Nissen surgery
Posted , 21 users are following.
I just wanted to ask if 63 is too old to have the nissen surgery for silent reflux. I am a bad case. I just want it to stop but doctors just pushing the pills at me which does'nt help at all. They say to take these forst...but they are not helping at all. I cough , sleep sitting up lots of phlegm and burning mouth. This is awful anybody with any answers. Am I too old to have this procedure?
5 likes, 75 replies
nfa phyllis10549
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It is a demanding operation though, and might be worth you looking into the newer procedures such as LINX and endostim, although endostim is only available privately, and is costly. Also, not many NHS surgeons do the LINX procedure.
Do not rush into surgery. Some do very well after fundoplication, some say the "side effects",short and long term are worse than how they were before.
Give the medications a good try. Sometimes taking a PPI both morning and evening, then something like ranitidine before bed, togther with the "anti-acid" diet can help alot, and is worth a six month try, but obviously you would need to discuss with your medics.
Have you had all the tests for reflux, such as manometry; endoscopy; 24 hour acid measurement and/or Bravo capsule test? (Just "Google" any of these terms you may not be familiar with).
Good luck. Yes this is an awful, underrated disease!
Do come back if I have raised any questions.
phyllis10549 nfa
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nfa phyllis10549
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I also meant that it is not just the time around fundoplication surgery that is demanding, the after effects of the surgery can cause difficult symptoms of their own, such as gas/bloat; pain and long term digestive problems that last for ever.
You seem to forget that most people on this Forum are "fellow sufferers" from GERD. I have myself wondered, at times, if "Life" is worth going on with due to the severity of symptoms. I am having surgery in ten days time due to the level and persistence of my own illness.
Yes I know GERD is "demanding", BUT I was trying to warn you that a lot of people have come to regret having the fundoplication operation, and found the after effects and quality of life even worse than the GERD symptoms, NOT that it even stopped all the GERD symptoms anyway. Patients had this fairly stressful op and found they still had to take PPIs, and if there was any improvement in their acid reflux, it did not last very long.
Given that, there are also lots of people who say that fundoplication was the best thing they ever did; wish they had had it done years before etc.,
Have you bothered to research about fundoplication on HealingWell and other "chat sites"? You will find what I am talking about: many successes, and many people who regret having that done. Yes, of course I understand you have really severe symptoms and are fed up with this horrid disease, we ALL are, but rushing to have this op may not solve your problem. It is worth looking in to things a bit more, but at the end of that fundoplication may be the right next move for you,and may help alot. Despite your self-centreded reply I hope it does work for you.
All I was trying to say is go cautiously, and think about what other options there MAY be, such as endostim; Stretta; LINX etc., but they may not be suitable in your case.
That said, there are also different approaches to fundoplication to consider such as full 360 Nissen; Doret and Toupet Nissens etc.,
Of course, in the ideal world you would be discussing all of these with your health care advisors/medics, but many of us have found these to not be too open minded about other approaches, but perhaps you are lucky?
I asked, have you had all the assessments, as there are indicators from those tests that indicate if you are likely to do well with a fundoplication procedure. A good surgeon would only proceed if the evidence from those meant you had a good chance of doing well.
In short, put your energies into informing yourself about the pros and cons of fundiplication rather than sending grumpy angry replies to people on this site who are often "struggling" just as much as you are.
Members here have gone to a LOT of trouble to reply to you. I think you are lucky to get this information from them.
phyllis10549 nfa
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phyllis10549 nfa
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bev08623 nfa
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I am 71 and three weeks post op on the Niessen Fundiplication.
I suffered terribly from acid reflux for 15 months and was pretty much debilitated. My Gastro doctor told me "no cure for Hiatia Hernia, live with it." On another occasion he told me "this is all in your mind, go see a psychiatrist." I finally got the courage to request another doctor within the practice. He took my condition very seriously and began all the required testing (endoscopy with insertion of the Bravo capsule, and after that the manometry test.) At that point I was directed to a surgeon at one of the major teaching hospitals here in VA.
I awoke from the surgery on 2/13 to find one of the attending had hit my lung and it collapsed. That was the worst part of the procedure. My abdomen was very sore and is still tender but I was able to get home in 2 days and progressing very well. The burning acid has subsided and the severe pain I had in my chest cavity has diminished quite a bit. As I said "I am still tender but imagine I am healing from the inside out."
