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NEED ADVICE SERIOUSLY CONSIDERING LINX FOR LPR AND GERD

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Posted 8/1/2012 10:43 AM (GMT 0)
 Hello All,

I need advice of those who know Gerd/Lpr nuances well enough to give opinion on my situation.

I'm 34 y o female living in Holland. It all started in March 2012 with very bad stomach ache for which my GP gave me Omeprasol. After taking it for 1 week it did not help and I was put on Nexium.

While on Nexium I got extreme burning nearly everywhere - in my chest, throat, back, arms. I thought I was going insane from pain. The burning was 24/7 and I could only sleep for 1,5 at night. I stopped my study that I loved as I was physically suffering.  I could not understand what was going on with me. The EGD in diagnostic centre showed insufficient cardia, no erosions. I was told to continue PPI and assured that the burning would stop. It did not. I was continiously suffering. In mid March I asked for a referal to GI as I could not tolerate the pain. They told me my case was not urgent and that I can only see the GI on the 19th of June! I lost 7kg in a month as I eliminated all the known trigger foods and was generelly weak from pain.I did not know what to do as I could not see a specialist.  

Finally I decided to travel to Moscow to find answers to my sufferings. The GI I saw said it was a psy issue and that I should just relax. I insisited on more tests but she laughed at me and said 'Ok if you want to be sure you are fine, get a Barium Swallow'. Barium swallow showed no pathology which made me think that probably the doc is right esp because I had a major stress in December and that could have hit my nervous system. All blood tests were OK.She also said that if I had gerd I would ve responded to PPI. Worth mentioning that I had never had known what heartburn felt like in my life anytime before.

Anyhow after being told that the problem is in my head I went back to Holland. I stopped PPI as I was advised and was put on Paxil (AD to calm down the nerves). Result was that I was still sufferring from the constant burn. My chest, back, throat and tongue were constantly on fire, the neck was stiff, ears clogged, vapour in my knows, red eyes. I felt it was physical and not in my head.

So went back to Moscow for definite answers this time. I had EGD, Impendance - Manomentry, Motility and blood work. My Impendance came up with Demeester score of 89!

EGD showed insuffiecient cardia, NERD, motility was OK as well as the resting pressure of LES and UES were OK. The docs advice there was to have 2x20mg Pariet, Motilium, and Gaviscon, lifestyle changes. I did it all for 2 weeks with no results.

The next step was to have Impendance on PPI. The Demeester normalised, but it still showed nightime breakthrough and weakly acidic reflux for 78% of time.

I asked the doctors if weakly acidic reflux could still cause my symptoms, some said yes, others said no. I saw a professor specialised in gerd and he said my condition was inflicted by stress and yes weakly acidic reflux could cause symptoms. So their final word was that I had NERD and visceral hypersensitivity. I was prescriped Mirtozapine for the latter.They were not so much interested in my throat even though 4 otolangologists said my inflammed tonsils were from reflux. 

 I inquired about the surgery as obviously PPI were not helping me with the symptoms. Surgery was disadvised even though I was told it would eliminate my symptoms. I know that Fundo is very invasive and I would not want to have it esp because I do not have a hernia. At this point of time I am leaning towards LINX as it is less invasive and reversable.

I contacted UK facility and they said that based on my tests I am a good candidate for LINX.

After nearly 3 months of PPIs I feel slight improvement in my condition but it is not at all sufficient to go back to my normal activities, my throat is killing me 24/7 and I personally blame it on weakly acidic (pepsin activation?) and night time reflux breakthrough.

So far I have tried everything and it has not been working, it feels like my throat gets sore time after time again and just cannot have the possibility to heal as long as it is subjected to the weakly acidic reflux.

I want to give LINX a shot as I cannot go on like this anymore, but I am also scared of it. Any ideas?

Thank you.

 

Posted 8/1/2012 3:45 PM (GMT 0)
You may be the only other person on here I've seen mention NERD. I was diagnosed with this myself. Significant amounts of reflux, however they were non-acidic with PPI use. Unfortunately, NERD was just as painful as GERD, and I experienced horrible chest pain daily for over a year.

I had the Nissen done in November, and I feel incredible now. My symptoms have all been resolved. I know the Nissen sounds scary, but it's not really all that more invasive than a LINX (I personally think its less invasive as there is no foreign device implanted), and in the extremely rare chance that its needed, it is reversible as well. There are LINX success stories here, so I really hope you find success with it.

I know how bad NERD can be, and how resistant it can be to any treatments. I tried every medicine and natural remedy you could think of, significant diet changes, weight loss. Nothing really helped until surgery.

