How did you convince your Dr. of surgery?

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theacidrefluxman
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Date Joined Oct 2009
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   Posted 9/15/2011 8:56 AM (GMT -6)   
Hi everyone,

I woke up w/ reflux this morning and just decided I have had enough. It has been 3 years, and the PPI's that work for me cause a right side pain that makes it impossible for me to take them. I am 28 years old and have had a number of manometries, ph tests, and endoscopies. Dr's don't see me as a candidate for surgery mostly because I occasionally have esophagitis but don't have Barrets, so even though my symptoms are terrible, they don't think I have a horrible case.

I thought this morning that I wanted to give up, so the next best thing is to go full steam for the surgery and hope for the best. My question is: for those who have had the surgery, how were you able to convince your dr you needed it? especially if you didn't have Barret's?

I was telling my wife today that I feel like the kid who keeps getting held back in school. I see others get their few tests done, get surgery, and get better. And here I am having done many tests, learned so much, tried everything...and still no progress....

I'd love to know how others were able to get reluctant doctors/surgeons on board for surgery. Even a surgeon I went to see here said a wait and see approach w/ continual endoscopies would probably be better for me than surgery as long as I can live with the symptoms...but thoughts of this progressing and eventually dying from this disease are just too much for me to bear, and having the symptoms makes my life hell as I think constantly about it. Thanks!

Chuck T
Regular Member


Date Joined May 2011
Total Posts : 143
   Posted 9/15/2011 9:31 AM (GMT -6)   
Do you have a weak LES? Have you considered waiting for the LINX procedure? Personally I am very scared of what can go wrong with a Nissen. My symptoms have died down significantly recently, but if they flare back up, I plan on waiting for the LINX. Just a thought.

Tandem Rider
Regular Member


Date Joined Jun 2011
Total Posts : 122
   Posted 9/15/2011 9:36 AM (GMT -6)   
Look for a Heart Burn clinic at a hospital. I went to two different GI doctors, had four endoscopies and was always told that I was not bad. Then I found the Heart Burn Clinic at Hancock Regional Hospital. The Heart Burn Clinic listened to me, took my reflux problem seriously and identified my reflux with a 24 hour pH test. I had the TIF surgery and reduced my reflux score from 25 to 5.8 and I am much better. Good luck, I know it is frustrating.

aciphexo
Regular Member


Date Joined Apr 2011
Total Posts : 377
   Posted 9/15/2011 10:01 AM (GMT -6)   
I suspect this is going to be exactly my problem too.

I haven't spoken to any surgeon yet. But both my GI and ENT have said that I need to wait and see what happens. In my case, it has only been about 6 months. I can not take the PPIs or even the H2s due to severe side effects (they do seem to help the reflux though). I've been doing a lot of natural oriented stuff but my symptoms are not going away (although they are better than what they were 2 months back).

Everywhere I read it seems to suggest that "this thing" never goes away. You either do the meds or the surgery. With the meds, "some" people can go off the meds and also get asymptomatic while others have to stay on them forever - but unfortunately I don't have the luxury of trying this experiment - since I can not be on the PPIs for long enough time.

My tests so far have been: Barium Swallow => normal / Endoscopy => normal / Manometry => normal / pH => abnormal (significant reflux in the throat). My current symptoms are: throat and chest aches and discomfort and bitterness in the mouth, tongue. I am constantly thinking about this stuff - as the food doesn't taste good, I don't look forward to anything social / food oriented, I am constantly thinking about what supplement to take to minimize the symptoms - and am in constant fear that I will never get / feel normal again. So, yes my quality of life is suffering.

So, should I go for the surgery or deal with the discomfort and this lower quality of life? This question is so much harder to answer than lets say if I had structural problems (hernia) or when I would be refluxing a lot (volume refluxing). I was thinking that may be I could use LINX surgery instead - but it is not available in the US yet and I am not sure how long can I wait for it given that I am already getting so burdened by my symptoms.

