LINX Surgery Week 4 Followup

Hey everyone I'm Harrison. After a failed Stretta procedure in November 2014, I had the LINX surgery performed at University of Southern California in Los Angeles by Dr Lipham four weeks ago (July 8th 2015). He was one of the first doctors in the original clinical trials for LINX and has done over 200 LINX surgeries which is why I came to California from New York to get the LINX done.

It's now four weeks post-op, and I have seen virtually no benefit from the procedure. My heartburn and LPR are still daily problems and the PPI + Tums are still needed at the same dosages as they were prior to surgery to make the symptoms manageable. Several attempts at tapering my PPI dosage down have been unsuccessful as the LPR and heartburn became too problematic again.

I was wondering if there was anyone here who has had the LINX done who saw no benefit after four weeks but later went on to have a successful outcome. This seems unlikely to me as the impression I get from most of what I have read from other LINX patients is that the overwhelming majority of the benefit of the LINX surgery will be observed almost immediately after surgery, but that the side effects of the LINX and the pre-existing damage from reflux can take a few weeks to subside and heal, hence why they ask you to wait 2-3 months to observe the full benefit.

One of the main issues I was expecting to have, which typically comes hand in hand with the LINX device was difficulty swallowing, which actually hasn't been an issue at all until the third week, and even then it's fairly preventable. I remember waking up from surgery and my first sip of water was very hard to get down and it felt like the water was stuck, but from that point on I had basically no issue getting anything down for at least two weeks.

In my third week, I had at least three episodes where I started eating and food would get stuck. I find it tends to be bulky, sticky, and or dry food that causes this; foods like broccoli, chicken, and rice. It also tends to be the first bite of a meal after having not eaten for a long time that carries the most risk for causing the issue, but swallowing some coconut or olive oil before a meal for example would go a long way to preventing it.

I should also mention I have gastroparesis, and sometimes it feels like the reflux is a bit better when my stomach is empty, I'm not sure if stomach fullness causes the device to close less effectively, but either way it makes sense that the more food is in the stomach, the more pressure the LINX has on it to open. Just to be clear though, I have tried sleeping flat post-linx with an empty stomach, and I still wake up with worsened hoarseness and vocal cord inflammation, which basically tells me that the gastroparesis is not the main reason I have reflux.

Just an FYI I'm 28, 6ft 2in tall, and weigh 165lbs.

I have decided to stay in California for now given my dissatisfaction with the surgery, and after telling the nurse I had not improved after 4 weeks, she scheduled me for an esophagram next week, and my hope is that they find the device is improperly positioned or that the length of the LINX string of beads is too long and with one follow-up revision surgery, I could be totally fixed/cured, but the reality is Dr Lipham seems very sharp and with his experience, these possibilities of mistakes on his part seem very unlikely.

Please feel free to ask me any questions. I will go on to document my experience in its entirety over the coming weeks.

Post Edited (Harrison S) : 8/5/2015 6:54:26 PM (GMT-6)

I actually haven't posted in the LINX Facebook group, I didn't know about it, could you perhaps provide me a link?

To me, it feels like if anything I need a tightening of the LINX not a dilating. The trouble I described swallowing is really a non-issue for all intents and purposes as it's happened only three times and only after fasting for hours and then eating something fairly dry and bulky without chewing properly like kale or broccoli and brown rice. It has never happened to me in 28 years pre-linx, but it's rare and preventable enough that it's not even close to a major concern.

The major concern I have is why the LINX is providing almost no barrier to reflux in my case, and my only hypothesis is that either it is not positioned properly or the length was not measured properly, and for that reason it cannot properly close off the esophagus.

My surgeon said if the LINX didn't provide an adequate result, the most likely outcome is that I would require a Nissen. I'm really hoping that is not the case and that there is something he can adjust or fix to make the LINX work properly. I'll find out next week.

I would love to hear from other LINX patients who didn't have a great outcome and hear if things ever got better on their own or if they ever needed a revision surgery, and if not what they ended up doing to tackle their reflux and or LPR.