I wish you the best!
Posted 8/1/2012 5:58 PM (GMT 0)
I also believe I have NERD. Some people I know with erosions have less painful synmptoms than I do.  A lot of them take a PPI and they are all good.
Posted 8/1/2012 8:24 PM (GMT 0)
Hi, my names James, and just wanted to share my experience
In the hope it may help... I have suffered with a similar condition for last 5 or 6 years... It was at it's worst 2 years ago, when, like you I was up most nights for weeks with excruitiating chest pain, which felt incredibly unnatural. I had all sorts of tests done but was just put on nexium, which didn't really seem to help.Like you it was most definitely not in my head!

I have been much better over the last year and I now believe that my case was stress related (although appreciate this may not be the case with everyone) I am an architect in a very stressful job, and worry about things far too much (both professionally and personally). Living in the 21st century is bloody hard work!!! I basically just lost the will and turned into a bit of a party animal for a while, which ironically I believe (for me ) was the cure! I hope this doesn't sound patronising or in anyway belittling of your problems (because trust me I know how painful and debilitating it is) but my recommendations would be to take all pressure off yourself for a good three months, enjoy yourself as much as possible, see friends, relax, go on holiday and don't think about it at all!

I appreciate this sounds like slightly dubious advise but felt it beneficial to share , as would hate to think of anyone going down the surgery route if there is another way round it!!

I still get it return every now and again, and think it's one of those things that will probably never go away, but I use it as a sign that I need to have fun and chillout!

Good luck and hope you get better :-)
Posted 8/1/2012 10:56 PM (GMT 0)
wow, I'm going through the same situation since March, and I'm only getting worse on double dose of PPIs plus carafate and zantac. The endoscopy showed gastritis and mild esophagitis and the barium test showed no reflux. I didn't understand why I'm burning so bad even on high doses of PPIs since my results were not that bad. My esophagus is burning and feels tight, my stomach is burning and feels raw. I can not even sleep on my stomach or sides from the pain. There is no end to this disease. Should I stick longer on the medicine? I had this a few year ago and the PPIs helped me and the esophagitis went away after 3 months. This time nothing works. My next step would be the bravo test and I'm also looking into the LINX surgery. Anybody has any info on James D. Luketich, MD at University of Pittsburgh?

dany
Posted 8/2/2012 3:18 AM (GMT 0)
Dany, sounds like you and I are twins. My endo showed mild esophigitus only also and I still get symptoms on nexium 40 mg, gaviscon and rigid diet. All tests came back normal so far. Still have to do Bravo and Mamotry. Think we may have NERD which is a type of GERD that is hard to treat. It stands for non erosive reflux disease. People with NERD have either normal or mild endo but do not respond fully to ppi drugs, diet and lifestyle changes. They can have worse feeling symptoms than people with erosive esophigitus.
Posted 8/2/2012 3:40 AM (GMT 0)
Going through the Bravo or 24hr pH/impedance (what I had) while on PPIs will help determine a diagnosis of NERD if significant amounts of reflux that are non-acidic are detected. I recommend one of these tests. While I was glad to have a diagnosis, I was told by my doctor that in his experience, NERD is extremely difficult to treat, and the best treatment he's seen is surgery. For me, he turned out to be right.
Posted 8/2/2012 3:48 AM (GMT 0)
I already talked with my dr and I'm doing the bravo on PPI mostly because I do not think I can function at work stopping the med. But I think I have NERD so it works out. Trying to avoid surgery but I'm starting to accept that I may need it.
Posted 8/2/2012 11:09 AM (GMT 0)
NERD is the same thing as LPR, alot of members here have it. Don't let the doctors fool you nerd/lpr does just as much damage as gerd. NERD/LPR is non-acidic reflux, so instead of acid doing the damage (gerd), it's the pepsin doing it (nerd/lpr).
Posted 8/2/2012 2:22 PM (GMT 0)
ericapeace2000

why you are not trying two ppis a day? maybe you will improve. I'm getting bad side effects from them, and for me its very hard to stay on them, but I was trying to avoid surgery. When are you doing the bravo test? I didn't do it until now because my esophagus burns so bad that I was afraid the bravo will make it worse. I just hope it will show what is going on with my stomach.

I still haven't decided on a date, because I was having a few good days, but then suddenly it got worse.

Posted 8/2/2012 4:03 PM (GMT 0)
The funny thing is I do not have the symptoms of LPR at all. No problems with breathing, throat, acid taste in mouth, sinuses, nothing. Symptoms stop at my chest. My main problems are upper stomach pain and chest pains felt through my back, some mild heart burn here and there. I do have mild esophagitus. I will have to do the Bravo test. When I see my doctor next, I am scheduling it. My doctor does not want me to take 2 ppis yet because that is a lot of medication and he wants to see what the issue is first. Since I have been improving somewhat, he wants to see if I continue to improve. I use Gaviscon as needed, that helps.
Posted 8/3/2012 10:16 PM (GMT 0)
Thank you all for your responses. I did not expect such a quick feedback. It is sad that so many of us have to deal with LPR GERD or whatever related.

