SuejayUK Linx on NHS

Wow week ten post op. There was a time I thought I would never enjoy food again but...... I have enjoyed gammon and eggs and chips and beans and chocolate fudge cake and chocolate ice cream no less..... so not bad going for someone who was restricted to white fish and mash potato at one point. Only occasionally though...honest. lol
I have no pain re the device. I only know it is there if I eat too quickly when it kind of twinges a bit so that reminds me to take it slowly and chew chew chew chew.
had home made shepherds pie today with home grown cabbage and cauliflower and I did fine with that...pre op I would taste and bring that back for hours.....nothing today just enjoyed it.
Was up twice last night with the heart pounding stomache throbbing and sore throat...only mild but wakes me up.............
still sticking to gluten free, dairy free and avoiding salad and fatty fried stuff and feeling a lot better for all these things.
I am trying a slice of real lemon in my morning ginger tea and I think that is doing my tum good plus I use the Fruitin fibre barrier chewy tabs twice a day, which is settling the soreness in my tum and lanso at lunchtime 30 mg hour before food.
Hoping to settle things down enough to start reducing the PPI dosage......we shall see....still happy with the Linx even though I have some symptoms still. I xuspect i ahve some food intolerances going on and need to give everything time to settle down. Still feel a little bloated at times whihc is something I arely had before but am told this will settle..

Hi Tracy, I think you may be right. What is carafate? Where can I get it from?

Thanks Rita I am going to discuss all this with my consultant and GP. I am feeling a little better using the Fruitin which works on the same principal of putting a barrier on the stomache. I have fibromyalgia and tend to have bad reactions to various meds...hopefully Antepsin wont be one of them. Thanks again. Sue

Hi grover cat, good luck with all your tests. Hope they all come back good to go for the Linx. I have been away to North Wales for a week hence no PC to post with.

I am doing well. Much better recently as my stomache is much less sore. I am 12 weeks post Linx now and I do not know it is there. I can eat and drink with no dysphasia at all and am beginning to enjoy food again. I am being cautious with the diet, sticking with gluten free and dairy free still , plus no chocolates as they set off my palpatations big time and still on the herbal teas, no caffiene as that sets off the stomache irritations, well it did before, not had coffee for over two years now. Not missing any of it as missing it out is making me feel better. Gluten free stuff is much better than it used to be so still have sandwiches, toast and bake with GF flour. I reckon I have food intolerances because of having a sore stomache for so long, probably due to using anti inflammatories for years, but am getting on top of them and feeling better.
I am sleeping better without reflux at night. I think the stomache soreness is settling down. I have been taking a natural medication called fruitin which puts a natural fruit fibre barrier on the stomache lining. Since starting this I have definately felt better, much less stomache throbbing and less sore too. I have successfully cut back from 45 to 30 PPI daily . Will leave everthing to settle for a while before cutting back again. If I have to live like I am now I can, it is sooooo much better than before the LINX. i really hope the Linx works out for you.

