Linx problems (if you have had or are having problems with linx let me know)

Hi. I had linx installed early 2013 after years of reflux, the last 2 years being awful. I waited for linx to become available as i didn't want nissen.
The surgery went well and for the first 3 months i was 100%.I was so careful not to lift anything more than 10kg for those 3 months as i didn't want to damage my small hernia repair.
At 14 weeks i moved several items that weighed 30kg.what a mistake! That night all my favourite symptoms were back, heartburn, coughing, throught clearing, sore throat and neck.
I have never been the same since and have suffered recurrent problems. I have had numerous tests done since then but nothing was found to be wrong.
I lived with it as there was generally a 90% improvement.
Over the last 2 months i have started experiencing throat clearing, cough, sore chest etc which has got worse and worse. To the point were it is almost as bad as pre op. I have seen my surgeon again and i now have to wait for ever for all the tests (ph, endoscopy etc) to find out what it wrong.
My surgeon says if the linx isn't working he'll remove it and do nissen on me, which is the last thing i want!
What i want to know is what has gone wrong and can it be fixed? I personally think i damaged my hernia repair and the linx is sitting off set, allowing reflux through. Since my 1st heavy lifting and have without thinking lifted heavy things on 2 more occasions each time the reflux symptoms get worse.
Hernia????

Hi Pat Tall. Thanks for your reply.
I have just ordered myself a pepsin test to double check that it is reflux. I will have to wait a while for the tests as i am at the mercy of the nhs.
I have read a few posts about linx and hernias so i am hoping that is what it is. I am very reluctant to have nf as i never wanted it in the first place. My Surgeon, who has done over 1000s nissens and about 35 linx is determined to find out what the problem is as i am his only linx patients who has had problems. There has been talk of a dialation in the early days but my 'problem' keeps coming and going.

Justpassingthrough by any chance?

I'd love to have a chat with whoever it was who had the same problem. I'll contact JPT. Thanks

Hi suejayuk, thanks for your reply. As i write this i have terrible heartburn and am wheezing away.
I have just done a peptest and will be posting today. My Surgeon is alway 'away' un'til September (perhaps we have the same one?) but has arranged for me to have all the 'tests' again (oh joy). My doctor is desperate to get me back on the ppis, which is did for a week but they just seemed to make things worse. So i'm making do with draught gaviscon at the moment.
I'll read your story and get back to you soon. Are you in any of the Facebook linx groups?

Hi linxbud yes it is very disheartening after experiencing a reflux free life for a while to then have problems again. I had the Linx on the NHS as my private health plan refused to pay for it insisting on a Nissen instead, this after sending me to two less than great surgeons who had me on a string for 18 months promising the operation they could not provide, In the end my very helpful GP accepted my research on the linx and I was referred to a Mr D Nehra who did an excellent job of the surgery on the NHS in Epsom General as part of a NICE study. I am in Yorkshire so it was a bit of a trek. He is on sabbatical till October so I have been referred to someone else for the time being but no tests arranged as yet as My GP keeps prescribing different PPI meds which like you seem to make me worse now. After a few days i get really sick with them.
At present I am using slippery elm after meals and before bed plus gaviscon if I get throat irritaion etc. So far i have reduced the symptoms a lot...the slippery elm chewable tabs from Holland and Barrett work really well for me. My reflux caused me to have heart palpitations which rather added to the problem but the slippery elm has got rid of them too thank goodness as does the gaviscon so a definite connection between reflux and my tachycardias.
Other than losing a lot of weight, I am at a loss as to what to do. The status quo line of treatment is PPIs, then tests and more ops if the PPis fail. not a happy prospect so have started seeing a naturopath for diet advice and weight loss and hope that that helps.
I am worse at night and dread going off to bed but things are not as bad as before the op so that is something positive. I am almost 60 and have put some weight on since the op which I am told can defeat the Linx as it increases abdominal pressure forcing it open or it may be a return of my hernia which was a big one apparently. On my first endoscopy i was told there was no hernia but apparently the scope can push it back down so you just don't see it. The PH test gave me a PH score of 45 pre op. Do not really want another of those but I am interested in the pepsin test. If we are experiencing aerosol pepsin reflux then no amount of PPis will fix it as they suppress acid not pepsin. I think something calle pepcid may be of help. I am on facebook. Which facebook ones re gerd do you follow?