JPT special thanks to you for such an extensive reply on two threads. Really appreciated.
I have a question to you since yout transient LES relaxations were the culprit of your LPR as well. I am trying to understand the mechanism behind LINX which seems simple at first sight but what is not clear to me is the following:

Does LINX prevent transient relaxations at all or reduces their amount to a normal range? In my understanding since LINX is a device it makes sense that it would prevent all transient relaxations and will only open in response to food, saliva and other stuff like that. However they say you can still belch with LINX. Is not belching provoked by the same transient relaxation that give reflux? So the bottom line is how on earth the device knows the amount of times it is allowed to relax for belching?
And then if belching is possible would not it be equal to refluxing and damaging the throat? How do you see it?

JPT also I read you had respiratory problems that fortunately LINX has taken care of (very happy for you!), did you also have discomfort in your neck or throat? My neck gets so stiff, it hurts to turn it but I do not cough and breathing (touch wood ) is OK.

Now because I am back to Holland my GP wants me to go to a local GI and swallow a BRAVO capsule, I said to him why BRAVO if I had IMPENDANCE in Moscow. He did not even know what impendence was and insisted on BRAVO...what a waste of time!

BOWECHO How good your NISSEN was a success! It looks you only had NERD and no LPR. I guess you were lucky with the doctor, from what I heard NISSEN surgery is normally indicated for erosive form of reflux and hital hernia. Did you have a HH?
I've already had all the tests, and while on PPI I have weakly acid reflux which is still causing the problem.


ERICAPIECE2000 Yes, I am starting to accept the idea of surgery as well which is understandable after 6 months of uncontollable constant pain. Why are you leaning to surgery if the medication is helping you? Or dont they help you enough? What symptoms do you have?

DANY1982 Sorry you are in much discomfort. I really wonder what your BRAVO will show. Let us know.


DOGGBONES I do not think doctors are ''fooling'' us they just sadly do not know much of what they should know.And when you tell them they get annoyed.

I HOPE THAT MORE PEOPLE WITH LINX WILL COME TO THIS THREAD AND SHARE THEIR EXERIENCE WHICH SO IMPORTANT FOR ALL OF US WHO ARE CONSIDERING LINX.
Posted 8/4/2012 3:06 AM (GMT 0)
The nexium helps but I'm still in pain dedpite meds, diet that is rigid and lifestyle changes. My symptoms that are the mist bothersome are: upper stomach pain that comes and goes, chest pains sometimes felt through my back, mild heartburn that comes and goes. I have made some progress over the past 5 months on the rigid diet and medication change but it us very frustrating to be doing all the right things only to be suffering. I went from a size 8 to a size 2 due to the diet changes. I basically list 20 pounds in about 3 months. I'm just frustrated that I am being super careful yet I'm in pain. Granted much less pain. My fear is that instead of making more steady progress that I have just hit a plateau and this is the way it is going to be. Pregnancy also scares me as I feel like if I make progress, I may be set back due to pregnancy. I still am not sure if I am even a candidate for surgery. Gotta get the tests done. Ugh.
Posted 8/4/2012 3:17 AM (GMT 0)
Hello Story, did you ever take the mirtazapine? If your condition was triggered by viral damage, due to the gastroenteritis you described, to your vagus nerve (the vagus controls the LES), I wonder if this drug would help with it.

The device that JPT mentioned, EndoStim, is already available in your country. You can read about it here, www.endostim.com/international/

Post Edited (flux) : 8/3/2012 9:36:15 PM (GMT-6)

Posted 8/4/2012 4:32 AM (GMT 0)
I do have a very small hiatal hernia, which the surgeon determined was not big enough to even fix. My symptoms before surgery were a combination of the NERD and LPR, LPR symptoms being the globus sensation in throat/post nasal drip/throat clearing/swallowing trouble. The surgery resolved these issues, although sometimes I do have the throat clearing/post nasal drip, not nearly as severe, but that may very well be just allergies. Our form of reflux is rare, so definitely more surgeries for erosive reflux are performed, but many of us here have had it done for LPR symptoms.

