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drtinsac journal - GERD/LPR - extremely long

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GERD & Acid Reflux
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Posted 11/15/2012 6:44 PM (GMT 0)
MGDawg,

If your insurance covers it and it's available in your area, I highly recommend having the Restech test. My 24hr pH/Impedance resulted in a ridiculously low DeMeester score of .2 but my Restech results showed much higher abnormal values. If anything, at least it'll confirm what you already know.
Posted 11/15/2012 7:13 PM (GMT 0)
Thanks a lot for the feedback Rockhopper. So, when you say "much higher abnormal values", what was the diagnosis? Are you on the 2xday PPI regimen, or have you been working on something else to help you along?

I have no idea if it's covered anywhere near Atlanta, but I plan on looking around very soon (this is the first I had heard of it a few days ago). What I would love the most is to be done with this stuff and feel normal again, but confirmation of exactly what the problem is would be almost as important. Thanks again. Good luck w/ your stuff.

-MGDawg
Posted 11/15/2012 8:12 PM (GMT 0)
Here are my results:

My upright RYAN score was 18.85 with a normal value below 9.41. Supine RYAN was 12.85 with a normal value below 6.80.

The majority of my events are supine related. Median pH 6.2876 - Minimum pH 4.139 - Number of pH events 26 (21 supine)

Compare this to my 24 hour pH:

Acid reflux: 0 normal below 55
Weakly acidic reflux: 10 normal below 26
Nonacid reflux: 0 normal below 1
Upright: 0
Supine: 0
DeMeester: .2

All I did was contact Restech "[email protected]" and asked if there were any physicians in my area providing the test. They responded the very same day. As a matter of fact, the COO was the responder.

Here's a good link that explains the test in greater detail:

http://www.slideshare.net/nroucher/restech-presentation

This all started for me about four months ago. I'm now on the usual "2X day PPI and before bed Zantac". This isn't really doing much for me and I don't feel very well on the PPI. I've been eating organic whole foods for many years so trying the Dropping Acid diet wasn't difficult. It helps a little but not enough to really enjoy every day life.

I haven't had a beer or coffee in four months and it's absolutely killing me! cry

Recently I cam across a few books from microbiologist, Dr. Norm Robillard. He claims to have cured his own GERD by following a controlled carb diet to prevent and reverse bacterial overgrowth in the small intestine. He believes that consuming excess carbohydrates results in bacterial overgrowth and significant amounts of gas (hydrogen, carbon dioxide and in some cases, methane). This makes sense to me as this would contribute to intra abdominal pressure causing aerosolized reflux. I'm going to run this by my ENT. If he's on board I think I may try weaning off the PPI's while trying the diet.
Posted 11/15/2012 10:41 PM (GMT 0)
Wow, I'm sorry to hear all this Rockhopper... that's a huge discrepancy between the tests. Thanks a lot for the contact info. I'll certainly reach out and see if there are any local options, as the more information for me, the better at this point.

What are your doctors saying at this point? Is it basically PPIs or surgery? I know exactly what you mean about the diet. I do have a bit more energy when I eat as healthy as I possibly can and stress over it every meal, but at the end of the day, it never seems to have lasting effects, so I'm never sure exactly what to do.

That's really interesting on the carb point. It really does make sense... carbs are more difficult to digest than other food items, but it just blows my mind how often this kind of diet alteration stuff is discussed around the world online, but other than a handful of "trigger" foods, the discussion isn't really brought up in the doctor's office... at least not with the people I've seen.

I feel for you on coffee. I too have been abstaining for months now. I still have a beer (ONE or TWO, MAX!) now and again and it doesn't seem to cause too much trouble, but they're gluten free and so maybe the reduced proteins in the beer are easier to digest. Who knows?

I go back to see my GI for a barium swallow to check for structural issues later this month and then see my ENT in December, so I'll keep everyone posted.

Please keep me updated on your progress as well.

Take care and good luck,
MGDawg
Posted 11/15/2012 11:36 PM (GMT 0)
I had a revelation the other day about the diagnosis of "hypersensitive esophagus" in my case. It can't possibly be, since I do not have esophageal symptoms. I have super or extra-esophageal symptoms, above the esophagus.

This could be why the treatments for hypersensitive esophagus (Elavil, Zyprexa) did not work for me.

My GI, when talking to me about bitter taste, said that the taste was my body creating an alkaline solution to combat "normal" amounts of acid. This cannot be true, because before I had ever taken a PPI, there was NO sour taste. Yet there was even more acid. So if acid was causing my body to create a sour tasting saliva, then before I had taken a PPI (lots of acid) there should have been much more of a sour taste. But in my case, the sour taste only started after I took a PPI and swallowed much less. This seems to support my theory that all the swallowing I was doing before was keeping the sour stuff down. Also, if I force myself to swallow every 10-20 seconds now, I do not have a sour taste.