I consumed liquids for 3 weeks and am now able to eat whatever I can chew and eat slowly. I am excited to be seeing my surgeon in 2 days to see how he thinks I am doing.
Prior to surgery I was taking 40 mg. of Prilosec twice a day. That is entirely too much PPI medication. It is hard on your kidneys and was not helping alleviate anything.
I believe I made the right decision and hope soon to be feeling better than I have in well over a year.
Best wishes to all. I know the pain that Gastrointestinal Reflux Disease can inflect.
jennyf330 nfa
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Long term sustained use of meds like Prilosec cause kidney damage. My mother had to go off of it because of that. I had a Nissan about 12 years ago when I was early 40's. Has worked well. Recovery is a little rough but as long as you follow the guidelines of no fizzy drinks ever again, chewing your food well and taking small bites, eating slowly, to mention a few, you will do well. Not being able to vomit is a hard thing when you have a stomach flu but you deal with it. Increase intestinal gas is unavoidable. All the air that you gulp in when eating or drinking has to come out eventually and if you can't burp, well ....there's only one other way out. That's probably the most irritating and embarrassing side effect for sure. But I never regretted having it done. Saved me from a life of medicine and diarrhea from the medicine. I had GERD from a sliding hiatal hernia.
Barretts phyllis10549
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LINX is highly promoted in US and seems sexier than Nissen as it is new, good-looking (but won't be seen once implanted) and sold on attempted denigration of Nissen whilst secreting its own shortcomings.
It may be the best artificial alternative to Nissen but costs twice as much and data are not available for more than 12 years. A study of 100 patients over 3 years showed 85% satisfaction compared with the 200 patients over 20 years having Nissen reporting 94% satisfaction.
Possible side effects of Nissen include inability to burp or vomit for a couple of weeks whilst the scar tissue softens. Possible side effects of LINX are swallowing difficulties reported by two thirds of recipients.
Surgeons' concerns are from previous experience with Angelchik (effetively a "rubber band" round the oesophagus rather than a magnetic ring) that after 20 years had caused so many problems with erosion and migration the majority had to be removed.
Endostim, the "pacemaker" for the LOS, looks promising. One of our surgeons at Southampton is qualifed to implant the device which he thinks shows considerable promise.
But you may find something like the Reza band could be helpful. It's a special collar worn around the neck at night that by applying gentle pressure on the cricopharyngeus reduces nocturnal extra-oeosphageal reflux.
It has just been assessed by the "Horizon Scanning Research and Intelligence Centre" for the NHS to decide whether to make this device available - which is likely to take 2 years but It has now been made available privately in UK marketted by GDS Medtech and costing £229 for the device which has to have been approved by a qualified physician and have an initial fitting by a doctor.
phyllis10549 Barretts
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nfa phyllis10549
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phyllis10549 nfa
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Curtis1973 Barretts
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Barretts Curtis1973
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The surgeons are the best to decide what form of fundoplication to use when they have examined the patient.
Nissen is still the gold standard. Problems of belching and vomitting, whilst commonly reported, soon die away as the scarring heals. I think they're blown out of proportion. I burped before leaving hospital after my fundoplication.
A study published in Surgical Endoscopy in 2014 reviewed the durability of Laparoscopic Fundoplication over 20 years and concluded, "Long-term results from the early experience with LF are excellent with 94 % of patients reporting only occasional or fewer reflux symptoms at 20-year follow-up. However, 18 % required surgical revision surgery to maintain their results. There is a relatively high rate of daily dysphagia but 90 % of patients are happy to have had LF." Surgical technique has improved greatly over the 20 years and "failure" rates are now predicted to be only around the 5% mark.
My Nissen wrap came undone a couple of years ago following 5 hours violent retching due to norovirus and I've since had a Collis-Nissen revision.
phyllis10549 Barretts
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Barretts phyllis10549
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However, I have been studying Barrett's Oesophagus for probably nearly 15 years. I diagnosed my own Barrett's 21 years ago from images seen on the screen when I was first scoped and the endoscopist pointed out the bit "like the intestines" that "we don't like to see as it can lead to cancer." He didn't use the term Barrett's Oesophagus. It was a few years later I looked all this up at the local library (pre-internet) and recognised the images I found in a medical book. I've been learning more ever since - especially from the members of various forums and facebook groups I interact with.
