SuejayUK Linx on NHS

Hi Hopegood, yes my reflux symptoms basically disappeared overnight immediately after the op. I was Atypical Gerd/LPR if that means never really had heartburn, had persistent sore throat, croaky voice, chest discomfort and very irritating cough. My demeester score was 48. My biggest problem was at night when I would wake up every couple of hours with sore throat and cough and chest discomfort and take gaviscon and/or cough medicine on top of daily PPI dose. This happened 2/3 times a night even though I was sleeping in a recliner chair. It was exhausting. I also got heart palpatations at night which I felt were very much related to the reflux but was told by the learned medics that I was just anxious, which is rubbish as when I was actually anxious I did not get the palps but when i lay down to sleep, I immediately started with belching, tasting food and increased heart rate followed by the palps waking me up in the early mornings. All that has gone now which is FABULOUS!!! though I still have some heart related issues re tahycardia which are not Gerd related.
The other major symptom which I now realise is not normal, was tasting the food you eat for hours afterwards almost all day long.....that has gone and it is very strange not to taste my food for hours after having swallowed it. So an excellent result for me.
In addition to the Linx op I had a 5-6 cm hernia repaired. I suspect that little blighter was the cause of all my troubles so fingers crossed it does not come back. Usually folks with such a large hernia end up with a Nissan Fundoplication but my surgeon agreed to try to avoid that and so far so good. I am also off PPi meds and have not had Gaviscon since the op. Absolutely terrific!! I know the dysphasia is not good but it is self limiting and goes away after 12 weeks which is good enough for me.

Four weeks and my dysphasia seems to have really improved. I have had chicken with salad and a bit of coleslaw for lunch and bacon butties for tea and it is like the Linx is not there. i can drink normally and easily so am enjoying my ginger tea.

My tum is healed nicely and although i have a bit of pain in my abdomen I think it is because of extra air in there as it is going down instead of up as before. I am definitely more "windy" than before and am hoping that settles a bit soon as it is not good for company lol

I have expanded my horizons a bit and re introduced tomatoes/radish/cucumber/tuna without any problem. it is as if my tum is not there. No after taste , food goes down and that is it....gone. Great as I used to spend my life tasting everything i ate round the clock.


Re coming off PPis , I think I have had an episode of oesophageal spasm. have had this horrible painful thing before. This was milder but definately very like it with pain in chest/back and chin.......it passed off after a warm drink and walking around a bit. i think it came on cos I was sitting at the PC hunched over I suppose. anyway it has gone now and all is well.

So week 4 and I am really glad I had this done.

I experienced quite a bit of bloating this week . I think this is down to food intolerances rather than Linx as when I knock off bread things improve a lot. Will be reading up about food intolerances as I intend to improve my lot gastric wise as I have been so miserable for so long.

So a good report for the Linx from me, though I can understand if anyone has bad dysphasia that does not resolve why they would reject it. I have had just two stuck episodes and I coped but would not cope with them every day. Hopefully I will not get any more episodes of stuck-ness ( probably famous last words) !! It is just 4 weeks in and so I have 8 weeks to go before it is supposed to subside completely.

Onward and upward then and good luck to anyone getting the Linx.

Hi SuejayUK,

We are closely watching your posts.

From what I have read, the rebound period may last one or two weeks. Be patient, you will be fine.

I am glad that linx works for your LPR.

Best
Hopegood

SuejayUK. Here is PubMed link. It tells you the rebound duration ans when the various kicks in. I found this very enlightening. Hope this helps. Best to you.

