SuejayUK Linx on NHS

Hi everyone, after a very difficult three years with severe reflux I was finally fitted with the Linx system last Friday in UK on the NHS. Everything went really well. I had a hernia repair operation first and then the Linx magnetic band fitted. After waking I had a very short session of wretching and feeling sick which was not nice but it soon passed and although I have pain in my shoulders , I have no pain from the Lynx device and I can swallow and eat just fine. Obviously I am very tired and rather sore but this is improving. I feel a bit sick most of the time too but it is so hot here in the UK at the moment and I am still on painkillers for the shoulder pain so praps that has something to do with it. I am hoping it will pass.
I have cut back on the PPI meds by a 3rd, from 45mg daily to 30mg and will gradually reduce to avoid rebound. I am able to sleep flat with no difficulty now whereas before I had been sleeping in a chair or propped up in bed...that is a major improvement right away. I am eating small meals four times a day, things like prorridge, steamed chicken and veg and baked potato and beans, plain biscuits, crackers and cheese, scrambled egg. No bread as yet as the surgeon said avoid bread.......and so far no reflux at all.
I was a bit unusual as I had silent reflux with very little heartburn but a bad cough, irritated chest, sore throat and croaky voice and food came back up if I lay down. I have actually slept through the night without waking 2 or 3 times to take Gaviscon for the first time in years...so again a big improvement. I have had problems with bladder retention after the anesthetic , jaw pain and with heart palpatations once I got home but these are problems I have had before and are more to do with my general health rather than the Linx itself. So, so far so good, if I could just get rid of the nausea feeling and the shoulder pain things would be fantastic but I think it is impossible to have operations and not have some after effects so I am very pleased at the moment. Taking it steady until things improve and I am less tired, but a good outcome straight away re reflux symptom improvement. Will keep you all posted as I progress. Today is day 5. keep waiting for the dysphagia which will no doubt come but nothing as yet.

Hi Albez, re "they offer the Linx on the NHS?" not exactly no.........all the hospitals that do the Linx procedure private and NHS are listed on the Torax UK website with surgeon names etc. There are only 2 NHS surgeons as far as I know who offer this at present. I went to one in Surrey. The other is in Cornwall. The selection process is quite rigorous and as yet there are Nice guidelines for patients but not yet full approval as Linx here is in the early stages of introduction with trials and studies etc. I found out about it all by putting simple searches into Google etc and looking at the Torax Uk Website. My GP was very supportive too as I had been in real need of an operation for 2 years but did not want a fundoplication. If you live in the UK, and your test results meet the criteria, you may qualify........no harm in enquiring.

Hi robichris, no thankfully I do not have barretts, at least I didn't when i had an endoscopy two years ago. I originally started with episodes of eosophageal spasm which were excruciating and of course everyone thinks you are having a heart attack. I was put on Lansoprazole following that in 2008 but things developed and I had a lot of nausea, couldn't eat, sore throat, chesty cough and had an inflamed oesophagus which was treated with 60mg lanso for a while which seemed to help. By the time I had the endoscopy things were clear. They also said I did not have a hernia but that showed up on a barium swallow as 3 -4 cms but turned out to be 5 cms when they went onto repair it. I had a demeester score of 48, which is pretty darn high I believe. I think one of the reasons I did not get barratts was because I was put on Lanso early due to the eosph. spasms and because I was also taking diclofenac for osteoarthritic pain.....so I have been lucky there.
I was concerned a fundo would just swap one set of symptoms for another and had a friend who was really bad after it so avoided that and waited well over a year for Linx to come in more in the UK. I was messed around a lot by a private hospital who promised to set it up for me and then didn't and then finally the good old NHS came up trumps and I had it last Friday. You are right, I could eat and drink straight away after the Linx. In the hospital they kept tryng to give me things I had been avoiding for years like shepherds pie and coffee and orange juice so I had basically nothing the first day but by the next day they organised porridge for me, my hubby brought in ginger tea bags and they gave me baked potato and beans .....so eating little and often but just fine. All solids. Torax advice is to chew food more, take sips of water with the food and take it slowly with small meals more often. You have to exercise the device so going onto liquids is not advised ...anyway I have no soreness in my insides which I expect you would have with the nissan fundo.
I am very tired and am still getting nausea but again this is an old problem resurfacing and may be nothing to do with the linx or hernia repair. I have other health issues that have flared simply because of the stress of having surgery but it is early days and I am generally doing very well. I will keep you posted and thanks for yours.