Hi have not been on here for a while... been studying for an exam but I have much to report. Had quite a bad time over Xmas 2013 with a resurgence of reflux which manifests for me mainly at night and as a sore throat, discomfort in chest/cough and stomache and heart palps and nausea. I had been trying to get off the PPI and think it was the dreaded rebound. Most disheartening as I felt the linx was working well till I tried to stop the PPI lansoprazole. My GP assisted by giving me Ranitadine to substitute but that set my heart palps off big time and made me sick as a dog!!!!!. So looking like death itself I went back to my GP who said do not think you are ready to come off the PPIs yet so back again on full dose. Fine, could eat and drink and sleep in a bed ( I slept in a chair for 2 years!!) just could not get off the PPI.
I looked on the net and found an interesting article on pepsin as the culprit for reflux, poss plays a part in LPR as there is apparently such a thing as aerosol pepsin which is a vapour that causes reflux and effects the oesophagus and throat. Worse still this pepsin actually penetrates your very cells and sort of sits there lurking and at the smallest sign of reflux all this stuff comes out again and gives you full blown reflux again despite Linx/fundo etc which may be why we get re bound with a vengeance after coming off the acid suppressents. Linx is a 2 way valve and if a bit of aeorosol pepsin is getting through there and triggering the hidden reflux in the cells, stored up pre Linx and pre PPIs then it is no wonder we get rebound. Anyways may be I am not explaining it well , maybe I have read it all wrong and misunderstood,and may be technically incorrect but it made sense to me.
Armed with this I decided to sit out the rebound and ignore the palps. I checked with a heart specialist that the palps were harmless ( I have lots apparently...uncomfortable but harmless I am told) and went through about six - 8 weeks of basic misery but I was ready and armed with bottles of gaviscon at night...and as my GP said, take a big swig!!! Eventually things calmed down and I reduced and reduced the lanso and then held my breath and stopped altogether. Another few iffy weeks and then nothing.......Linx great, me great and back on Tea and coffee (de caf and not too often)and fewer palps than before. So it is whoopee time for me at 12 months on and I went for my 12 month check up with my surgeon who noted no reflux, no meds needed now and no night time major reflux as before. I cannot say how pleased I am. It has not been an easy 12 months but it has all been worth it. My surgeon does not think this will change.BUt , having got my munching mode back on I have put weight on so the job now is to lose it otherwise the pressure in my abdomen may overwhelm the linx which is only designed for so much. I can report sadly that the linx copes well with lettuce lol LOts of lettuce .....so hopefully I am fixed. So there is hope for all you new Linx folks and for everyone please try the Linx before going for the NIssen Fundo...I am so so glad I did. By the way I had 6cm hernia fixed at the same time as my linx op...and that has been fine too. Lucky me and I sincerely hope lucky you too for all of you. Take care ......oh and thanks Torax for inventing the Linx and thanks to my surgeon for fitting it.

Hi Gerdproblems
as regards the Linx I am doing really really well. It has taken 12 months though to get to the stage where I am off PPI s altogether with some ups and downs.....mainly ditching the PPIs
I would recommend the Linx for anyone with similar probs to mine. I had silent reflux with my main symptoms being nausea, sore throat, croaky voice ,cough, belching after meals ( yuk ) foul mouth, regurgitation lying flat and feeling generally awful 24/7 I also had the strange symptom of getting heart palpatations whenever I got reflux. Night times were a night mare so I slept in a chair for about two years. I had oesophageal spasm too which was excruciating. I made changes to my diet cutting out all tea , coffee, alcohol and fizzy drinks. I found lemon and ginger tea helpful for me and steamed fish and mash potato. All things bland. No dairy, no gluten etc etc

Because I also had fibromyalgia I had a hard time getting surgeons s to believe I had a problem that was not " all in my head" but eventually saw a Mr D Nehra under the NHS who is licensed to do the Linx operation in UK. I also had to wait a while as I had 3cm hernia on a scan which actually turned out to be a 6 cm hernia and Torax gave the go ahead for folks with hernias in 2013. Mr Nehra fixed everything and did a good job of my surgery and now 15 months on I would say I am back to normal eating etc. I still take care not to eat too fast and I avoid overindulging and chew things more but can enjoy most foods as normal now...hence I have gained weight which I need to lose. I do not know the device is there.

I have written up my experiences on this blog but if you have any specific questions I am happy to answer them.