I'm surprised I see so many mentions here of the Nissen not being reversible. My surgeon told me that while very uncommon, reversals are possible and are performed. We've even had a couple of people with reversals post on this board before.
Posted 8/4/2012 3:51 PM (GMT 0)
what is the EndoStim? Is it available in the USA? I never heard of it.
Posted 8/4/2012 4:10 PM (GMT 0)
EndoStim is a company making an implantable pacemaker for the lower esophageal sphincter (LES). Reflux occurs when this sphincter inappropriately and spontaneously relaxes, the so-called tLESRs. From what I understand, by merely sending electrical pulses to the LES, it stops doing this, but works normally otherwise (e.g., for swallowing, vomiting). I believe it has been given to about 50 people with GERD with apparently excellent results. It is being tested in two clinical trials for FDA approval in the US, but it appears to already be available to the general population in some countries, namely Chile, India, Hong Kong, and the Netherlands.
Posted 8/4/2012 4:22 PM (GMT 0)
I would be careful with antidepressants, I tried Amptriptiline and Xanax and I woke up with my esophagus and stomach on fire.

Endostim sounds promising, do you know when the FDA expects to approve it?
Do you think it will improve a weak LES also, or just stop the relaxation of a good working LES.
Posted 8/4/2012 5:39 PM (GMT 0)
The end dates for the studies are April 2013 and April 2014. I guess it wouldn't happen until the second study is finished, but asking the company would be best way to get an answer. I imagine by that time, it will be available all over the rest of the world.

As for the "weak" sphincter, it isn't that the muscle itself is weak, but the (vagus) nerve signal is. The pacemaker is adjustable, to provide the right input to the sphincter so that it contracts with normal force. The following video explains this: www.youtube.com/watch?v=r_Q8-Gm6Svg, but it is shows the device being implanted, and so is pretty graphic. shocked

Just curious how long you were on the amitriptyline. Amitriptyline having anticholinergic properties should, in theory, reduce the vagal input making the sphincter even weaker, but simultaneously, it blocks nerve pain and may improve the function of the vagus in general, but I think it may take some time before that effect kicks in.
Posted 8/4/2012 6:11 PM (GMT 0)
I took it just one time, and when I woke up in the morning I was on fire, so I stopped it.
I tried it because I thought that my pain can be from nerve sensitivity, but it looks like its definitely from acid coming up despite the ppis
Posted 8/4/2012 9:03 PM (GMT 0)
My new GI has put me on amitriptyline.

It seems to be helping me with my ability to handle PPI side effects. So, I am taking 10mg/night of amitriptyline followed by 20mg/day of Aciphex in the morning to manage my symptoms.
Posted 8/4/2012 9:09 PM (GMT 0)
If it would not bother my stomach and give me more heartburn, I would continue taking it, but for some reason my GI system is very sensitive now and I can not handle a lousy vitamin, so for me any pill that I take makes it worse. I would love to be able to continue taking it, as it was helping me sleep better. Lucky you are not that bad and can still take it.
Posted 8/4/2012 10:58 PM (GMT 0)
Hi all,

I am going on holiday for 2 weeks and wont be able to post but I'll come back and continue.

Does anyone of you know more people who got LINX and are doing fine esp with LPR? I saw some on other threads but I am sure there must be many more. Ah why dont they post on healthboards, we need them so much. I have been doing everything to feel better and I lost so much weight with the diet, I had nothing to lose in the first place and I am still in constant pain. How is that possible?

I checked Endostim and there is an office related to it in the city I live. I will give them to know more on my return.
JPT and FLUX mentioned it is managed by a remote controll by the doctor depending on the life style/regime of the patient. I dont quite get it, why cant the patient do it him/herself? Does anybody understand it?
Posted 8/4/2012 10:58 PM (GMT 0)
Hi all,

I am going on holiday for 2 weeks and wont be able to post but I'll come back and continue.

Does anyone of you know more people who got LINX and are doing fine esp with LPR? I saw some on other threads but I am sure there must be many more. Ah why dont they post on healthboards, we need them so much. I have been doing everything to feel better and I lost so much weight with the diet, I had nothing to lose in the first place and I am still in constant pain. How is that possible?

I checked Endostim and there is an office related to it in the city I live. I will give them to know more on my return.
JPT and FLUX mentioned it is managed by a remote controll by the doctor depending on the life style/regime of the patient. I dont quite get it, why cant the patient do it him/herself? Does anybody understand it?
Posted 8/4/2012 11:03 PM (GMT 0)
FLUX thanks for the info about Endostim, I will contact them on my return here in Holland and will let you know. I am not sure if it directly available though as I saw they are recruiting volunteers in Chili for studies. Still I saw they welcome us to contact them in Holland as there is some research going on over here too. What makes you think they have got excellent results so far? I have not seen it anywhere yet. Gee I hope something works in the end whatever it is LINX, Endostim etc as long as it brings results!
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