OK so I am one week in post Linx and hernia fix op. Feeling rather tired for much of the time still, and I have aches and pains generally and particularly in shoulders, face and jaw and back of head. I still need strong painkillers to keep these from making me miserable.
They are waining a bit and I have cut back a little on the pain meds. Nausea is a bit better but my appetite is shot really. I know I have to eat to exercise the device but I am not that interested, easily full when I do get hungry and find that the taste of food is a bit off because I am a bit off still if you get what I mean.
Still not getting any dysphagia, certainly not with food and today I ate two slices gluten free toast and jam, grilled chicken with a little salad and bacon and cheese on top and cole slaw and later a little bit of ice cream and a couple of crackers with cheese. Not bad for someone with no appetite lol.
I am so tired though that I am having to sleep at times during the day and at night..This could be due to the fact that I have fibromyalgia syndrome which is generally major achey sleepyitis lol and I think that because of the op it has gone into flare. I was so tired today i wanted to cry....but I did the sensible thing and went to bed instead. And I am so out of it when asleep. I refer to this as my deadly sleep.....if it comes on then the plug is pulled and off to sleep I go.....I have been known to fall asleep going up the stairs and years ago on my suitcase in Waterloo station........not a good thing to do so I usually make sure I don't get to this pitch of tiredness but having this op seems to have re activated it. The world could explode and I would continue snoring lol.
Resistance is futile re fighting the deadly sleep so I just find the nearest bed and snore. My hubby knows if it all goes quiet I am fast asleep. It is a matter of building back my stamina until I can manage to stay awake all day again.....might take a while but that is the goal.
I am still getting heart pounding after eating and can feel it in my neck and chest...very strange...don't like it and wish it would go away.....but like the fibro this is something pre existing that had settled but has flared up since the op so I am hoping it will settle down.
As for reflux....it has gone..... I no longer am constantly re tasting my food for hours after eating it, I am not belching up food taste , no regurgitation on lying down and my chest is clear and I can breathe better. No coughing and I am not constantly clearing my throat. No more sore throat in the morning, and I have not touched Gaviscon since the op. I have cut back my PPi by half and am ok.....So definite result there and it is such a relief!!!! Onward and upward!!!!!

Day 8 Difficult night as it has been so hot. Got to sleep eventually. On waking did not feel too good as I had nausea and pounding heart. Had a small bit of breakfast and felt a bit better. Improved as the day went on after taking tramadol and paracetemol for the pain in my head, neck and shoulders. Managed to attend my brothers birthday do which was in the afternoon . A family affair with lots of babies I could not pick up due to hernia repair.
Re Linx... I am still very tired and full of aches and pains but at least I have been out today. Hubby drove, I slept on the way there and took it very easy at the party. Despite all this tiredness I am doing well and was able to drink some strawberry non fizzy non alchohol punch and I managed to eat some food from the buffet. Pre Linx quiche would nearly kill me with reflux but I managed some today without any after effect at all which is great. Cannot eat as much as before but thats good too really....might lose a few pounds. I also had a bit of trifle and a sausage roll, again stuff that hitherto would put me into purgatory. I also gave a couple of healthy burps too ........and no dysphasia as yet, just a little bit of tightness and the need for a double swallow if I gulp a drink too much. It is 8 days since the op and the little plaster strips are starting to come off all on their own, probably because I can shower again. I am much less sore than earlier days and glad to be back to showering properly as at first you have to wait a few days and in 30 degree heat that is not good. OK.....anyone any Q s about the procedure or after effects feel free to ask. Think I have been lucky so far re side effects.....night all.

SuejayUK we are anxiously reading your progress. Thanks for writing

I'm also watching-- I am considering the procedure myself, so hearing about your recovery is very important to me!

Congrats on the quiche!

Bit of a hitch today as I had a really bad session with the dysphasia which made me quite ill. It had been a busy morning with a visitor at home and we went out late for lunch. I ordered steamed chicken with pineapple and tomato and a few chips plus a drink to wash it down but it became very problematic and I had a lot of pain around the area of the device and across chest as the meal progressed so I could in fact eat very little of it. It felt as if the food did not know which way to go and was twisting round like a washing machine......I thought at one point it was all coming back up ( yuk) because it certainly was not going down , but I kept swallowing valiantly but it really distressed me and we had to leave the restaurant and most of the meal and my hubby took me home. It passed off fairly quickly, about five minutes but I was so exhausted by the pain and distress of it all I slept for about four hours , exhausted by the whole experience. Been ok since then and had cheese and crackers and a bit of cheesecake with little problem but lunch was a nightmare.
Looking back I think it was too much meat in one go. Although the piece I ate was very small and even that broken up and chewed into smaller pieces. Obviously the device does not tolerate meat well yet. I think perhaps I was a little over confident having done so well so far and ate not so much too much but too fast creating a build up in the oesophagus.....like a traffic jam of chicken lol. I need to stick to several very small meals /snacks a day instead of attempting half a normal meal as I did today. I think going out for lunch may be off for a while.....at least I will be quids in lol.