Posted 11/19/2012 10:10 PM (GMT 0)

Just got back from my ENT visit. I came prepared with a battery of papers to prove that fundo would (should) work. But before I even got to that, he mentioned that the only other thing they could try would be fundoplication :)

I then clarified some symptoms with him, that they were very PPI responsive, and that I had excess reflux #s on ph study. He said the problem with that is they see normals with that range sometimes (he had not seen my exact #s). He said that fundo was well supported to help with heartburn, regurgitation and cough, but for other atypical symptoms he said there wasn't that support. I asked if the sour taste I'm experiencing isn't a mild form of regurgitation, and he agreed that it could be. He said the surgeon would want to know that I have PPI responsive symps, and that I'm willing to risk the complications of fundo. I asked him if I could be very active with fundo, weightlifting etc, he said no problem.

He said he'd refer me to the in house surgeon, who incidentally I'd seen before and who referred me to this ENT. But now I think there is more evidence, and with the ENT's opinion, I hope that will put me in a better place with the surgeon.

Then there is the decision whether to switch to a PPO to have a better choice of doctors. I was definitely going to switch if the ENT said that fundo would never work and he'd not refer me. But now I have a tougher choice. If I switch to a PPO and the surgeon agrees to a fundo, I'd end up paying about $3k out of pocket in addition to about $1200 in higher premiums fo the year. If I stayed on my current plan, an HMO, charges would be much less.

However if I stay on my HMO and the surgeon does not want to do fundo, then I have limited choices and a more sluggish process of getting anything done. On a PPO I could go directly to any surgeon I choose, nationwide. So this is about a $4200 choice, but it could mean quicker resolution to my symptoms, and since I only live once, I am tempted to lose the $4200 to get the surgery one way or another. Any advice on this would be welcomed.

Posted 11/20/2012 1:51 AM (GMT 0)
Great job on the journal, nicely written !! Hope this works out for you ! Not sure where I am going with mine.

I have a question on symptoms associated with LPR, which I believe is my situation. Since most here are discussing reflux mixing with the air in your body don't you get sore lungs from this. I do and that is what has me convinced mine is aerolizing.

If I have a tough day and slip off my diet then my chest is very sore the next day. I do get the hoarse voice as well but feel it a lot in my lungs. That bothers me regarding the long term. I have been very athletic all my life, work out , take care of myself do all the right things and now I feel like I might as well be smoking given what I am likely breathing in. Last year I had a sinus operation because of ongoing issues , now I think it was reflux over the long term which just finally got really bad this past spring. Just diagnosed this year been on PPI's since March, some days are ok , most they don't work very well. I take Dexilant 60mg 1X , add a Pepcid 40mg at about 3 pm and another one at bedtime.

Recently I am finding I have been getting allergy type symptoms, pretty sure it is low stomach acids and proteins are passing into my circulatory system and the immune system is responding. A little sugar and the reflux goes off the charts, a little more and I am itching and scratching including rectal itch. It can happen within a couple of hours of eating. Started taking digestive enzymes hoping to tame this issue and of course stay away from triggers. Claretin helps. Not sure if this has been mentioned but PPI's can create food intolerances thru this method of action , apparently the lack of acid can reduce the digestive enzymes that our systems produce, much like the issues of B12 and Calcium absorption.

Will be interested in your continued journal posts DR ... keep up the good work, doctors prefer square holes and square pegs , with LPR we are the round pegs it seems.
Posted 11/30/2012 6:33 PM (GMT 0)
Good news, just came from the consult with the surgeon. He said that he'd spoken to my ENT and that he thought it would be an option, the choice was mine whether to do a Nissen fundoplication. I didn't hesitate to accept!

They gave me the option of laproscopic or robotic, and the surgeon said that for this type of operation there wasn't much benefit (there might be in something like a fundo revision), and the lap. surgery date was 2 weeks sooner, so I went with that one.

So I'm scheduled for Jan 16. What a relief that I didn't have to recite all the evidence I have that it should help me.

Cheers.