I got my tests done in March/April .. may be I should go back again end of the year to see what my tests show now - before I take my next steps.

What fun :(

theacidrefluxman
Veteran Member


Date Joined Oct 2009
Total Posts : 739
   Posted 9/15/2011 11:29 AM (GMT -6)   
@ Chuck I don't know about my LES but I do have a hiatal hernia, which the dr's say is small and is not a big deal. I had a PH test say I had reflux too, but, like you PPI-LESS, the doctors just seem to want me to put up with it. And I have gotten different opinions and really pushed, and all dr's and surgeons think a wait and see approach for me is better. I guess I can't be blamed for pushing and always looking for new advice and expert opinion and trying to deal with this.

aciphexo
Regular Member


Date Joined Apr 2011
Total Posts : 377
   Posted 9/15/2011 11:36 AM (GMT -6)   
@theacidrefluxman - do you have only GERD symptoms or LPR like symptoms as well?

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 9/15/2011 12:41 PM (GMT -6)   
Hi ARM,
 
I was in a similar situation.  I had breakthrough reflux on 40mg Protonix twice a day and 300mg Ranitidine at bedtime.  That, however wasn't the worst of it...I had GERD induced asthma that was out of control. 
 
I did not have Barretts.  Not even esophageal inflammation when my endososcopies were done.  When I had the 24hr PH monitor test I tested 4 the first time and 14.6 or so the second time.  The 4 number was crazy.  I was in agony without the PPI, and had lots of pain the day of the test. 
 
My PCP sent me to the GI, and he was the one who was pushing for surgery.  Both he and my asthma doc were convinced that even a little reflux was creating havoc with my lungs.
 
This went on for over 4 years.  Finally, my PCP threw up his hands, and bypassed the GI doc...referring me to a thorasic surgeon himself.  I saw him, was tested, the surgeon said I was a good candidate and that I should schedule a surgery.
 
Knowing what I know about how important the most experienced Nissen surgeon is, I went back to my GI doc.  That was when he gave me the PH test and the results were 14.6.
 
FINALLY, after many doctors notes from my asthma doctor and PCP, my GI doc said, "Well, I suppose a couple good reflux episodes a day could cause trouble with your lungs.  You could either treat your reflux with medication, or I could make you an appointment to talk to a surgeon."
 
The surgeon, after considering the referrals of my asthma and PCP agreed to do the surgery (although he said, "I have some concern about the 14.6 DeMeester score, but I trust your other doctors who know you better...") agreed to do the surgery.  Note:  I'd already had an endoscopy, PH monitor, manometry, stomach emptying test...the whole gambut)
 
I scheduled the surgery for three weeks later.  The rest is history.
 
If you can get your PCP on your side, it could help. 
 
Have you considered getting your PCP to refer you to the best Nissen surgeon directly?  Then the surgeon could do your testing and determine whether or not he/she thinks you would benefit from the surgery.  In the end, that's what you'll have to do...the surgeon will either look at your recent tests, or do his own.  Half the battle is selecting a great Nissen surgeon, but the other half is allowing that skilled surgeon to determine whether or not he thinks it will solve your problems or create more.
 
Once I got the GI doc out of the way, things were a lot easier.
 
Good luck.  I do think that if you put pressure on it will help. 
Hope it all works out for you!
Denise

theacidrefluxman
Veteran Member


Date Joined Oct 2009
Total Posts : 739
   Posted 9/15/2011 1:46 PM (GMT -6)   
that's the thing. I've seen two surgeons, one on more than one occasion. The latter did a number of tests, the former looked at past test results. Both said they were not comfortable doing surgery on me at this point, and that a wait and see approach is best...

aeshleyrose
Veteran Member


Date Joined Jul 2011
Total Posts : 656
   Posted 9/15/2011 2:28 PM (GMT -6)   
Hey ARM,

I would just go back and use the magic words - "quality of life" - and let them know that your life kind of sucks right now and that you don't feel that waiting and seeing is your best approach. Outline for them SPECIFICALLY what you eat, when, what your pain/discomfort levels are thoughout the day (I was documenting mine every 15 minutes to be precise), and tell them all of the lifestyle changes that you've made. THEN lay it out - IT'S NOT WORKING!