I also have friends (and fellow trustees of the national charity I work with, "Barrett's Oesophagus Campaign" and the regional patient support charity I co-founded, "Barrett's Wessex" and my wife's son is a consultant oncologist. I have even been phoned up and consulted by a gastroenterologist before now.
In UK, access to consultants is via our GP (equivalent to a pcp in US). Unfortunately they cannot be experts in all the hundreds of maladies they are presented with and certainly did not recieve the anount of tuition on these ailments as I have. But though I may be considered something of an expert on acid reflux and its consequences, I am unable to talk about any other unrelated health matters.
Interesteing you ask about dysphagia as that's the latest "gap" I've been filling in in the book "Down With Acid" I have been working on for the last few months. If you go to the site DownWithAcid org uk you can find "Swallowing Difficulties" listed on the Contents (home) page below the major heading Combinations and Complications.
And, for what it's worth, I didn't think you were rude but we can all get a bit touchy when stressed or troubled by our symptoms.
david61512 Barretts
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Personally I had my own op only 8 months ago and think it's been fantastic. I'm 56 so not too much younger than you.
I've entered the Great South Run next month (10 miles on Portsmouth/Southsea seafront). Believe me, I worried about dislodging the stitches at first with all the jiggling upand down in training. I still bring up phlem regularly but it's improving with time. Acid and reflux are now zero.
david19556 david61512
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david
Barretts david61512
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Good luck.
Barretts
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6 months after my Collis-Nissen revision, I cycled over the Andes.
phyllis10549 david61512
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phyllis10549 Barretts
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nfa Curtis1973
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If you put "Toupet Fundiplication" in to your search engine, you will hopefully find quite a few helpful articles comparing Toupet (270 fundoplication) with full 360 fundoplication. The Medscape article especially is quite helpful.
Also, on Facebook there is a Toupet support page, and a Toupet 270 support group. One of the administrators of that group, Lynda Brignall, is especially well informed on partial fundoplication, and has had a really good experience following her own fairly recent partial fundoplication.
I had some trouble trying to find links to the Toupet 270 support group on Facebook just now (not sure why), but if you have any problems you could search for Lynda Brignall on Facebook and send her a personal message via Facebook asking how to join the toupet 270 support group she "hosts" on Facebook. Then you could "post" any queries you have about the different fundoplications to hear back about the pros and cons from people who have actually had either of the main fundoplications.
I have found that surgeons have fairly firm ideas about which they think is the best procedure, and it is not always easy to find a surgeon on the NHS who will do the procedure that you want, so it is a bit of a case of asking around and finding a surgeon who does which ever you want. However, it is much easier (in my experience) to find one who does the "full" 360 rather than the partial. I think most surgeons are well aware of the issues around the 360 and take various measures to reduce the risk of dysphagia; problems with burping and vomiting; and the longer term risk of gas/bloat.
It is a lot to think about, and one can not be 100% sure about either approach as there are arguments either way!
Hope that is helpful rather than confusing, and best wishes with your search.
Barretts nfa
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There are masses of data into the efficacy of the different types but the surgeon is the best person to make that decision.
Fid the DownWithAcid org uk site and select fundoplication (which you'll find beneath Reflux and Reflux techniques) from the home (cintents) page for descriptors of the different procedures.
david61512 david19556
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david61512 Barretts
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nfa Curtis1973
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This is actually a PS to my longer post to you below.
Sorry about my confusion about the support groups on `Facebook. However, it seems that the Toupet support group page is sort of being rebuilt, but you can still access it via "Toupet 270 fundoplication support page" on Facebook. When it is rebuilt you should be able to join the group, but I think you can post questions etc., now. The other support group is for Fundoplication, but I found the 270 one a bit more recent in terms of the issues between a 270 or 360 fundoplication.
I am sure Barretts is right about the availabilty of both approaches on the NHS, but the two healthcare trusts in London that I had contact with only had surgeons who all only did the 360.
I still suggest a direct approach to Lynds Brignall via the Facebook toupet page if you want to. She is herself a healthcare professional and has looked into both approaches and is well informed and "balanced" in her views.
