At my wits end...Doc says surgery not for me!!!

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theacidrefluxman
Veteran Member


Date Joined Oct 2009
Total Posts : 739
   Posted 1/19/2011 9:57 AM (GMT -6)   
I can use any and all advice offered!!!

I can't control my reflux with meds, but my doctor says since I have atypical symptoms (heartburn, no real reflux into my throat...meds don't work), that I am not a candidate for surgery...

Is this true? He said the people who usually respond best to surgery are people with classic symptoms who pills have generally worked for...but surgery is maybe my last hope...

I am at my wits end. I tried prilosec for 2 weeks til I had to stop due to side-effects, but miraculously I was fine for 2 weeks after stopping (after having constant heartburn almost every hour of every day for 7 months, trying all pills, everything etc.)

My dr. says he doesn't think its reflux, I have a PH impedement test scheduled for the 27th. He wants me back on Nexium before the test even though Nexium doesn't work for me at all.

I hate this. I am afraiid of long-term consequences and am just suffering all day every day. I WISH the doctors could understand me...I guess I am an anomoly...I can go 2 weeks without reflux and not be on PPI's (I didn't even have the rebound effect, and had only been on the prilosec 2 weeks without any benefit at all)...

Maybe I should change doctors? My family says I should just demand a better specialist since nobody has been able to do anything for me, and its been 7 months...

So frustrating...!!!!!

Daniel

judy02
Regular Member


Date Joined Jun 2010
Total Posts : 126
   Posted 1/19/2011 12:03 PM (GMT -6)   
*hugs* I'm really sorry Daniel.

I don't really have any advice to give, but just wanted to give you my sympathy. If you're that upset and unhappy with the outcome though, a second opinion sounds like a good idea, especially if you're suffering so much.

I'm guessing dietary changes with mostly alkaline foods isn't helping control your symptoms either...?

I hope you are able to find something that works for you soon.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/19/2011 4:08 PM (GMT -6)   
In my honest opinion, I believe you need a different gastroenterologist. Everything I've heard about having a pH test is that you need to be off of PPIs for about two weeks before taking the test. It's my understanding that PPIs can interfere with the results of the test. This does not sound right for him to put you on the PPI and then give you a pH test. It doesn't make any sense to me.
Joy

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 1/19/2011 4:21 PM (GMT -6)   
Hi Daniel,
As someone who also suffered from atypical symptoms, I feel your pain. Doctors are really only comfortable recommending surgery for those who have an open LES and food and acid refluxing freely into the esophagus (and mouth). They know that these patients are sure to experience an improvement in symptoms once there is a repair and the wrap becomes a backup valve for the non-functional LES.

To a certain extent, I can understand their hesitation. This surgery is a life-changer. Even when it does exactly what is required and the patient is thrilled with the results, there will always be changes in the GI tract that will need to be accepted and adjusted to. While they won't have the horrible reflux any more, there may be swallowing issues, or intermittent dumping, etc. A person must be very positive and realize that these inconveniences are worth the effort, given their improvement in quality of life.

I faced the frustration you are feeling for years, as I visited and revisited GI doctors--changed doctors, and had multitudes of tests. My overriding symptom was asthma. I had reflux, but it was not the unbearable type that is experienced by those whose LES is wide open. That said, I had enough "silent reflux" to create a serious health issue. I even spent a week in the hospital with GERD-induced asthma that was out of control.

I could not get a GI doc to take my symptoms seriously. Finally, after four years of horrible lungs and damaging doses of steroids, at long last, my GI doc suggested I talk to a surgeon. Nobody was thrilled about doing the procedure, as there is no guarantee it will solve atypical problems.

My surgery definitely gave me a better quality of life, and helped my lungs. That said, I still get some reflux, and at times it's enough to affect my lungs. I've been to a different surgeon (we moved) and asked if I needed a redo. After testing, he said that my wrap was intact and perfect, and he wouldn't touch it. There is no way to get reflux to zero, without creating eating issues.

So...I suggest you go to another GI doc and pursue your concerns. Be persistent. Understand, though, that the surgery isn't as perfect a solution for atypical symptoms. If you are willing to take the chance that it will help you (I did), and embrace the quirks you are left post surgery (it's a major revision to your upper GI), go for the surgery.

Good luck with finding a good GI doc,
Denise

theacidrefluxman
Veteran Member


Date Joined Oct 2009
Total Posts : 739
   Posted 1/20/2011 10:25 AM (GMT -6)   
thanks for all your help,

@couchtater, the dr. says if i do the test without nexium he will most likely see reflux, but that that wont help him as far as recommending anything. he wants me on nexium so that when i get it done, he will be able to see if it is acid reflux breakthrough, non-acid reflux, or something unrelated.

I have no doubt it is some type of reflux, and bet its acid, but he is less convinced i guess (especially since PPIs dont work for me).

Ill let you know of the results when the test is done. 1 week, cant wait! Hoping to beat the problem before developing Barrets, but am never going to give in no matter how frustrating and hopeless this gets...
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