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Linx operation

Posted , 14 users are following.

sue01472
sue01472

My son had the Linx procedure 4 years ago. Unfortunately it was not available on the NHS and had to be done private. It was the best thing since sliced bread, as the saying goes, despite NHS consultants against the op as they knew nothing about it at the time. After the Linx operation, my sons NHS consultant kept in touch asking how everything was and he became quiet interested. 2 and a half years later this amazing operation became available on the NHS. I was ecstatic that there was something far better than the NF to all those suffering with acid reflux. If anyone wishes to ask any questions we will gladly answer any questions, we have dealt with alot of emails around the world.  

5 likes, 21 replies

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  • Wilfie
    Wilfie sue01472

    Posted

    Hi there Sue - I have suffered with the curse of borderline barrats and now reflux over the past few months and maybe  longer , I was actually diagnosed with asthma 2012 after a bacterial lung infection and received  months of inhalers and nebulisers all of which made me cough more.

    i omitted to sayI have been treated via buos over the last 10 years with digestive problems.

  • Wilfie
    Wilfie sue01472

    Posted

    Dear dear - so sorry my reply went thro too quickly

    continuing my message, I will cut to the chase, after all the private consultations it was decided it was my reflux causing the asthma type symptoms, which is apparently a common thing - as the reflux can effect many parts of your body, I have. Lso been treated for rhinitis and Sinitus- after a lot of tests with different consultants it is now confirmed it is all due to my acid reflux - hooray a proper diagnoses.

    i have asked my gastro enterologist about this operation via BUPA at the private hospital I attend and he advised me not to have it - due tothe complications that come with it - I was astonished at his statement - that's is why I have been interested in your statement as this reflux is driving me crazy

    a) always a sore mouth and tongue

    b) always coughing throat clearing and spitting the bubbly yucky foamy stuff

    c) sore throat and feeling something's in my throat

    etc and the associated problems that come with it.Things are quite miserable , however recently I have been trying and alkaline diet which has helped

    i would appreciate any helpful comments you may have 

    thank you for your time -- glad your son is back to normal - regards Wilfie 

    • AcidTrees
      AcidTrees Wilfie

      Posted

      Hi Wilfie, apparently one in ten asthma diagnoses are where asthma type symptoms are caused by reflux, but mistakenly diagnosed as primary symptoms of asthma. I think its caused by refluxate aspirating into top of lungs and just being in the airways, as asthma is a disease of the entire airway, not just the lung.

      Sorry you're having this trouble but glad the diet is helping a bit. Alkaline water certainly helps me and a good diet leaving out the usual suspects - Im having less of the bubble-foam now. I have barretts and an endoscopy every two years to check it but currently no displasia. I dont feel im bad enough to need the linx op right now but it will probably come to that eventually, so im watching this thread with interest.

    • sue01472
      sue01472 Wilfie

      Posted

      Hi Wilfie,

      After my son and I seeing the Nhs consultant he was advised not to have the Linx. My son also received a phone call and a letter with deep concern. This was because it was a new operation and there were only 3 yrs of research on people who had the operation. At the time when my son was booked in, to have the Linx procedure, there were only 2 consultants who could perform this operation. My sons consultant flew over, I believe from italy, but he performed several in the States. My son was monitord for 3 yrs via phone calls, askng if there were any problems. There were little irritating moments,  but not painful. These lasted for 3 months and we were told prior the operation. I have not yet heard of anyone who has had serious problems.  I sympathise with your concern but I ask myself, this operation was not on the Nhs and 2 and half years I read it being available. Surely research would of been much longer. If you feel comfortable and can manage with your diet I would say that is good and by no means I would make a patients decision, I can only give information how my son can  now have a normal life by eating food he enjoys without suffering the pain and everything that went with it. Maybe a second opinion else where, with another consultant to make your mind at ease. I will find the name of the place where we first had our consultation, I'm pretty sure there are 4 practices in th UK. We went to Birmingham and the operation was performed in Manchester. At the time there were only 2 hospitals in the UK the 2nd option was in London but now I have read there are others. As soon as I find which practice we attended I will forward to you, maybe your concerns can be answered to make a decision. 