http://www.ncbi.nlm.nih.gov/pubmed/15679764

Not had a good night. Up 3 - 4 times due to stomache throbbing and discomfort. NO reflux at all though. Felt a bit down as really thought this was all cured. Is this rebound?
Anyone else had this discomfort on an empty stomache? It is like a chewing /gnawing sensation with throbbing . Mild nausea Get it when I am hungry/empty tum daytime but more so in the early hours of the morning. Tum also throbs after certain foods....bread/biscuits/milk.
So back on lanso and gluten free etc again. That was Saturday. Things improved for a couple of nights and then got worse again last night ( Monday)
Had evening meal and later a handful of choc M & M's from husband who was eating his way through a packet of them. Think they triggered off the stomache pounding (can feel it in my neck too) pounding pulse , throbbing stomache. Very disconcerting. Took 2 rennies before bed.
Could not sleep for pounding and throbbing. When I turned over I had heart palpatations, racing and jumping about.. Dosed off and was woken up with faster pals..... this happened two or three times...breathe in heart goes faster ...breathe out it slows down....wierd and all the while my throbbing stomache and pounding sensations. Took gaviscon early hours...slept for a while till woken up again.
This morning my mouth is horrble tasting, stomache upset and mild throbbing and pounding in background.....stomache /throat/neck. Still no reflux in classic terms just upset tum. Mild nausea too. Had porridge for breakfast which seems to be repeating....1st time since op .Wish it would all go away. Not a happy bunny at present.
As luck would have it my follow up appointment with consultant is tomorrow. Do not know what he will make of this. Anyone any ideas?
It is so demolarising to feel better and then it all evaporates....... Fed up

Hi,

I think it's probably rebound as well. I know that my GERD symptoms (made worse by fatty foods and ESPECIALLY chocolate and caffeine) include nausea and a gnawing sensation below my ribs, and the latter often seems worse on an empty stomach. It's really unpleasant, and I'm sorry you're having to deal with it. It could be rebound and/or your stomach might be slow to heal or aggravated by all the changes that have happened post-procedure. Hope you feel better soon. Try not to worry too much (easier said than done!)

GC

Well still struggling with the painful stomache symptoms...no real reflux above the LES other than a very very mild sore throat feeling when I wake up.
I had three really terrible days and nights and so ended up going back on PPI lansprazole which i am not happy about....30 mg did not do it and I was up at night with the throbbing stomache and pounding heart........cannot blame the Linx for this as it is keeping it all below the LES and doing its job but I really hate PPis and wish i had never gone on them...do not know how I am ever going to get off them....... feeling a bit de jacted with it all as I have done so well with the Linx. Massive improvement in reflux symptoms 99% gone overnight just an echo of a sore throat due to all the extra acid in my tum due to PPis rebound......to be scuppered with that is quite depressing. My dysphasia has evaporated and I now have to remember I actuallu have an implant and not to eat too fast so all would be perfect if I could get off the PPIs. Has anyone out there managed this? I do seem to get bad rebound if it is rebound.....it is confined to my stomache which feels all upset and throbbing, very strange......must muster up the strength to research and master this.......

SuejayUK These are some thoughts,-- when you eat fatty meals like beef and eggs and ice cream, -- the stomach has to put out MORE acid (with or without a Linx) to facilitate the digestion of fat. Why not cut back on fatty foods for a while to see if it helps. Eat more neutralizing vegetables, potatoes without butter, cream or oils. Not hard to try and so worth it if it helps. It helped us.
Also, we titrated down the PPI medication VERY slowly over several months by splitting the capsules, first in half , then split into thirds, then quarters then eighths. (We too learned this from JustPassingThrough) however ours was for a much longer period of time then his. If we experienced symptoms, we went back on the previous dose for a day (but it was never a full dose). Eventually off and if symptom came up, we used Tums and / or Gaviscon Advance. It is hard to stop the rebound effect as we had to print articles from medical journals to show the family doctors to convince them. They are so busy that it seems they don't have time to read everything.
Yes, they need to better plan and prepare the Linx patient prior to surgery. For us, they made it seem that you walk out of the hospital, stop the medicine entirely and eat anything you want, even on the way home.
We appreciate our doctors. We are not doctors on this forum. Please talk to your surgeon about your continuing symptoms and follow his directions as he is the only one who has seen your insides and is best to help you.
Wish you the best. Please keep us advised of your progress-- and you WILL have progress. Kindest regards. Pat

SuejayUK here is a gov. Article regarding the duration of rebound.