Thanks!

Thanks for the reply green.orange.

Sorry for my long reply below, but if you read it all, I don't think you will feel I wasted your time.

I actually didn't know that the dysphagia post-LINX typically kicked in at two weeks, my experience makes sense then. Thank you for the input, and any further input from you or LINX patients whose results weren't perfect would be much appreciated as well.

I take the following six products on an ongoing basis:

Protonix 40mg twice daily, Ulcetrol several times a day (a natural supplement similar to TUMS with calcium carbonate and zinc carnosine to help heal irritation from acid as well as any ulcers), Mastic Gum (this supplement is not an antacid but has helped manage my reflux fairly well and I'd recommend it to anyone), DGL (deglycyrrhizinated licorice is also not an antacid, but it has also helped manage my reflux quite a bit), Digest Gold with Probiotics (a great digestive enzyme product that allows for better, quicker, less bloated digestion), and Magnesium Hydroxide (milk of magnesia) before bed because it neutralizes acid quite well at high doses and the magnesium in it has the added bonus of helping you sleep better, not to mention magnesium supplementation is a good idea because PPIs have been shown to cause magnesium deficiency.

I also take a supplement called Lauricidin (Lauric Acid a natural antibiotic from coconut oil that has worked wonders for my GERD) in small doses around twice a week, it helps to kill some of the bacteria in our stomachs which produce acid upon fermentation like lactobacillus which produces lactic acid. If you're worried it might kill off probiotics just supplement with them, but Lauric Acid also kills the bad bacteria and fungi. I think Lauric Acid may be particularly beneficial for me because I have gastroparesis which allows food and bacteria to sit in the stomach longer than usual and ferment which produces acid, and this stagnancy also makes me more vulnerable to SIBO (small intestinal bacterial overgrowth) which causes leaky gut syndrome which leads to a host of potential problems such as autoimmune conditions as well as food allergies.

One problem with any anti-acid medication like Protonix or even Tums is of course that our stomachs can tell that they are not reaching optimal stomach pH for digestion of protein or for killing bad bacteria, and my understanding is that over time the stomach's parietal cells are signaled to pump out more acid to compensate, and in addition, more parietal cells are also generated. I believe this is one reason why PPI treatment doesn't tend to be equally effective over multiple years, and it certainly hasn't been in my case. As you probably have already realized, this is also why we get rebound acid hyper-secretion when we get off PPIs (because our stomachs have upregulated acid production to compensate for the PPIs/antacids in an attempt to re-establish the proper stomach pH, and when we get off the PPI, stomach acid production is too high, and will take time to downregulate itself back to normal again.)

Originally, I was on Omeprazole 20mg once a day, then it was 40mg Pantoprazole/Protonix once a day, and now it's 40mg twice a day which barely makes symptoms manageable when used in conjunction with a number of other lifestyle changes and helpful supplements. My dosage progression demonstrates that PPIs are not a sustainable long-term solution even if they didn't have side effects which they certainly do, and for what it's worth, I've tried upping my PPI dosage past this 40mg twice daily point to no further avail. In fact, I believe the more you up the dosage past the 40mg twice a day point, the worse the tolerance to the medication becomes and the less effect you will get from the medication at any dose.

On a side note, I've been on PPIs for roughly 3 years and during that time, I have developed food allergies to many sources of high levels of protein that I consume (which I never had before such as all nuts, soy, peanuts, eggs, dairy, wheat, lentils, shellfish, sardines, sunflower seeds, sesame seeds, hemp seeds etc) which I had none of prior to starting PPIs.

I think PPIs are definitely far from a long-term fix and should only be used sparingly until a mechanical solution to the reflux can be put into place such as the LINX or a Nissen. I'm almost positive that the PPIs caused me to develop leaky gut from SIBO which was caused by a combination of low stomach acid (which allows lots of bacteria that would previously have been killed by acid to survive and multiply) and gastroparesis/slow stomach movement (which allows bacteria lots of time to multiply, ferment, and produce lactic acid etc) allowing for bacteria to grow to concentrations that would normally not be possible which is what causes SIBO and leaky gut.

