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Old 02-14-2013, 03:48 PM   #1
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littlesocks HB User
LPR - surgery and gastroenterologists and a request for positivity

Well this LPR is quite the nightmare.

I have been diagnosed with LPR by an ENT specialist. My gastro has prescribed me PPIs - all of which have given me terrible side effects. I am interested in finding out more about surgery but my gastro isn't willing to talk about it or to do any tests. If anyone can anwer any of the following questions, I'd be very grateful:

1. My main symptom was throat pain but now it is shooting pains in my ears and head. Does anyone else have this? It's utterly debilitating and miserable. I had to convinced my GP that LPR can affect the ears but he wasn't having any of it until the ENT concurred. I cannot tell though whether the pain is really coming from these parts of my body or are being referred from elsewhere.

2. I have read that the issue with LPR is the UES not the LES, in which case, I don't quite understand how the fundoplication/wrap to strengthen the LES would really resolve the problems.... Does anyone know why this would help? And what can be done for the UES or to check the function of the UES?

3. Is a weak valve the only cause of LPR?

4. Has anyone in the UK had successful surgery for LPR and if so, is anyone able to recommend a good surgeon? Or if anyone could recommend a gastro who knows anything about this, that would be great.

5. Has anyone been refused surgery and if so, on what grounds (other than financial)?

6. There seems to be a lot of debate about whether the problem is too much acid (low acid diet) or not enough acid (take apple cider vinegar). Does anyone have any thought about these different ideas?

7. Has anyone successfully resolved their LPR without taking medicines?

Please please, no horror stories! I can' take anymore! Some positive stories would be nice.

x

 
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Old 02-14-2013, 11:50 PM   #2
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BrienE HB UserBrienE HB UserBrienE HB UserBrienE HB User
Re: LPR - surgery and gastroenterologists and a request for positivity

Hi littlesocks,

I'm sorry you have to deal with this. There are many going through it and wondering about how it really works. My opinion is the term "LPR" is misleading and also I am not personally satisfied with the explanations for throat discomfort simply caused by reflux.

It could certainly be in part just in the sense that burping and acid vapor might have a different effect once the laryngeal/pharyngeal tissues have changed for whatever reason, and there are neurological dynamics too... more or less, we are on our own figuring it out I think. Acid reduction might be good, but there are med issues exactly as you described, and it's a sideways fix. Your LPR is most likely not from your stomach producing abnormally high amounts of HCL.

That said, in my journey through this I have found that stress alone from hyperfocus on throat and frustration that there is no easy fix, is itself a trigger to poorer digestion including perhaps more "TLESR" and if you know what that stands for, then I rest my case. Viscious circle there and it can only help to take it easy with a low acid diet, light tummy (never fill the tank up, 50-70% tops) and whatever else. Do you like Kombucha? I find it very refreshing and the probiotics, supposedly in it are a good thing.

1. I have read of that a good bit. I have 'mildly boggy' turbinates and would say my eustation tubes are more usually in a lightly sealed up state until I kind of squeeze them open more, telling me I might have more inflammation in my sinuses linked to abnormalities in the pharynx and larynx and irritants. No bad ear stuff though.

I think there might be an explanation for some pain in the sinuses and I'd be concerned there are no infections-- but if ok there, consider also any hyperfocus/nervous feedback patterns with inexplicable pains, in my case I had to re-train my attention to other things in life to resolve any number of 'weird' symptoms. Now the LPR remains, better controlled as I work to resolve it for good. I have a tendancy to overfocus (which is why I stay away from here), so I can help all manner of stuff to arise in my nervous system from getting anxietal.

Do you also have some phlegm constantly after you eat? I think the mucous tissues form a large network from throat into head in inflammation responses and this could be connected to sinus symptoms.

2. I'm with you, and indeed most of the reports I see of fundoplication or even the newer endoscopic LES procedures intended to quell LPR are not positive. There are issues from it used even for classic reflux. For my level of problem, I think: nope -- don't need to be creating another. I am not surprised your GI doc is reluctant at this point on surgery, however he or she is probably following a treatment plan. You might be allowed some tests after a PPI trial if you persist.