That may sound a little pushy, but when it comes down to it, you're suffering, not your doc. I know that they probably don't consciously do this, but it's a lot easier to give someone else pills and tell them to wait it out than to do it yourself.

My doc, for example, told me to take Nexium for 6 months and come back if it didn't work. So basically what he suggested is to lower my stomach acid content for 6 months and then let it go full force again. Hell-o?!?!? I would have been miserable and OF COURSE my reflux would have come back.

My humble suggestion is to make an appointment with your doc and then lay it out for him short and sweet like outlined above. Lifestyle changes, foods avoided, then BAM! It still hurts and it's not getting better with time.

Best of luck to you. Let us know what happens!
Ashley

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 9/15/2011 3:20 PM (GMT -6)   
Hi ARM,
 
I think Ashley's approach is exactly the right one.  yeah Surgeons are very fearful that they will do the surgery and it either won't help, or will make you worse.  They don't want patients coming back at them and complaining.  If you can document just how difficult things are for you, it just might work.
 
Good luck!
Denise

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/15/2011 4:37 PM (GMT -6)   
My insurance allows for me to seek second opinions and to chose my own doctor or specialist without a "gate keeper". After my GI drug out my testing over a year he told me he wasn't sure the surgery would help me and the recovery was too hard.
I wanted the surgery so I did my own research and found another GI who was also a surgeon. He looked at my charts and did his own EGD. He determined that the surgery would help me and did it two months after I saw him.

Speak up! Kick up a fuss! Tell them you're miserable! It's the only way to be taken serious.
Joy

theacidrefluxman
Veteran Member


Date Joined Oct 2009
Total Posts : 739
   Posted 9/16/2011 6:32 AM (GMT -6)   
Thanks all. I've been looking at my medical records this morning and I found one thing. I have had 3 ph tests done...

May 2009 - showed results for slight GERD, no demeester score.
Oct 2009 - Johnson/Demeester score of 50.8 (normal noted as being less than 22)
May 2011 - while on PPI, I still had all symptoms but test came back as no GERD (while on PPI)

When I saw my Oct. 2009 test with that high demeester score I got very scared. Not sure if Johnson/Demeester is same as Demeester, but someone mentioned they had 4 and 14, so if I had 50.8 isn't that really bad?

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 9/16/2011 9:02 AM (GMT -6)   
Hi ARM,
 
I was the one with the 4 and 14 DeMeester (yes, Johnson-DeMeester is the same thing).  I actually was told that "normal" is anything under 14, so 14 is borderline.  You are right that a DeMeester of 50 is high.  If I'd had those results I wouldn't have had to wait so long for surgery.
 
Keep in mind that your surgeon wants to avoid the situation where a patient has the surgery and symptoms remain the same or get worse.  That explains the hesitation.  Still, you should have a right to override that decision if you are suffering and can express that suffering.  Listen to what they have to say, and insist that they listen to you as well.
 
I wish you good luck!
Denise
 
 

theacidrefluxman
Veteran Member


Date Joined Oct 2009
Total Posts : 739
   Posted 9/16/2011 9:51 AM (GMT -6)   
I thought the surgery could maybe not resolve symptoms, but that yes if they existed afterwards I would at least know that it isn't reflux, right? I mean if you get the Nissen done you won't have reflux, right?

I thought it had complications, etc., but that it will always work in stopping reflux? I'd love to read more info from you on that. I understand surgeon hesitation, but thought it was due to complications that did not include continued GERD. It can't make GERD worse, right? How could it possibly...?

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 9/16/2011 11:48 AM (GMT -6)   
Hi ARM,
 
What are your symptoms?  I assume your're atypical...none of the regurge of acid and food into your mouth, etc.  I am also atypical.  I've never been diagnosed as LPR, but I had all the symptoms.  While I had some heartburn that was painful, I never had regurge, and I know that I was having a lot of silent GERD. 
 