I was offered the esophyx in 2012 but that would have been a disaster for me so glad I did not go for that and I had a friend who had had a nissen which had just made him much worse so did not want that. I researched the linx myself via the net and discussed it with my GP who referred me to a Mr Nehra as my then surgeon who shall remain nameless was a waste of time. I live in Wakefield England but had the op on the NHS in Epsom surrey. I am part of a NICE study to see if it is a good thing to roll out generally in a few years through out the NHS.
I had test beforehand that showed no damage to oesophagus or throat, I had a demeester score of 45 on a 24 hr PH test proving serious reflux all through the day and night though the medic said I must be somatising because I have fibro which is not so as both fibro and gerd are genuine physical problems and my swallow test showed the hiatus hernia so that could not be argued with as it is a classic physical cause of gerd.
I think the blurb for the op is a little misleading as you do need time to adjust to the device, get over the op and allow your long suffering stomach to get back to normal...they kind of give this impression that it happens immediately...it doesn`t.
I was told to come off PPIs right away but that was a mistake and I had to go back on them all be it at a lower dosage than pre op, for quite some time. The first three moths you must really look after yourself, chew all your food really well, eat small meals and take fluids with everything. I ate small amounts every couple of hours..they do tell you all this and stick to what makes your tummy happy. I also supported mine with apple cider vinegar when trying to reduce ppi s and with fruitin which supports your stomach lining and lots of ginger and lemon tea.
Very occasionally at night I will get a bit of reflux as in a sore throat dry mouth or fast heart rate so I just take a bit of gaviscon and it is fine. It is getting less and less the longer I am off the PPI s.
When I went for my years check up in Epsom Mr Nehra said some folks had had only 30% improvement , some 60% and some like me 95% . My only problem is a bit of bloating every now and again , I can belch and I can get a bit windy ( sorry) but boy compared to the misery I was in , it is a miracle. Hope that helps. I don't know what your symptoms are, and I know that all ops are daunting but go for the Linx first as you can have a fundo afterwards if you need to. Hope all that helps.
Today I had a Mc Donalds ( do not do this often) big tasty meal, orange juice and ice cream......not a whisper of reflux. I can also eat salad now with raw onions...no problems. I am back on coffee just recently but not strong. I don't drink alcohol really anyway. OK hope you have success. Do let me know. Sue

Hi Sue

Was really interesting reading how you came off PPI's and the effect on your stomach, I'm somewhat trapped on them at the moment because at the mere hint of acid I get nausea and stomach pain and I dont think I could handle braving it for 6-8 weeks to see if it died down.

Sorry to hear you're having trouble again, your stomach sounds just like mine, fine one day having burger and ice cream, and the next day BAM having something like an egg sandwich sets it off. I've tried a variety of supplements for stomach upset, the best I've come across are DGL and PepzinGI, might be worth you trying them out.

Are you on NSAIDS? they reduce your stomachs self-protection which is why they are a common problem for stomach complaints, hopefully the DGL will offset that some as it stimulates your stomach to produce lining.

Well I have a conundrum for you all..... I have tried going back on PPIs..no go ...make me feel sick as a dog now..even gaviscon is disagreeable now....so as still getting tachcardia and reflux following food or in the middle of the night when my reflux manifests....I tried slippery elm chewable tabs . Instant improvement. My heart rate literally halved and my resting heart rate is much lower too and I can eat again...though being very very careful. Quite amazing
Over the last four years since getting reflux disease, I have had tachycardia episodes. Also my resting heart rate was in the 80's 84bpm ish. The reflux would push this up to a pounding 126bpm.....sinus tachycardia..or 110 bpm..sometimes for hours and hours.Pre Linx anti reflux surgery this would go higher to 165bpm and gear down in stages..I would feel faint and very exhausted after these events...that was supra ventricular tachycardia apparently but that has disappeared since surgery. The sinus tachycardia has disappeared since taking slippery elm and so have all my ectopics apart from the odd one now and again. My resting heart rate is in the 60's ie bp 110/70 heart rate 64. which is perfect.
A few weeks ago I ate a baked potato which set my heart off around 130 bpm and I was in A &E overnight with a slightly off heart trace. Now I have a oerfect resting rate and even when I get reflux, slightly, as I can hardly feel it now, the heart gets no higher than around 80.
What is going on? Any one understand this as I do not? Four years of being shouted at by consultants who were annoyed because I would not accept anxiety as the cause of the palps and now they all disappear after taking slippery elm for a few days !!! Anyone out there who can shed any light on this please respond. Oh and Happy Christmas all!!!!!