It's been a number of months since I hit healthboards so I don't know how it's going with the trolling and removing of posts that seem too specific to proper names but see what returns on a query for exercises for the UES. There has been some success with that, but they are not targetted to LPR rather swallowing disorders where the crico-whatchamathingie muscles and band (UES) are strengthened for swallowing. No one I know of has ever gone the distance doing these surprisingly tough exercises every day over weeks to even see what happens for LPR. Fresh territory. Tough work!

In any case I think this is a significant piece and I've lately been interested in chiro, massage, neck posture and treating any structural aspects.

A swallowing test is one way to check the UES, or at least a swallowing problem was ruled out for me when I had a 24 hr ph test. There are visual tests of swallowing. I think that in our day and time many tests are not very conclusive and sensitive enough. I think you are likely to be told your UES is keeping food pushing down into your esophagus and working fine. I've never heard of a probe or monitor though for say, "TUESR." They oughta have that and establish a baseline... you might ask if such a thing exists.

3. What is called LPR to me is about nerve pathways along the upper digestive tract and irritation to the larynx and a constellation of dynamic issues, so without ruling out the 'valves' either, there is a whole syndrome of stuff.

4. and 5. Pass on these I'm in the US also never wanted surgery

6. I tried ACV as well as HCL and Pepsin supplements, no good effect on the 'too little acid' theory. I also ate a lot of PPIs going the other way. Currently none of the above and in fact, I don't even take a single vitamin now. It was not good for me to have a regimen of supps and medication.

As I shared, real classic reflux can go with this simply as a stress companion if it isn't a central culprit. I do have very clear ideas of a low acid diet being better for me for many reasons. I lay off all dairy except for butter and occasional ice cream. I try to tone down sweets, and lately animal protein. Chocolate can be a trigger. I find lately that Buckwheat (Kasha) in the morning with steamed veges I keep in packets in the freezer is a no-reaction breakfast and not too bland. It was a little weird to eat like that first thing, but getting some nourishment with no clenching or irritation in my throat is wonderful! My terrible habits continue which include sometimes waiting too long to eat and coffee... but lately the coffee gives me no problem.

I eat gluten free too as often as possible, which should tell you I'm not Celiac but it's more to do with a bit of a bloat response to wheat and gluten. Already shared about not too much load in the stomach... more alkaline diet means also less bloat and pressure... treating any gut inflammation is good.

7. When I see discussions of PPIs and such with LPR, I find only rarely do people write that they succesfully resolved it with the meds. They seem to exist but there are a lot more folks who've been hooked on Nexium etc for years still frustrated.

I would say for myself, what I've been sharing with you is keeping me hopeful and in discomfort less and less. And again I don't take a single pill, nothing...

Hope this is helpful! Wishing you well--

Brien

Last edited by BrienE; 02-15-2013 at 02:18 AM.

 
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Old 02-15-2013, 07:35 AM   #3
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littlesocks HB User
Re: LPR - surgery and gastroenterologists and a request for positivity

BrienE, thank you so much for your thoughtful reply.

I would be prepared to go without meds and find other ways to cope were it not for the immense ear and head pain. I would be willing to try surgery although I realise there are risks and indeed it doesn't always work and could worsen the situation. However, at 32 I'm not sure the long-term solution for me is diet and lifestyle (I never smoked, drank, ate spicy foods, carbonated drinks, caffeine etc. and I've never been overweight) or meds since I can't tolerate them. I am partial to a nice bit of chocolate and cake though. What is a life without chocolate?

I have some clicking of my sinuses but no discharge and I have been inspected by an ENT who didn't mention any sinus issues although I will look into that again.

Too much acid, too little acid, pyloric valve, H Pylori infection, UES, LES, nerve issues etc. It's difficult to know what could work without knowing what the cause is. The nerve issue is an interesting one. I have noticed recently more hiccuping and also occasional stabbing nerve pain which seems to run from my bladder right up to my stomach. Perhaps a vagus nerve issue. As you say, hyperfocus on it doesn't help but it's so hard not to do!

I did have very bad phlegm, PND and throat clearing at the end of last year then I started a PPI and those symptoms seemed to subside quite rapidly.

I will have a look into Kombucha, the UES exercises and also neck posture. Many thanks again for sharing your experiences.

 
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