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Posted 12/27/2011 7:08 PM (GMT 0)
In October, I had the regular pH testing that did not show much reflux.

So, today I am undergoing pH impedance ... and we'll see how it goes. The impedance one is supposed to show both acid as well as non-acid reflux.

However, I am concerned that because I have some good days and some bad days .. and since I am feeling ok today (and not seem to be refluxing much), this test will again show up as negative - and because I do get symptoms otherwise (but not as regularly anymore), this will end up being a false-negative!
Posted 12/27/2011 7:39 PM (GMT 0)
Good luck with your test -- I know exactly how you feel. You don't REALLY want your reflux to be bad, but you do want something to show up, too!

They really screwed up with my last 48-hour Bravo study. The medical assistants set up the instructions and appointment, and gave me a Reglan tablet to take before the procedure. (Anti-nausea protocol for EGDs through this office, although I'd never been given it before.) Dumb me, I'm just following directions. Anyway, turns out that Reglan tightens the LES and improves reflux symptoms, in addition to its other uses. So, the first 24 hours (at least) of my pH study was corrupted. Live and learn...

Reglan would almost be a viable option for managing reflux, if it weren't for its side effects.

-Bruce
Posted 12/28/2011 4:20 PM (GMT 0)
So, my GI communicated prelim. test results. He will have the official numbers out later for me - but my approx. numbers are:
% acid exposure = 5.6% overall
% acid exposure - upright (during day) = 8.3%

I believe the normal is like 4.2 or something.

So, based on this test, it is an abnormal study and I can now be officially diagnosed with GERD.

Yay! At least I have some proof now .. in case I need this info for any possible surgery?

I will talk to him again next week ... so will know more then.

Post Edited (PPI-LESS) : 12/28/2011 9:27:01 AM (GMT-7)

Posted 12/28/2011 4:52 PM (GMT 0)
Glad to hear you got some results, although, I also understand the implications of that...

I was trying to find the correlation between what your results are, and what is provided on the Bravo report. I guess the % acid exposure is what the Bravo calls "Fraction Time pH <4". In my pH study I had back in February (before TIF surgery), my total was 6%, and upright was 8.3% -- very similar to yours. The Bravo gives a lot of additional info, too, since it's tied together with a meal/sleep diary. Not sure if the impedence study does that too.

-Bruce
Posted 12/28/2011 5:09 PM (GMT 0)
Yes, there are more numbers to come .. but my GI told me that % acid exposure is the most relevant number (according to him demester score is not that informative .. but he'll give me those numbers anyway).

So Bruce - I had some questions regarding TIF.
- I suspect my insurance is not going to cover it. Did your insurance cover it at all?
- I also see that TIF is being conducted as clinical trial in some places .. so will registering there might help with the costs?
- Are you now considering Nissen on top of your TIF (since your throat symptoms have not improved)?

Thanks!
Posted 12/28/2011 5:52 PM (GMT 0)
I have the basic option under Blue Cross Blue Shield, and most of the procedure was covered since, for insurance purposes, it's broken down into components. I have a $150 deductible for the surgeon, then lesser payments for things like anesthesia, pharmacy, hospital stay -- that sort of thing. All these things should be covered similarly between other insurance companies. The bad part of my insurance, compounded by the gouging from the hospital, is for "medical equipment" expenses. The EsophyX device costs $5,000, and BC/BS only covers 70% of equipment. The hospital tried billing insurance over $12,000 for the device, but BC/BS only would cover approximately what the manufacturer charged the hospital. This is what you need to check out beforehand. BC/BS also required that the procedure be preapproved, and didn't have a recognized code for the TIF, so the surgeon put it through as something like "miscellaneous fundoplication" or something like that.

I'm not sure about the "clinical trial" business...I haven't heard of that. Is the TIF still considered new enough for trials? I'd be more concerned about getting a qualified surgeon to do it. "Clinical trial" almost sounds to me like something they do at a teaching hospital, and I have visions of some student learning how to do it, kinda like getting a haircut for free at a cosmetology school. Yikes! :o

Yes, I'm "testing myself" daily, trying to prepare myself for what is looking like an eventual concession to the Nissen, but I'm not there yet. I'm 50, and am alarmed the way my good health has declined since 2008, when this all started. I used to lift weights regularly, but haven't had the energy, and have had neck and shoulder issues I think related to the reflux.

The TIF brought me into the normal reflux range, but I need to eliminate all of it to eliminate the LPR symptoms. As desperately as I want my life back, and my voice, I'm just not sure yet that I can risk the Nissen --especially with some of the comments and experiences I see here at HealingWell.

I have an appointment on January 3rd at the reflux center at the Mayo Clinic, with a new doctor.

Talking about this with good folks like you helps...