Anyway, hope all this is not "swamping" you. All the pros and cons can get very unsettling!!!
Barretts david61512
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If you did want to fundraise, it's not too late. We'd provide you with a running vest or T-shirt and it's easy to set up a VirginMoneyGiving page.
nfa Barretts
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Thanks for this. I did not find much of a choice within the surgeons in the two London healthcare trusts I have had involvement with. They all only did the full 360. Of course I accept that was, from their point of view, from a position in believing that did the job best, and that they could address any issues around motility with a slight variation in tightness of a 360.
However, there are NHS surgeons around who prefer to do a toupet 270 as standard, or would offer a choice, all other things being equal. Yes, of course one must listen to the surgeons opinion as to which procedure he/she feels is best for the patient. That said, some of the surgeons I have seen have not shown any interest in discussing the pros and cons, and have had a somewhat "take it or leave it" attitude, which leaves the patient with all their uncertainties unaddressed!
I have seen your book on line. An extraordinary achievement. Plan to order a copy when the final version is ready.
One thing in your book that was the first time I have seen it linked to GERD was dry eye syndrome. I have suffered most of my life with that, and like you used to have sinus "washouts" as a child (very traumatic at 5!).
Best wishes.
Barretts nfa
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Sorry, I can't think of any gastro surgens in any of the London hospitals presently but know a number of the consultant gastroenterologist doctors.
The surgeons i do know well (and could recommend) are at my local hospital in Southampton - and I know they'd quite happily discuss pros and cons of the different surgery (time permitting, or course
).
Chris
nfa Barretts
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I did not find the last surgeon I was referred to for a fundoplication very "open" to discussing any of the concerns I had, although no doubts about his competence and skill, just not a very "people person"?
Anyway, for better or worse I have decided to try having an endostim inserted. If that does not help, I can always come back to fundoplication.
I have "sensed" that there are some very good and forward thinking gastric surgeons at Southampton. I believe they either did, or were due to do a sham trial of endostim??? Could not find out any results from that, but have looked at all the results I could find from Germany; New Zealand and Argentina, plus have email corresponded with several people who have had endostims inserted. Generally very good outcomes SO FAR, with only two with poor/disappointing results.
Cheers for now.
Barretts nfa
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Tim considers endostim very promising. I'd love to find someone who has had it and can give their feedback.
nfa Barretts
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I think I can help you with this.
If you would give me an email address I can let you have contact details for
several people who have had endostims fitted and I am pretty sure will be very happy to give you an account and answer any questions you have, especially if you explain that you are writing a book and want to include direct patient feedback about endostim surgery/therapy.
One of my contacts was the first to have an endostim in the UK, and there is a small Daily Mail article about him if you go to Google chrome or other search engine, and put in: "Pacemaker for your tum that eases heartburn", which should give you a link to the Daily Mail article in the "Me and my operation" series. He seems very committed to helping others with GERD.
Three of my five main contacts have done very well, and of the other two, one feels no difference after about a year, but has had a recent adjustment, the other has had no improvement after many adjustments, but may have some viral neurological damage to the vagus nerve.
Anyway I will be happy to give you their contact details via a private link.
Hear from you soon if you would like to pursue those possibilities.
Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.
http://patient.uservoice.com/knowledgebase/articles/398331-private-messages
nfa Barretts
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I tried to find you on Facebook so I could send you a private message, but no luck. This site does not seem to have a "private message" facility? I was going to give you contact details for five of the people I have corresponded with who have had endostims over the last four years to help with that section of your book.
You will understand that I do not feel I can post their details on a public site.
Would a letter to Barretts Wessex get to you at number 6, if I mark it for attention of C R? Let me know if that is a possibility in case my earlier post does not get released to you.
In the meantime, in case you do not have it, go to your search engine and put in: "Pacemaker for your tum that eases heartburn" which will hopefully give you a link to a Daily Mail article in their "Me and my operation" series and is a brief article about the first person (I believe) to have an endostim fitted in the UK.
Cheers for now.
Barretts nfa
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Yes I have the link to the Daily Mail article on the charity's website. Chris Sutton was the first UK sugeon to implant endostim.