My most bothersome and unhealthy symptoms, as I've often shared, were lung related.  Of course, I also had a lot of throat phlem, but asthma was the dangerous health issue that I faced.
 
Like you, I finally decided I had to give surgery a try...if it didn't work, then I could rule it out.  I guess for atypical symptoms the success rate is from 50%-75%.  My suspicion is that because they can't make the wrap so tight that food will have difficult passing through, there is always a possibility that a tiny amount of acid could get through.  Those of us with atypical symptoms tend to react to a lot less acid.  Nobody as told me that this is the reason, but it seems logical. 
 
I did not have Barretts, and although I would sometimes get esophagitis (Mainly when I had gastritis), I was not one of those great surgical subjects that they prefer to work on.
 
It took two and a half month, but my lungs did clear, and they've been better ever since.  Because my lungs are so sensitive and I went through so much, my PCP and asthma doctors want me to take precautions anyway, so I continue to take 40mg Protonix before dinner, and I still sleep with an elevated bed.  I probably don't need to do these things, but I go along with their wishes, because my experience was so bad post-Nissen and my lungs are so sensitive that I certainly don't want to take any chances.
 
Still, prior to my Nissen I had extremely unhealthy lungs, was hospitalized on occasion, took far too high a dose of  inhaled steroid with far too little results.  I went from 4 puffs of 230mcg Flovent twice a day, plus Serevent twice a day, (and intermittent oral steroids) to taking 2 puffs 115/21 Advair twice a day. That's going form 2,020mcg of inhaled steroids a day to 460mcg a day.  I'd say the surgery worked!  Plus, before the surgery I was taking several nebulizer treatments daily.  Because of all those steroids I developed adrenal insufficiency.  I just wish my GI doc had been more cooperative and I'd had the surgery before the steroids damaged me permanently. 
 
So...my lungs are better, I experience no reflux, and I consider the surgery a big success.  I do have allergy-induced asthma, but at the moment my lungs are clear and my peak flow is great.  I couldn't have said that before the surgery.
 
I wish you lots of luck in finding someone who is willing to help you.
Don't give up!  I just wish I'd been more assertive during those four years of horror.  I hadn't found this site, and a lot of what's written on the internet regarding Nissens is very scary.  I found people here who were positive and realistic about the surgery.  It was a blessing, and helped me get the courage to go forward with the surgery, and recovery.
 
Hang in there!
Denise

theacidrefluxman
Veteran Member


Date Joined Oct 2009
Total Posts : 739
   Posted 9/16/2011 12:05 PM (GMT -6)   
I am an atypical case in that pills often don't work for me, but my only symptom is heartburn. Nothing in the mouth ever, and no other symptoms, just heartburn. But since dr's can't make sense of it they are cautious I think, but I have severe muscle damage consistent w/ GERD and in the past PPI's did work. Only thing is when they do an endoscopy I look "fine", although I know only 50% of reflux people even get esophagitis...

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 9/16/2011 3:36 PM (GMT -6)   
Hi ARM,
I was always fine on my endoscopies, too.  I would say that the PPI's didn't work for me either.  I was on 40mg Protonix twice a day and 300mg Ranitidine at night, and I still had breakthrough heartburn symptoms, and as I said, had enough GERD and Silent GERD to create havoc with my lungs.
Good luck,
Denise

aciphexo
Regular Member


Date Joined Apr 2011
Total Posts : 377
   Posted 9/17/2011 8:29 AM (GMT -6)   
Chuck T: Are your symptoms in remission because of the PPIs? Or are you off the PPIs now and still without symptoms?

LocalGuy23
Veteran Member


Date Joined Sep 2011
Total Posts : 620
   Posted 9/17/2011 1:37 PM (GMT -6)   
I still need to do a PH test but I know I have a cis reflux regarding high doses of PPIs. I with my GI would recommend surgery for me for some relief....
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