Posted 11/30/2012 6:40 PM (GMT 0)
Good luck drt,

Keep us posted.
Posted 12/1/2012 8:48 PM (GMT 0)
Good luck drtinsac.
Have you given up on linx ? What made up your mind?
GH
Posted 12/2/2012 5:46 AM (GMT 0)
Hi GH - yes I have moved past the idea of LINX. The main reason is that the research I've seen on my specifics (isolated upright reflux, normal DeMeester, atypical only symptoms) indicates that symptoms were resolved with fundoplication. According to a paper I read, upright-only refluxers have hiatal hernias that appear (or enlarge), and LES that become abrnormal, when the person is upright. Because of that research, I *know* fundoplication should take care of it.

But I do not know that LINX would work for that, since I do not think it's a typical case of anatomy and symptoms that most heartburn patients have (typical LINX patients so far, from what I read).
Posted 12/2/2012 9:26 AM (GMT 0)
drtinsac,

This makes sense. Good luck with your surgery. You seem to be very objective in your decisions; how did you convince yourself about the sideeffects of fundoplication? The need for redos is what bothers me most.

I am still hopeful of LINX while my lungs are complaining with abnormal spirometry results.

GH
Posted 12/2/2012 3:01 PM (GMT 0)
Basically I'm looking to get relief from my symptoms, and I'm betting that the side effects will not be worse than what I have now. According to my research I think it's a safe bet, we'll find out. Since fundoplication is the only thing 'proven' for this, I don't have any other option as safe as this one.

I haven't looked at redo's very much but I think they are overall rare. I do read that some people with fundoplication are on PPIs 10 years later, but that really doesn't give any detail as to why they take them. When I was considered fundoplication, I figured that if they could convert my anatomy into the anatomy of people who are largely helped by a PPI (heartburn-only patients), then I'd be happy with that.
Posted 12/2/2012 6:08 PM (GMT 0)
Drtinsac. Here's an article by Dr Smith ( Linx doctor at Mayo) regarding re-do's. He has it posted on his Facebook page.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1357166/

Good luck with your surgery. You will be on our mind. Keep us posted. Regards. Pat
Posted 12/2/2012 8:20 PM (GMT 0)
Drtinsac,

Very interesting information. As you know I also suffer from a burning tongue, sore lips, sniffy nose at night and the clearing of the throat and a salty taste in the mouth.

I have been told that my pH studies were not difinitive, ENT said no lpr, so I am banging my head off a brick wall here.

I would be most interested if you could point me to your research of acid reflux and burning tongue.

Have you thought about the Endostim? I believe the first three operations are scheduled in the UK for January.

I do hope that your operation clears up all your issues, and wish you all the best. wink

Posted 12/3/2012 4:11 PM (GMT 0)
Hi GC1 - the only thing I'm willing to try is fundo, even if endostim was available but it's not. The reason being fundoplication will modify the anatomy at the LES. I do not know much about the endostim but it does not seem to moify the anatomy, it seems to assume the anatomy itself is OK but just tries to keep the LES closed.

That would probably work fine for someone with a "weak" LES, but I do not believe mine is weak according to manometry. But it does distort in some way that lets reflux up.

Baclofen is a drug that decreases TLESRs, so I bet endostim would act as a stronger version of that. Baclofen didn't work for me, but in my theory it's because the anatomy is problematic when upright, so most of the reflux was not because of a transient relaxation. My LES thought it was closed, but it wasn't closing properly. Again, my theories..

As far as burning, here are some journal article titles. I cannot post links from where I am:

Is There a Relationship Between the pH and Volume of Saliva and Esophageal pH-metry Results? (This paper shows over 30% of the patients in their study had tongue burning).

Oral manifestations in patients with gastro-oesophageal reflux disease: a single-center case–control study (this paper mentions oral burning)

Effects of Gastroesophageal Reflux on the Oral Cavity

--

those are just 3, but there are many more out there that make reference to it. Search terms I've found useful are: reflux glossodynia (burning tongue), or reflux oral burning, or reflux intraoral burning sensation.

 
Posted 12/3/2012 9:12 PM (GMT 0)
Hi Drtinsac,

Thank you so much for the information, I shall be trawling the internet now for key information. I note that you are only willing to try the Fundo, I assume because this is the gold standard operation for creating a new valve. I hope that you find a great surgeon and that all goes well for you, and many thanks again for your kind help.
Posted 12/3/2012 10:15 PM (GMT 0)
drtinsac,

JPT had mostly atypical symptoms with normal DeMeester scores and is better after LINX. So, I am not sure of the conclusion that you NEED a anatomical modification.

In your case, if as you say your LES pressure is low when upright and strong when supine, something like LINX can help you (because additional pressure when supine doesn't hurt you anyhow).

But I agree it is a personal choice based on intuition and feel.