Been good today as far as dysphasia is concerned. Had a turkey salad with only very mild feelings round the LES area and had toast and biscuits and a dreaded tomato with no ill effects at all. Being very careful though and listening to my bodies reaction to every bite.......do not want a repeat of the previous days experience with dysphasia.

Great day today with no nausea, no dysphasia and virtually no shoulder pain. Don't get me wrong, I am being ultra careful on the chew and pause and swallow gently front with sips of water in between, but I had today........porridge for breakfast, egg sausage chips ( odd one or two only) and beans for lunch and shepherds pie runner beans and carrots and rumblethump (mash and cabbage sort of) for tea plus I had a few chocolates as a snack...yes chocolates that would normally have half killed me lol.......no ill effects what so ever.....
so that is encouraging, I am hoping if I am careful and eat small portions like today.....about half normal portion....... I can get through this phase. Was nice a bit of normal food today and not be in purgatory.
To be honest my appetite is not what it was and so the really small portions are just right for now......may become a habit and help me stay slim....so quite chipper about it all today.
Previously most of the supermarket was off limits including tea coffee milk bread chocolate salad onions etc etc so it is a whole new world in there choosing something other than white fish and mash. I bought a packet of cornflakes today.....wow have not had them in a couple of years and a ready made shepherds pie and a lasagne !!! which normally half kill me so progress is good and ongoing.
It is day 12 days since my op and I have no regrets so far.
Will keep you posted.

Hi GroverCat, I have seen you on other threads. How are you doing now? Did you go for the Linx surgery yet or are you still observing?
I think I am doing exceptionally well. I have read other folks difficulties and they seem to have had a lot more pain in the area than me. I had a major hernia fix ( almost 6cms!!) and the Linx and can honestly feel neither as particularly sore afterwards....So I consider myself very lucky and only hope it continues.
I do hope you are feeling better these days.

Hi Suejay,

Glad to hear about your good day. What an odd sensation to hear your esophagus "speak"! I am feeling a bit better than I was for most of the last few months, but I definitely still have reflux in spite of the Dexilant I'm taking. I decided to have an endoscopy and a Bravo Capsule fitted at the end of this month or sometime in September, maybe, in California where a former doctor whom I trust recommended I go for an unbiased opinion. I should get a call back to schedule soon. I'm slowly moving toward the LINX, but I want to make sure everything's in order and I feel I've done all my homework with regard to my own body's needs before I jump in.

Many thanks,

GC

Once again been away for a few days visiting friends. For whatever reason I had a major attack of dysphasia which was really very unpleasant. I think praps it was caused by carrotts that were a bit hard or the pastry on the suet pudding...anyway something got stuck. It could not decide to go up or down and it caused pain in my chest and I was literally foaming as well as making thick saliva...yuk and awful....it lasted about five minutes and then passed. I leaned over the sink and tried to breathe and drank sips of water while frothing up the foam......very wierd. Once it had gone my chest ached for a while and than that was it. Had no problems since and I have eaten chicken and bread and salad and rice and ice cream and biscuits and a pasty and chips ( not all at once lol) and today a very fluffy bread ham sandwich and no problem...so there you go.
I am sleeping better. Still get a bit of heart pounding and a few palpatations that I feel when all is quiet but otherwise sleep is so much better than before. I am drinking better too as it is easy now as opposed to being a bit shaky for the first week or so. SO 3 weeks and 3 days in and I feel I am doing very well with just the odd upset with food getting stuck. Still chewing and eating carefully and slowly and small portions but that is a good thing and well worth it if the reflux is gone.
Been off PPi s now for a week.doing OK...no dreaded rebound as yet, Taking acidophalous pro biotic capsules to help and may take apple cider vinegar after main meals/bigger meals when I can eat them to aid digestion but not at the moment. I found APC helpful when I have tried to come off PPI before.
So so far so good.....typical problems and excellent reflux improvement.
Anyone know if I am posting in the right place for the LINX club? have found those threads very useful with others experiences very similar to me. I am hoping things will continue to go well. Hope my hernia fix stays good too....dont know how to measure that but will no doubt notice it if it comes back. Fingers crossed.