    • Wilfie
      Wilfie AcidTrees

      Posted

      Hi acidtrees- thank you for your reply - this forum has helped me so much and there are so many people worse off than myself it's so sad that this condition can just rule your life.

      I am slowly finding improvements with the new diet I have elected but just when I think huhugh! I think IV got this reflux tamed it's starts to roar again.

      For my husband and families sake I try to keep a smile on my face as I have always been a happy kind person with a positive attitude to everything in life -but boy oh! Boy with this it's hard.

      I don't take the PPI inhibitors as the side effects are horrible which make me feel far worse and they cause tingling in my mouth and tongue , I stick with good old. Gaviscone Extra and Ranatadine 150mg as prescribed.

      thank you again for your comments truley appreciated ---- Wilfie 

    • Wilfie
      Wilfie sue01472

      Posted

      Morning Sue0142- thank you for taking time in replying, I do appreciate it.

      This darn condition just gets you down - just when you think you have it under control another problem arises.

      i am a very positive kinda person, but you know this just gets on top of you at times, I have thought to myself that maybe I need to see a different consultant, although mine is a really nice chap, he is not a surgeon and unfortunately Bupa and the consultants are like any other business like to keep there clients/ patients for financial reasons.

      I have been under my gastro consultant for 8 years in all for yearly endescopes, the last one in Feb this year when he told me all was fine , how ever, approx march/ April time the reflux went up a gear and I returned to see him, this is when he  didn't recommend the operation, just stronger meds which upset me, he left me with the line if you don't get on with the blockers see my. GP for another alternative, it was at that point I felt my cynical thoughts popping up.

      When my asthma seemed to detrioarte my GP refererred me to see a thoracic consultant, who had a ct scan and airways testing all to prove no asthma in situ- the same consultant referred me to an ENT consultant for Sinitus and rhinitis -BOTH consultants diagnosed GERD and reflux !!!

      At this point I was sent back to my Gastro guy.

      i have asked myself is this because he is not a surgeon and I am a good money spinner with yearly check ups?? Or am I just cynical?? Crazy 

      Once again thank you so much for your time ----- regards Wilfie 

       

    • sue01472
      sue01472 Wilfie

      Posted

      Hi Wilfie,

      Your very welcome and I hope everything is sorted for you.. x

    • AcidTrees
      AcidTrees Wilfie

      Posted

      So sorry you have nasty side effects - have you thought of trying a different ppi as it sounds like what you take currently doesnt control your symptoms enough? Though maybe you've tried the lot already sad  Guess ive been lucky - i spent years refusing to take them fearing side effects and also that the drop in stomach acid would mean i couldnt digest my food, but in fact that's not been too bad. I take lansoprozole 15mg in a.m. and 30mg one hour before bed. And sleeping on a wedge pillow has helped.

      Hope you can find some relief with LINX or otherwise. Best, jean

  • karen2375
    karen2375 sue01472

    Posted

    Hi Sue,

    I have been to see a consultant in Glasgow. He runs a Digestive Health clinic. I have had an Endoscopy and there was damage to my oesphagus, he has taken biopsies which I am waiting for the results for. I have silent reflux, so I dont get the normal heartburn. I get the burning in my throat and tongue, it has aslo affected by lung function, even though my GP says my lunds are clear. I used to run half marathons, now I get out of breath climbing a flight of stairs. I dont sleep for more that 3-4 hours a night even though I am exhausted. I have been on PPI's which made me feel worse. I asked the consultant about the LINX treatment which they do at this clinic, but he said it was early days and I would have to wait and see what the tests showed. I am afraid he is going to put me pn PPI's long term, which I do not want as everything I have read about them tells me they are not the answer and cause more problems than the reflux. I would be really interested to hear how your son got his LINX surgery, and how his quality of life is now. If I had to pay for it myself I would if I thought it would make me normal again.