Hi Yash...sorry to hear you are suffering with LPR. I understand what you are going through. It is hard and quite frightening when you feel you have no control over the symptoms.
I am doing a lot better at the moment. I am using herbal remedies, diet changes alongside the LINX supporting my lower oesophageal sphincter and this is settling things down for me very well. But to get to this stage has taken a LOT of time and work and input from friends and experts over 4 years. There is no quick fix.
My advice would be to read, read, read and get to know as much as you can about LPR/GERD. There is an excellent website run by Tom Demeester and his colleagues, all experts on all types of acid reflux/LPR problems. They will also answer questions too and there will be people on there like yourself to relate to. The site is called REFLUX MD and is a good place to start. Then, armed with a little knowledge, discuss your options with you doctor and take it from there.
Re herbal remedies, I got a lot of info for them off this site.....I put a search in for say "getting off PPI" or "slippery elm" or "LPR" and allsorts comes up. Read read read again lol!! But take care as we are all different and you need to find a solution that is right for you.
Also there was a chap on here called Justpassingthrough or JPT who was very knowleadgable about LPR and also has had the LINX so look his stuff up in The Linx Club on here too. He is also on Facebook too.
You are not alone Yash...... lots of folks will support you on here so give what I have said a go and start on your road to improvement and recovery. Good luck. I will be on here so will keep an eye open for you. Take care.

Hi all, Still struggling with my reflux symptoms. I have eliminated my heart palpitations via the use of slippery elm herbal chewable tabs and occasional Gaviscon. Re reflux ...Pretty much OK daytime if I am v. careful what I eat but get sore throat and hoarseness in the evening when I do not eat and in the very early mornings too. I do not get heartburn but my tum feels tight and big(lol) and my airways are irritated too as if I have a cold and my throat is sore on swallowing. I have improved since xmas but still not right. Determined to get this sorted and NOT keen on going back on strong PPIs.
I do not know if this appears as part of the Linx club but all you linx folks out there, anyone any suggestions?

Hi all, still got the dreaded reflux..particularly at night....but NOT on PPIs as they make me feel sick and ill but still taking herbal remedies which help but do not cure things. My GP has given me lots of Gaviscon which I take if I get heart palps due to reflux otherwise sticking with slippery elm/gastrozyme/apple cider vinegar and modified diet. The ACV really helps. Also I have lost 20lbs weight but made it has no difference.

I suspect I may have low stomache acid which apparently increases internal abdominal pressure which I believe can overcome the Linx which is designed to withstand only so much before opening.

Either that or something has gone wrong with the LINX itself or my hernia is back.....but no one is looking at either of those and as my surgeon is out of the country I am feeling a bit abandoned. To be fair he did pass me over to a colleague 200 miles away who suggested redoing tests but as they were a waste of time last time and I am afraid of non Linx informed folks doing these tests and doing more damage I have not pushed for them.

I am also afraid because my next option is a fundoplication if the Linx has failed I do not want that so I am trying to fix things myself and manage than go for that. All surgeons and doctors want to do is increase PPI dosage which just makes me worse so really I am out of options.

It concerns me I am having reflux episodes every night but what can I do? other folks seem to have surgeons that give them much more info than mine and do regular follow ups but I just travel 200 miles once a year...so in July I will see someone who probably is not a linx surgeon anyway. I have to say I am unimpressed totally with the follow up and help if things go wrong in this NICE study I am supposed to be part of. I am literally on my own and have been from start to finish. No info no help line no nothing...just my good old GP doing his best.

To answer your question, I think my surgeon must have finished doing Linx implants for the present as he is abroad. Torax will be able to tell you who is doing them in the UK as only certain surgeons are licensed/trained to do them, You could email them for info.
Hope that helps.
Meanwhile I am still working on losing weight and fixing myself...wish me luck!!!