http://www.ncbi.nlm.nih.gov/pubmed/15679764

Thanks for that Pat. I am sure that is what is going on with me. So I am back on PPI 30 mg daily. Did not seem to help at first but I am beginning to feel better now. I am also taking DGL liquorice before meals to ease stomache inflammation and acidophilus pro biotic too. So have felt much better since adding the DGL and not gone back to pre op 45mg. So managed to drop to 30mg. Will heed your posts 're cutting down slowly. GP says may never get off but we shall see. My dysphaia has more or less gone. Great!/

Thanks for your post JPT. I have read quite a few of your other posts too and found them very helpful. I thought I was posting in the Lynx Group!!!....can you tell me how to do that.....most of the ones I have read are closed.
I too went to see Dr Ashford in 2012 but my PMP would not pay for the op so had to wait till it came on the NHS before I could get it . I was absolutely fabulous after the op to start with and was encouraged to stop the PPi over two weeks and to test out the Linx "to the limit " which was praps not the best advice but even the surgeons are new to this, there being just two on the NHS who do it and I am very grateful to mine for his help. I was refused by one due to my hiatus hernia which turned out to be quite a large one at 6 cms but the second surgeon, a hernia specialist, did the op and repaired the hernia too. My problems returned gradually 3 weeks after stopping PPIs so five weeks after surgery.
Being an older lady , retired teacher, I do not really lead a wild life re drinking and eating lol and mainly have problems at night being woken up with upset stomache, foul mouth and pounding/throbbing feeling, all when my tum is empty. I had major sore throat and hoarse voice and chest discomfort with it pre linx but this is milder now. I also have pounding and stomache throbbing after food if I eat too much ( simple enough to cut back on portions as you say) or with foods that disagree hence I have gone dairy free, gluten free and caffiene free and cut out tomatos and lots and lots of other flagged up foods. I will soon be food free if I carry on lol I have lost 25lbs. I was on 45 mg lanso pre op and now am on 30 mg post op. Still getting the night time breakthrough and cannot come up with anything to make it go away. Last night I had stopped eating by 6pm. Bed 10am. Up 12.25, discomfort and throbbing, drank water ..back to sleep, up 2.45 more discomfort and throbbing. Some bright spark said try a dry biscuit....did that, back to sleep woken again 5.15am worse discomfort and throbbing so gave into the gaviscon and back to sleep lol till 7am.
It is Gerd/silent type reflux as it is basically a milder version of what I had before. My 'strange" symptom is the pounding/throbbing I get in stomache and neck, rather like the pain you might get with a post op tooth throbbing away and it definitely affects my heart rate /pulse loudness though heart is checked out fine. Soon as I mention this pounding heart /throbbing feeling medics say oh it s anxiety palpataions but I am not anxious just fed up of it and anyway it is very responsive to gaviscon which is not a regular fix for anxiety. So, I am 8 weeks post op and it is early days yet. Will stay on the 30mg till things settle again (my GP does not want me back on 45 if poss) and then tirate down as you suggest cutting to 15mg rather than 30mg for one day a week for couple of weeks then 15mg two days a week etc till I get down to 15mg every day and then do the same again till I get to nil...hopefully without rebound.
I have been looking at the pepcin test you mentioned and may at some point have that done to see if I am refluxing still if symptoms persist. My GP cheerfully told me last week I will not get off the PPI as I will be "sick as a parrott" without them...he's right so far lol. I have to be positive though as other pre op symptoms have gone away completely and I feel a lot better for the hernia fix too, I am sleeping in a bed again not a recliner chair and other persisting symptoms are milder on less meds so thats a good start. I would like to improve even on this though so I keep trawling the net for answers. Will keep posting and reading the Linx threads. Thanks again.
PS sorry for being a bit long winded lol.

Hi SuejayUK,


Just saw on the LINX facebook forum that a fellow who's had similar problems with burning in throat a few weeks out discovered post-barium swallow that the device was actually a little too tight and wasn't letting everything go down all the way... maybe check that posting and see if that offers any avenues worth pursuing with your surgeon. Hope you're feeling better,

GC