    Kind regards,

    Karen.

    • Swissmiss1291
      Swissmiss1291 karen2375

      Posted

      Karen hi,

      Your question was posted quite a few months ago, so maybe you have managed to research your options by now, in case you are still looking for input and opinions; I had a (private) LINX operation in March 2013 in the UK and can honestly say the impact has been life changing. I had to keepp increasing my meds, in the end to 80 mg of Ezompr. as my GERD had got worse over the years. The consultant offered me the Nissan Fundoplicaiton, but after researching the proceadure and the possible side effects, I could not get myself to have it done. On looking for alternatives I came across LINX in the US, eventually found it could be done in Manchester, UK. Before the op, I was unable to sleep lying down at all, I had a constant night coughs, suffered horridly if I drank coffee, eat anything mildly spicy, wine, chocolate well virtually constantly, it really was impacting on my life to the point that I felt I needed to take the chance to get my life back......so I went for it. The first week after the op was pretty awful, I must be honest ! I never had a problem with the swallowing but if I ate anything I procuded loads of mucus , so much so I hid in my room and had to spit it out constantly,   second / third weeks better each week, but it was still having me wondering if  I had made the right decision !  I had been advised to come off my meds after the op, it turned out, that to stop them immediatly was the mistake, as I had been on such a high dose for so long. As soon as I started taking 20mg again, the mucus bit subsided. I then reduced it gradually over 3 months and have not had any since. All the time though I had  no reflux, or heartburn, and no dysphaagia (difficulty swallowing), no coughing and I could lie flat to sleep for the first time in months and months. They also repaired my H. Hernia. After the 3 weeks it all settled down and I have not had any symptoms at all really, no reflux to speak of at all since and no more medication, maybe a small belch here or there as I can now eat and drink anything again. It has transformed my life and it was a lot of expense, but worth every penny in my case. 2 1/2 years on, I occasionally wake up with an uncomfortable numb ache  in my chest, which MIGHT be me sleeping in a position that lets me feel the device, but as soon as I  sit up, roll over it is gone,   as are all my meds and other symptoms (and it could be something else)! Hope that adds to the info !

      Best,  Chris S (53)

    • david55273
      david55273 karen2375

      Posted

      Hi Karen,

      I've made an appointment with a Glasgow Consulatant - maybe the same one you mentioned in your post. I'd be interested in hearing how you got on and if you recommend this surgeon.

      Thanks,

      David

    • Swissmiss1291
      Swissmiss1291 DGR

      Posted

      Hi his name was Prof Basil Ammori (secretary was just lovely Mary - Spire Hospital Manchester - through the Reflux Centre -

      Hope that helps ! x

    • ej48162
      ej48162 Swissmiss1291

      Posted

      Hi. Looks like it was about 3 1/2 years ago that you had the LINX surgery?

      Was it for GERD or LPR or both?

      Any lingering issues? Regrets? Suggestions? Can you eat anything and everything?

      I'm not needing to make a decision anytime soon (hopefully) but want to start exploring now.

      Thank you.

  • summer200
    summer200 sue01472

    Posted

    Hi Sue could I ask whereabouts in the UK this was done?

    I am on a waiting list to have it done on the

    NHS but my local somerset Nhs will not

    Fund the procedure. So I am looking into

    Appealing against the decision. Any info

    Would be useful

    Thanks

    • DGR
      DGR summer200

      Posted

      Hi summer do you know how long is the waiting list?
    • summer200
      summer200 DGR

      Posted

      Hi I just wanted to up date everyone

      On my situation. I received a call from The hospital at Exeter to say They

      Were ready to offer me a date for the

      Linx procedure. BUT!!!! Would not be able to proceed as the individual

      Funding panel in my area Somerset

      NHS had turned my application for

      Funding down.i am now trying to

      Appeal. If Anyone has had to apply for funding or appealed any advice

      Would be welcomed.

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