Thanks
mick20498 Barretts
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Like you I'm a bike rider but have found that rigorous riding seems to raise my acid levels, so have had to cut back, but after reading of your posite experience with Fundoplication, I'm seriously considering that as an option. I really want to ride the Bi-Centennial Trail in Australia before I die. Got the bike, panniers and everything else ready. Just waiting on the gut.
Barretts mick20498
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The entry from my book says:
"There have been many studies into the medicinal properties of cannabinoids (eg marijuana) with many on-going around the world presently. Beneficial properties are being found particularly in areas of pain relief. Like Peppermint, the benefits of the drug are as a muscle relaxant.
There are many claims made for benefits of the drug on gastric problems. MedicalMarijuana claims,"Research suggests that cannabis is effective in treating the symptoms of these GI disorders in part because it interacts with the endogenous cannabinoid receptors in the digestive tract, which can result in calming spasms, assuaging pain, and improving motility. Cannabis has also been shown to have anti-inflammatory properties and recent research shows crucial neuromodulatory roles in controlling the operation of the gastrointestinal system, with synthetic and natural cannabinoids acting powerfully to control gastrointestinal motility and inflammation." but, although a list of references is published on the site, it hasn't been possible to find the paper this quotes." I would have thought a muscle relaxant could make reflux easier. For me it was the reflux, rather than the acid, that was the probelm.
Cancer Research UK have a number of programmes on-going studying medical properties of marijuanna. They issue this advice: "Although centuries of human experimentation tells us that naturally-occurring cannabinoids are broadly safe, they are not without risks. They can increase the heart rate, which may cause problems for patients with pre-existing or undiagnosed heart conditions. They can also interact with other drugs in the body, including antidepressants and antihistamines. And they may also affect how the body processes certain chemotherapy drugs, which could cause serious side effects."
I don't need to try cannabis.
But good luck with the cycling. I don't go head down in racing position - I'm a distance cyclist rather than a sprinter. (Sounds like you are, too, if you're thinking of the Bi-Centennial.)
mick20498
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A few days ago I decided to stop the cannabis at night just to see where I stand without it. During the second night of abstinence the acid returned with a vengeance and I've had to resort to taking Rani's and Mylanta for the last couple of days. So looks like I'll have to get back on cannabis again, which I don't like doing everyday as it interferes with some things I like to do. This refux is like a ticking time bomb.
It may also be a good option for those acid refux sufferers who suffer anxiety and depression and want to get off their meds. As we now know, an unhealthy gut can cause all sorts of mental woes.
I talked to my doctor about having a Funderplication but he said it's only for those with a hiatus hernia, which I don't have. I'm wondering if he's right or do I need to start looking for a new one.
Cheers
Barretts mick20498
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Don't know why my post is tsill being moderated. I didn't actually post any links. I know when I do post links the moderators need to check them out but always then permit it through. I sometimes cut and paste some text into a post and it often goes for moderation automatically then.
I don't keep a copy of my posts so will have to try and construct it again - or the post may be approved when the moderators get back to work after the weekend.
Barretts mick20498
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It is a muscle relaxant so its use for reflux may be questioned. I haven't tried it and don't need it as, following reflux reduction surgery, I don't need medication.
I don't have much faith in your doctor if he thinks you can only have fundoplication if you have a hiatus hernia. Unfortunately, many GPs don't have sufficient knowledge in this area. You can't expect them to be experts in the thousands of different complaints they have to deal with.
Your gastroenterologist should be more knowedgable and he could refer you to a surgeon to discuss?
Fundoplication is being suggested as an option instead of lifetime PPIs by NICE. They have produced an Option Grid which they gave me permission to include in the Down With Acid book. Find DownWithAcid org uk and you'll see it's appendix 2 at the bottom of the Contents (home) page.
It's intended by NICE you can print this out to take to your doctor to discuss the pros and cons.
Emis_Moderator nfa
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See http://patient.uservoice.com/knowledgebase/articles/398331-private-messages
angie43 phyllis10549
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nfa Emis_Moderator
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mick20498 Barretts
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Cannabis definitely helps. I sometimes wonder why it doesn't loosen the LES, when as you say, it is a muscle relaxant. At the start of this journey I had acid in my lungs one day and was freaking out a little. A mate gave me a Valium and the acid went away. As Valium is a muscle relaxant too, it makes me wonder what is really going on. On bad acid days a half a 5 ml Valium gives great relief, at least for me.