-Bruce
Posted 12/28/2011 6:33 PM (GMT 0)
Thanks for the info Bruce. It will definitely help in figuring out the TIF costs (when / if I get to it).

Regarding the clinical trials, I got to this site from Endogastricsolution's site:
clinicaltrials.gov/ct2/show/NCT01118585?term=NCT01118585&rank=1
which indicates "Recruiting" against all the centers listed there.
and further this site here:
www.tifregistry.com

I don't have the details of how one can enroll yet ... but it seems to me that these clinics are offering the procedure along with registering the outcome of the surgery in the registry .. I suspect this has nothing to do with the insurance and basically just that they'll include your surgery's results in the study if you also sign up for it.

My GI however - does not know much about this surgery - and is in general not keen on me getting anything other than Nissen. He thinks he has seen several attempts (endocinch, stretta, enteryx etc) in the last 25 years and none of them worked out and Nissen is the only true time and tested one.

I am quite confused right now. I don't know if I should get the Nissen or not. Nissen if done correctly, can fix this thing for good (at least for a long time). However, it seems quite excessive for the kinds of symptoms I have right now.

TIF is therefore attractive to me but
1) I am not sure if it'll fix my problems (as has happened with you Bruce) and
2) is new, so will be have to work around the insurance problems, will be going against the wishes of my GI .... to name a few.
Posted 12/28/2011 7:30 PM (GMT 0)
hi ppi-less,

what are your current symptomps now?

do you get them daily?
Posted 12/28/2011 7:59 PM (GMT 0)
hi sk55 -

currently I get these symptoms:
- ache/burn around the LES area (in the middle of the chest)
- throat hurts a bit when I swallow (but this symptom has greatly improved since the summer .. and I don't feel it much anymore)
sometimes, I also get a cold/warm sensation in the esophagus in the morning - that goes away as I start to eat.

I have some form of these symptoms daily - yes.

Again, my symptoms have improved greatly since the spring/summer time frame - but are not quite going away though!

oh - and I also get bitter taste in my mouth .. but not as much anymore.

the thing is - these symptoms go up and down .. some days more than the others .. but there is absolutely no correlation with any of my daily activities / diet etc.
Posted 12/28/2011 10:54 PM (GMT 0)
Can you credit anything directly with your routine that has improved the symptoms since the summer, or is it more like the reflux has lessened on its own?

-Bruce
Posted 12/28/2011 11:16 PM (GMT 0)
Hi Bruce -

As I've indicated in some other threads ... I think the yoga - breathing exercises I started to do (sudarshan kriya yoga .. that is taught at art-of-living www.artofliving.org/us-en) did and do help me. However, they don't provide complete relief of course .. but I feel they've probably made my LES work better than before.

This and then I've been taking some supplements such as: george's aloe vera, dgl etc. probably help me .. don't quite know.

My symptoms in the throat have definitely gotten better .. but the heartburn is not quite improving anymore .. after improving a bit in the fall ...

All this is very confusing ... I just don't know what is going on in my upper GI anymore :)
Posted 12/28/2011 11:28 PM (GMT 0)
Bruce -

Since the throat tissues take longer to resolve, I think it is quite possible in your case that .. now that your reflux has been minimized with TIF .... your throat will continue to heal .. and get better with time ...

Do you think so too?
Posted 12/29/2011 12:40 AM (GMT 0)
Actually, my throat started improving quite rapidly in the 3-4 weeks following the TIF, enough so that I began retraining my voice. I was so happy! But then it quickly degenerated into the old symptoms again, and I was immediately back to square one. This was precisely the reason I scheduled an EGD and another pH study in October.

I can talk fairly normally for short periods, but can't sing. That requires openness and flexibility within the throat and larynx -- plus, there is an area of irritation in the back of my throat that easily becomes "stingy" and causes me to cough and choke.

Another thing that absolutely drives me CRAZY is the bubbling and crackling in my lungs, especially when it's quiet and I take a deep breath. I'm all the time struggling with the mucous.

Any improvement that occurred immediately after the TIF is long gone...

I think you've found ways to manage the reflux, somewhat like what I've learned -- without the PPIs. (Although, I no longer do the herbal stuff...never noticed enough change to warrant the investment.) It's enough to keep me functioning and able to communicate fairly normally. But the eating changes, and sleep deprivation from that !@#$ wedge, keep me pretty miserable, and make traveling and socializing problematic. I've found a delicate balance with the wedge, where it's high enough to help control some of the nighttime symptoms, but not quite high enough to make my sciatica more than I can keep manageable with traction exercises I do.

I guess if I have to search for something to be grateful for, I don't reflux as severely as others I have read about, and certainly not the degree I did before the TIF. But I think, in the end, even moderate symptoms can suck the joy out of life just as surely...

-Bruce
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