Iwas in a bit of pain but I was just on paracetamol that day (I wanted off the codeine as soon as possible). I didn’t have (or need) codeine again.

The first 3 days or so back home were the worst but to be honest they weren’t that bad. I was up and about and I was eating and drinking. What I did have was the expected symptoms of any post-op: bloating, not much going in in the bowels, a few cramps. A few days later things had improved as the effects of the operation wore off although the bloating remained.

It’s absolutely critical if you have Linx surgery that you eat regularly after the operation and chew everything really thoroughly. You need to eat because that is the ‘physio’ for your body to be left with no nasty long-term side effects (such as swallowing problems). You need to chew properly because otherwise you are at risk of rather painful oesophagal spasms as your LES area can’t cope with the changes it’s had at first.

So what was my experience? I did everything textbook, eating small amounts regularly, taking time between bites. I probably pushed what types of food I ate a little too quickly and ended up with my one and only truly horrific spasm on about day 4. An hour stood over a sink eventually being sick once (at least I could be) and the muscles eventually relaxing. It was definitely set off by a few swallows of food that were in too close a succession. I was super careful after that for a while but didn’t stop eating solid foods, I just gave myself a little more time between swallows and stayed away from particularly hard to chew foods for a couple of weeks.

Week 2 post-op was decent. It’s supposed to be a ‘honeymoon period’ although I wouldn’t say it was that great! I was making steady improvements; everything felt like it was repairing and most of the initial symptoms had now disappeared, leaving only bloating.

I went back to work just under 3 weeks after the operation. I probably could have managed a couple of days before but didn’t want to push it. It was definitely the right decision for my body as I was exhausted each day for a couple of weeks being back. All to be expected though as my body recovered.

After about 4 weeks I started to notice an increase in mini spasms/discomfort when swallowing. This was expected as it is part of the body’s natural repairing phase to create scar tissue around the Linx. In my laymen’s terms, it seems it’s where food gets pushed down to your LES and then your muscles work overtime to open the Linx. So if you have a gap between swallowing, you learn to sense the Linx being opened and food going down, then you can have your next swallow. It’s where this backs-up that you cause yourself issues! This is supposed to hit a peak at about 6 weeks and ease off after a couple of months until it goes. In my experience, this was absolutely bang-on. Week 6 and 7 were the most challenging, nothing major though as I was pretty used to what my oesophagus could tolerate (it’s all down to the chewing and speed of eating). In week 8 I already noticed a significant lessening in discomfort.

It’s really important to say that by about week 4 or 5 I was eating pretty much any type of food. Randomly, chicken always gives me the most difficulties.

The other side of swallowing problems is ‘getting food stuck’ as it goes down. Again, this is an expected side effect of surgery that should go over time. To this day, the only time I had really difficulties was the evening on the day of the operation (dry peas). I just stayed as calm as possible and drank some water, which sorted it. Since then, the only time it’s even been remotely noticeable is if I’m eating something particularly dry (like a Nature Valley bar) and even then, a second swallow or a sip of water has flushed it away each time. Dry rice? Not a problem. Peanuts? Not a problem. Popcorn? Not a problem.

I’m now nearly 9 weeks post-op and the swallowing issues are continuing to subside. The bloating eased a lot by week 6. Peppermint tea/capsules really helped get to that point. I tend to eat slightly smaller meals, nothing that ruins family meal times though. I have started light exercise again without issue and generally, the operation side of things has been really positive. Now for the impact on the reflux…

Quite simply, it has been exceptional. I couldn’t have asked for a more impressive result. After having nearly two decades of reflux, I was told after the operation to stop taking my ppi tablets.

It was like someone turned off a tap. I haven’t had proper reflux since the operation. The only times I have had a gnawing in my stomach has been a couple of evenings following peppermint tablets to ease the bloating. It hasn’t even needed a Gaviscon or left my stomach.

I have to say I was a little sceptical of the potential success before the operation and would have settled for needing regular Gaviscon whilst almost expecting to still need a lower dose ppi. But no acid. At all. Come on. That’s absolutely incredible.

I did get a couple of side effects from turning that ppi tap off cold-turkey after so long. Namely:

• Strong (not fast) heartbeats for a couple of weeks at night
• Very weird dreams

Both of these started about week 2 or 3 and had gone by week 6. Weird but not a big issue at all. Which brings me to my original symptoms of cramps and urgent-bowel movements…

Unfortunately, these remained after the operation. Does it mean the ppi’s weren’t causing it? Possibly. Although I have a hunch what has happened is the ppi’s have changed my body’s digestion so that even off them, the same digestion system remains. After speaking with Mr Goldsmith, I carried out a breath test for SIBO, which came back positive. I had a course of Rifaxmin which seemed to make no difference. It’s the only disappointing part about the whole experience that these symptoms remain but that has nothing to do with the Linx surgery which has been hugely successful in controlling the reflux without adding more side effects. I’d go as far as saying, if it was developed enough a decade ago to have the operation then, I strongly believe the cramps etc wouldn’t be there anymore. The second decade of ppi’s was something my body just couldn’t tolerate.

In conclusion, I am extremely happy to be completely acid free. I am still hopeful I can get the other symptoms under control — something I couldn’t do if I was still on ppi tablets. The operation is not to be taken lightly but it also isn’t something to avoid. It offers a very real and very much less invasive option to full or partial Nissan fundoplication. Just read around it and most importantly, find yourself an experienced consultant, as I was lucky enough to do.