point of clarification: symptoms while on PPI's

Hi ARM --

I can't speak for the assumptions that all doctors make, but they don't like chronic patients with stubborn symptoms...because they're in the business of "fixing" people, and those patients make them look bad.

"Normal" reflux falls into a range somewhere between 0 and 5% exposure to pH levels <4. The theoretical limit of a Nissen is about 2%. The difference between surgery and PPIs is, of course, you're still fully refluxing while on medication -- just that the acid component has been eliminated. So, what you say is possibly true, although I've been told that corrosive non-acid components in reflux is uncommon. For significant quantities of bile to travel backwards that far, requires other conditions.

Stubborn, atypical symptoms may be the result of a weak UES, extreme sensitivity to remaining reflux, and/or a sympathetic response by adjacent tissues. There has been some inconclusive experimentation with low-dosage anti-depressants to desensitize nerve endings in the esophagus, but that seems to only help a small percentage of patients.

A doctor may not think "problem solved" with a normal pH, but if symptoms persist, in my experience he's going to be frustrated or recommend another physician. Keep in mind that if you fall into this category of normal pH with continuing symptoms, surgery has a low resolution rate. This is a judgment call -- if you're at 4-5%, then 2% through surgery may offer some relief. But any margin less than that is not worth the risks.

This is the reason why studies of reflux therapies usually use a "quality of life" questionnaire. If they used raw pH numbers, it would skew the results.

I realize it's not a perfect solution, but if you can find some relief through meds without too many side-effects, count yourself as fortunate...

-Bruce

I think you're right ARM - and their other response is to suggest increasing the ppi to see if that helps, which it might, but not for those of us who struggle with side effects.

I think I may well fall into the group that has some hypersensitivity - the amount of symptoms I get, the nausea and sensation of reflux, and the impact on my life, far far outweighs the actual pathology found. My cons thought surgery, in my case, would be an extreme measure based on the little pathology found.

I'm glad you're tolerating the meds this time round ARM - good news.

MMM

Hi Ashley --

I fall into the category that you propose. My pH percentage dropped from 6% to 2.9% after my TIF. I can have complete (as far as I can tell) resolution of my remaining symptoms with PPIs, if it weren't for the debilitating headaches and heart arrythmia.

At the end of my testing and consultations at the Mayo Clinic, the Nissen was "on the table." The surgeon told me he didn't recommend the surgery. Under the best of circumstances, I may have experienced relief for a few months, but as the fundoplication healed and settled it's likely that the symptoms would return. This is what happened after my TIF -- I was symptom-free for about four weeks as the surgical site was tight and swollen. Then, as it healed and the swelling subsided, symptoms returned.

My condition was discussed with the entire GI/surgical team (apparently they get together once in a while to do this with certain patients), with a promise that they would "get back with me" with some alternate proposals. It's now four months later, so I guess I have my answer.

In my case, for 0.9% possible reduction in pH, the Nissen is not worth the risks and a lifetime of adjustments/caveats. As I proposed above, if the patient is more in the 4-5% range, perhaps there might be more benefit. However, if the patient is experiencing stubborn atypical symptoms, surgery does not offer a statistically-good outcome.

If the PPIs work, and the patient can tolerate them, this offers a "backup plan" for those who go through with surgery. If the surgery is unsuccessful in reducing the pH exposure to a tolerable level, then the PPIs (at probably a lesser dosage) can bring the patient close to that magic 0% number.

The problem, as I see it, for those in this stubborn category, is the unusual sensitivity. If a patient is experiencing symptoms within the 0-5% range, treatments get dicey. No surgery will eliminate the reflux 100%, and won't address a weak UES. (PPIs may actually lower a patient's exposure to reflux more than surgery, too.) Causes and individual conditions vary from individual to individual, allowing some things better probabilities than others. But an understanding of all this is crucial when weighing the decision, as well as expectations.

This messageboard has a tremendously helpful support system for those who have the Nissen...extremely invaluable. But there is a danger...especially if you're suffering...to overlook how serious this operation is. Sure, with the advent of the laparoscopic technique, the invasiveness is less, but it's still a radical overhaul of a patient's upper GI. I don't see an appropriate amount of cautions about this procedure here, as it is not necessarily a cure-all, or appropriate for everyone. There are plenty of surgeons (experienced or not) who, when approached by a reflux patient who wants the Nissen, will do it without considering its viability. I could likely approach the surgeon who did my TIF, and he would do the Nissen without question. (To his credit, he did refer me to the Mayo when my symptoms persisted.)

It's especially difficult when one reads on the Internet that the Nissen is the best thing a patient ever did, and they would do it again all over. For some, this is true. But we must be careful where we hang our hopes, and not let those hopes overshadow what must be a highly individual procedure. I can't reiterate how important it is to categorize one's symptoms, and how that relates to surgery...or any treatment, for that matter.

Education is key. The patient must know as much about his/her reflux as any physician, and diagram symptoms. Collect all medical records and tests so that they can be reviewed at home, and perhaps carried to other consultations. Understand the differences between typical and atypical symptoms, and where that places him/her. Understand how meds work, and what they do/don't do. Understand what surgery can/can't accomplish. Evaluate where his/her expectations lie. And the list goes on...

There are so many "shades of gray" in this category, that what might be good for one is not good for another. I would not recommend "trying" a Nissen, at any rate. It must be viewed as permanent, because even if it is taken down afterwards, there are still permanent alterations that can't be repaired.

Viewed in this manner, it behooves the patient to be his/her own advocate. Under the best of circumstances, a physician probably won't spend more than 10 minutes reviewing a file. A patient should know themselves better than the physician does.

-Bruce