Good luck and keep us posted.
GH
Posted 12/15/2012 2:18 PM (GMT 0)
Medication-related update. When I first wrote the post I was on Baclofen and had quickly gone from 80mg Omeprazole/day to 20mg/day. It took a few days, but that acid rebound hit me noticeably when I tried that. So for the past 2 months or so, I've been taking one 40mg in the morning, and a 20mg at night. Once I missed my nighttime dose and definitely felt the throat tightness return after I ate.

Anyways, now I am going about the titration correctly (more or less) so I am trying to get to 20mg once/day before my fundo on Jan 16, so I've changed my morning dose to 20mg and will keep on this for a couple of weeks, then try to cut out my nighttime dose.
Posted 1/9/2013 1:37 AM (GMT 0)
Had my pre-op appointment today.

First doctor I saw was a young resident.. I asked him if anyone ever gets to go home the same day..he said "sometimes" but he didn't sound very convincing!

Then a nurse came in and showed me some paperwork that said the hospital stay would be 3 days. WHAT?? I asked her what that was about since I had heard overnight from a previous nurse, and a wishy washy "same day" from the doctor a few minutes before. She said 3 days was typical for that surgery (?)..

Has anyone here had to stay that long for a laproscopic Nissen? I know 3 days might be typical for an open procedure, and maybe she was just giving me the "worst typical case". I googled and almost everything I find says overnight.

Other than that, an uneventful appointment. I was told to start my clear liquid diet a day before the surgery. They will call me Jan 15th to let me know what time to be there on the 16th. Can't wait..
Posted 1/9/2013 1:44 AM (GMT 0)
Hi drtinsac,

Most often a typical lap Nissen stay at the hospital is overnight.  In my case, I arrived at 7 AM, did all the prep things getting settled in my room.  After a while I was taken to pre-op and met with surgeon again as well as anesthesiologist.  My husband was with me to this point.  Then I went into the OR and had the surgery.  The procedure didn't take as long as the surgeon had said it would. 

I awoke in Recovery, stayed there for a while, then was moved back to my room.  This was probably early to mid afternoon, but I don't exactly remember.  I stayed overnight, and was released late morning the next day.

I'm guessing they're saying three days due to the possibility of some type of complication, which doesn't have to be a big one.  Nausea might be one...they'd want you on IV antinausea drugs.  Some people can't urinate right away.  Some docs want to watch eating before sending their patient home.  I've even heard of docs who want a barium swallow.

I would be surprised if 3 days was a standard stay.  Why not call your surgeon's office and double check on that fact.

Good luck with your surgery!

We'll be waiting to welcome you to the Wrapped Club!

Best wishes,

Denise

Posted 1/11/2013 6:13 PM (GMT 0)
Not too many days away, Good Luck! about how months from when you actually went to a doc and was diagnosed until they said surgery was an option for you?
Posted 1/11/2013 8:20 PM (GMT 0)
First diagnosed in 9/2011, but I had actually had it for at least 2 years before that.
Posted 1/18/2013 12:52 AM (GMT 0)
Hi all, I'm just back from the hospital.

The surgery went well yesterday, they repaired what they called a small hiatal hernia and did a Nissen wrap. I was relieved to hear that they tightened up the diaphragm (hernia repair) because the GI who did the endoscopy said it was very small.

The last thing I remember before the surgery is someone pushing a soft mask over my face and telling me to breathe in. Then I remember being in either the recovery area or my room. Apparently the surgery took about 1.5 hours, longer than I'd read about.

I was given ice chips and water right off, and was able to burp right away, but small burps. My shoulders (like in the trap area) and sore throat hurt most at first. Today, it was my abdomen which hurt most, especially when I was up and around. In the hospital, I ate lots of jello, sweet ice, and juice. I had originally thought I'd want to go home the same day, but I really think that would have been a very bad idea. I ended up staying in total around 26 hours in the hospital, with about 3 of those hours spent waiting for the surgery.

Right after the surgery, I seemed to notice my symptoms (bitter taste and tongue burning) were gone. Now, I seem to notice a bit of them, much less than before. But I am also thinking with all the swelling going on down there, that it's too early to judge the final result.

They sent me home with loretab liquid pain killer, a liquid stool softener, and some under the tongue dissolving anti nasea medication. I was told to keep taking PPI for now.

They said I could eat non-clear liquids and soft foods at this point. My plan is to start with ensure type drink from Costco, and protein shake, then some mashed potatoes.

Off to rest, did not get much sleep in the hospital.
Posted 1/18/2013 1:11 AM (GMT 0)
congrats, hope it will only get better and that nasty LRP goes away
keep us posted
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