I love my bikes. I've been into downhilling, Free-ride and Trials for years but will have to stick with cross-country in the future I'm afraid. I'm not sure what initially caused the reflux but I suspect it may have been caused by an impact injury. I did see a Naturopath who advised Melatonin 3mg for a couple of months. Is supposed to lower stomach acid and strengthen the Lower Esophagus Sphincter. There's lots of research being done into melatonin and gut issues. The melatonin was definitely on track to fix my gut but then a big bike crash started the acid again, this time with a vengeance. So I definitely know the last crash caused the reflux to return. I've tried telling doctors and a specialist about this but they just aren't interested in pursuing this line of inquiry, instead they just pushed drugs at me. I've learn't over time to keep the acid at bay but it sometimes returns like a thief in the night. I'd be interested to hear your take on impact injuries and acid reflux.
Cheers
Barretts mick20498
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mick20498 Barretts
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Thanks in advance.
Barretts mick20498
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Fundoplication reduces reflux and the associated problems with the oesophagus including Barrett's Oesophagus and, though not performed with this intention, it has been shown that it reduces the risk of progression to oesophageal cancer, too.
In my case, it was essential to reduce progression of refluxate and extra-oesophageal reflux.
Whether the fundoplication will stop your waking nausea, I don't know. You'll need to discuss this with your consultant and try to determine its origin.
david61512 Barretts
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I done the 10 miles ok but only 3 miles before having to walk run walk run and came in about 1:57. The additional 3 stones didn't help but I have a target for next year. Lose 3 stones.
karlosso angie43
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Hi angie43 I am so glad I have found some one with the same problems as me it's the worst operation in the world and the failure rate is silly I am taking action against the NHS and the consultant as I was told none of this.if I had been told this there is no way I would have had this done I am gunna demand it be reversed
alon Barretts
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Wouldn't the advantage of LINX be that it is reversible,and that if it doesn't work,you haven't sunk all your ships yet?Side effect profile wise,unless you are more likely to need MRI than average,would it not be better than Nissens --being less invasive,
specially if your indication is for trying to stop medication,and your symptoms are relatively minor such as LPR or some such.Does anyone know if endostim is available on NHS?
Barretts alon
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It seems a pretty poor recommendation for something that if it doesn't work it can be undone. Much the same as buying a Ferrarri but if it doesn't work you pay the salesman to take it back and then pay again for a cheap reliable Ford?
But, if necessary, a Nissen fondoplicatin wrap can be undone anyway.
And, as for being less invasive surgery, both require 5 puncture wounds and insertion of laparoscopic instruments to perform the operation. Nissen wrap also repairs the hiatus hernia so takes slightly longer and may require a more skilled surgeon.
I wouldn't call LPR a minor symptom. It can lead to pneumonia, bronchiectasis, pulmonary fibrosis and a host of other ENT problems.
Linx is a good alternative for someone who has no HH, no Barrett's and just gets acid reflux - but is not without its own complications.
Although surgery usually means you will no longer need meds, the two treatments actually are for two different things: the medication reduces acid and the surgery reduces reflux.
Endostim is still undergoing clinical trials. I can put you in touch with a surgeon in Southampton who does it.
alon Barretts
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Hi,
I depend on my voice for a living,and hence surgeons have been dismissing it as overuse.Having spent weeks of total silence with similar symptoms,morning dryness,and finding (minimal)levels of pepsin in my saliva by pep test,convinces me my chronic sore throat is due to LPR.Gaviscon may be helping by soothing/coating the throat even without any acid/alkali/bile reflux,but constant use on top of PPIs gives me diarrhoea.Funnily enough apples and chocolate help in daytime soothe,although chocolate at night makes things worse the next morning.Ph manometry is largely normal,hence the urge to dismiss any LPR hypothesis.After 10 years of struggle though I am ready to take the plunge of the knife but surgeons aren't convinced about solving the sore throat which to be honest is 95% the problem.If I was having other untreatable symptoms of GERD,I'd agree that Nissens would be the best answer.Given LPR is only evidenced by sore throat,morning dryness,and pep test which NHS is sceptical perhaps LINX is an option,if they offer it.