Just got my Peptest results, i have Moderate pepsin reflux so back to square one for me. Just have to wait for all the tests to be done again to find out what has gone wrong. Out of all the linx my surgeon has done i'm the only one that has gone wrong.

Linxbud. Please continue to let us know what the outcome is. Very interested! It has been my understanding that pepsin is aerosolized like a spray effect therefore Linx wouldn't hold it back. Seems like diaphragm has something to do with it. Have you had a chance to read JPT journey and the things that helped him with beating his pepsin.

I did see your previous posts. Wish you well. Pat

Seems like USA docs don't accept Pepsin test results or don't put faith in them.

As far as i know i don't have sleep apnea, i have been tested for it. All i can do is wait wait wait for tests to be done. My esophagus feels like someones been at it with a cheese grater. Ppis and h2 blockers don't seem to be doing any thing. Have read jpt will give what he suggests a try.

Can you share information on those findings of post Linx implant hernia repairs and at 13 months too. Wow!

Hi all, been off here for a while. I am still experiencing problems post linx with reflux. Not as bad as before the op as I had regurgitation regularly then and could taste my food round the clock repeating all the time...that thankfully has gone but I have the LPR reflux particularly at night....like Linx man in the early hours. It is much milder than it was before Christmas but still irritatingly there.
To control my symptoms I have been using DGL licourice before breakfast, apple cider vinegar with meals and slippery elm after meals. This takes care of things during the day unless i splurge and eat too large a meal. I have also cut out gluten as much as poss which also helps a lot.
I also use something called sano gastril which is a lozenge to suck when you feel the reflux coming on. This works similar to gaviscon on site in the stomach but it does not cause rebound a couple of hours later as it does not mess up the PH balance of your stomach just settles and soothes the reflux. Doing ok as long as I am careful and still searching for that final fix back to my four month reflux free state...mind you I have done well today as had strawberries for breakfast , a slice of fruit GF toast and hot choc an hour later, a trip to coffee shop and a cheese toastie. lemon cake and hot choccy again!!! oh and gluten free fish and chips for tea......I probably deserve reflux after that lot haha but hubby and I were having a day out and things just went that way...it is soo cold here. Any ways lets see if I survive the night lol.

I have a theory that we may be battling low stomache acid not too much acid. Reflux is essentially acid in the wrong place or as in our case pepsin aerosol reflux in the wrong place which the Linx cannot be expected to fix really. My theory is that I had the Linx, came off PPis, struggled with rebound which is caused by overproduction of acid then when I had the magical four months this was when my tum was producing a perfect amount of acid which as my stomache adjusted over time back to 'normal' became low acid which kicked off the reflux again by encouraging inappropriate LES opening especially at night when the stomache is empty Just a theory but in my case supported by the fact that I feel better with the acidic apple cider vinegar ( chewy tabs) and worse on acid reducing PPI's. SO dont know what you think about that but makes sense to me..

I am 57 yrs old, severe GERD, Barretts and LPR. The LPR is the worse now and I need my voice for entertainment and police job. I have a consult with a Linx surgeon Thurs but have a HH and after reading all this, I am really having second thoughts. FDA has now approved the device but all does not seem as great as all the videos I have seen.

Giani

Thanks Linxbud. I have suffered since my teen years. I am also a runner. Was running marathons but back down to 5Ks. Takes my mind off all this. I also have B E.
The HH has me concerned. Don't even know how large it is because the doctor never put it in his notes after the last scope. I will definitely see what the consult leads to though. The thing with burping, I do it a lot now and sometimes try to suppress it at night (LPR). That may be where the acid is causing the damage because I am not feeling it anywhere but my throat now. And if you can still burp after Linx, then I don't know how it will affect me afterwards then sigh:( What a journey this is. The nissen is out of the question due to B E. B E eliminates probably all surgical intervention since it has to be monitored. I guess I will find out next week.

Note: I have apple cider vinegar tablets, I may try those again. I am waiting on a pH monitoring appointment from my regular GI people. I would like to see what is going on down there also. Two scopes in 16 months and a barium swallow. Just think about people who have never been scoped. But then again, even with B E, its a wait and see from nearly all doctors.

Post Edited (GIANI) : 3/7/2015 4:13:24 PM (GMT-7)