If SIBO weren't enough to cause food allergies however (which it is), it's now also been proven that the acid reduction itself from antacids such as PPIs and Maalox/Tums is enough to induce food allergies: "Antacid medication inhibits digestion of dietary proteins and causes food allergy" http://www.ncbi.nlm.nih.gov/pubmed/13679824

Therefore, all antacid users need to be wary of neutralizing too much acid as well as eating too much of one food source of high levels of protein. The more you eat of a particular protein, the more likely you will develop an allergy to that protein especially if on high dose antacids. The reason for this is the more you eat of a particular protein and the lower your stomach acidity is, the more likely lots of that particular whole protein molecule will make it into the blood where it will be presented to the immune system which sees the unrecognized invader protein and responds as if the unknown protein were a harmful pathogen. Undigested whole food protein is not supposed to make it into the blood, and when it does at high levels, either to due to leaky gut/intestinal permeability and or low stomach acidity, it causes an undesirable immune response (an allergy) to that food which will most often last for life.

Sorry for the digression, but I should also mention that I tried the Stretta procedure for my GERD and LPR in November 2014 before I did the LINX in July 2015, and the Stretta was an utter failure, and actually caused gastroparesis and significantly slowed intestinal motility which landed me in the ER with a stomach about to explode (due to damage to the vagus nerve) which has improved minimally over time. If you have moderate to severe reflux, don't waste your time or money on Stretta, most GI doctors think it's a joke even though the company behind Stretta (Mederi Therapeutics) has somehow managed to show fairly good scientific data supporting its effectiveness which is why I signed up for it. I paid $5000 out of pocket and got nothing but serious and permanent problems from Stretta.

Anyway, sorry again for the digression, back to green.orange's question, my current symptoms post-LINX are basically the same as before LINX, vocal cord hoarseness (especially after lying down on incline and even worse flat), mild trouble swallowing due to lump in throat which is not related to the LINX device, heartburn (which has caused LA Grade B esophagitis visible on endoscopy), sour taste in mouth and tooth sensitivity, but all three would be infinitely worse without the PPIs, supplements, and lifestyle changes I've implemented (like sleeping on an incline on my left side, taking the above-mentioned supplements, and avoiding certain things like caffeine, coffee, chocolate, lemon, tomato, etc).

I'm still holding onto hope that I can avoid a Nissen Fundoplication, and that somehow my LINX device could be repositioned or tightened to provide a more functional barrier to reflux, but we will see what the esophagram shows next week.

Has anyone heard of a re-operation or revision surgery of LINX being done before and being successful?

I also made an appointment with a doctor this week to get the Reza Band which is a new FDA-approved device that you wear to bed which helps close off the upper-esophageal sphincter and prevents acid from hitting the vocal cords, and I'm really excited about that. I will report my results here.

Thanks for your interest everyone, and please feel free to leave me your negative/positive experiences with LINX if you have time, also feel free to email me (my email is listed on my healingwell.com profile which is visible by clicking on my nickname Harrison S). I'd be happy to share LINX experiences over the phone or Skype.

All the best to each of you on your journey to health,

Harrison

Post Edited (Harrison S) : 8/5/2015 6:57:18 AM (GMT-6)

Thank you very much for your detailed reply!

Some sources about the usual timing and duration of the LINX related dysphagia:

linxrefluxsurgery.com/about-linx/results said...

The main side effect of the LINX™ procedure is a short period of dysphagia (difficulty swallowing) that tends to occur 2-3 weeks after surgery.

www.toraxmedical.co.uk/files/pdf/3218-1-Rev-1-Artwork-PostOp_Artwork_nobleed.pdf said...

Dysphagia generally peaks 3-8 weeks after implant, is mild, and resolves on its own.

Did you ever try Gaviscon (the Canadian version which does not contain aluminium in contrast to the US version)?