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Very frustrated - Candidate for fundiplication, but surgeon not comfortable...

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GERD & Acid Reflux
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Posted 5/24/2011 6:39 AM (GMT 0)
I am so frustrated. After months of waiting and going through testing, the surgeon says "yes you have reflux and and are a candidate for fundiplication, but I will not perform the surgery". I have had a chronic cough and hoarseness for years. Somehow or another, I have reflux at the LES, but it does not show in the upper esophagus. I also have issues with trouble swallowing and the surgeon is afraid he will make this worse with surgery and since he can't prove the cough is from reflux, he is unwilling to perform surgery. I will be doing a 24 hour impedance test to check for nonacid reflux in my upper esophagus. Is anyone familiar with this test and does this give me hope of solving this issue once ad for all. Did I mention I was frustrated....
Posted 5/24/2011 10:13 AM (GMT 0)
It's tricky when a doctor puts his foot down and you don't hear the answer you were hoping for. You could get a second opinion or find another surgeon, but what if this one is right? I would pursue the further investigations and ask if a barium swallow would help. You could also ask about alternative surgeries: is there any other approach that is less risky from the swallow point of view?

I think your surgeon is following standard practice, but like many surgeons he/she is probably not explaining things in the gentlest way possible. The surgeons with the worst bedside manner are often the most skilled with the knife! What he might have said is "We're not at the point where we can consider surgery yet, we need to find out more about your swallow ability next . . "

This IS a frustrating illness, we would all agree. Even when it improves it does so very slowly. Try to bear with the process a bit longer and I hope your results yield some useful information.
Posted 5/24/2011 8:14 PM (GMT 0)
Ask him for a manometry study and barium swallow, too. If he still says no take the results to a different surgeon.
Posted 5/24/2011 11:45 PM (GMT 0)
Thanks Guys. I know he is just looking out for my best interest. I have had the barium swallow and was unsuccessful with the manometry as I could not keep from swallowing for 60 seconds. They could not get a complete study. i will complete the impedance test and hopefully that will give results that will make the surgeon comfortable to go forward. Thanks for letting me vent my frustrations a little:)
Posted 5/25/2011 1:07 AM (GMT 0)
Hi poovey,
Do you think there is any chance you could get a successful manometry? If you could get that test and it proved your swallowing was normal, it could be just the ticket you need for the surgeon to feel comfortable going forward.

People with atypical symptoms aren't as clearcut candidates for the Nissen. There are no guarantees that the surgery will help, and surgeons don't want to cause even more problems.

My GERD was atypical, and I actually had a normal (borderline) DeMeester score. The GI doc and surgeon were both concerned about putting me through the surgery, as the success rate for atypical patients isn't as good. Thankfully, I can say that the surgery worked, and my asthma improved tremendously. It can work, but apparently it's not an easy decision. I had to wait 4 years (of very poor health, high doses of steroids, nebulizer treatments daily, hospitalization for asthma, etc., etc.) before the GI doc would consider sending me to a surgeon.

Will the impedance test take the place of the manometry to determine if your swallowing is strong enough to handle a wrap?

I wish you all the very best, and hope you find an answer soon. You DON'T want to have this surgery if it is not the right thing for you. You'll regret it.
So be patient, and keep going back to the GI doc. A second opinion is always a good option. I actually had to get a new GI doc before I found someone who would actually listen to me.
Good luck!
Denise
Posted 5/25/2011 2:48 AM (GMT 0)
Hi Denise, I guess I didn't give a complete picture. My main issues have been with a chronic cough and hoarseness with the addition of difficulty in swallowing some foods. My barium swallow had two perfect swallows followed by three that were anything but perfect. My ph test showed acid at the LES, but not at the UES, thus the surgeon is questioning whether I will get relief of my cough and hoarseness with the wrap. My issue is that I really need to get off of the reflux drugs as I have been on heavy dosages causing me to not be able to absorb iron, folate, B12 etc... along with chronic bowel problems. As soon as I'm off the drugs, my bowels work fine. I tried to tell him that if the cough went away it would be a bonus, but I really need to get off the PPI's. Anyway, the impedance test will tell if there is reflux that is not acidic that is getting to my UES. IF so, he will feel more comfortable with going forward with the surgery. I would be so surprised if the test does not show reflux due to the continued symptoms, but I have obviously been wrong before:) Thanks for the encouragement. LuAnn
Posted 5/25/2011 3:18 AM (GMT 0)
My personal opinion...is it possible that you are beyond his skill level and he may not be able to admit it?
Number 1 rule for this surgery is getting the best surgeon; that may mean going to another facility. I live in Michigan and ended up at Cleveland.

Oh, btw, Denise and I are living proof of the success that the Nissen provided to our problems with pulmonary issues..oh my! I have permanent lung damage, but the Nissen stopped it from getting worse. Are there side effects?, for me, yes; but the alternative was a permanent tether to an oxygen tank..yes, it was that severe.

Janice
Posted 5/25/2011 3:34 AM (GMT 0)
I am curious, is your doctor guaranteeing you that you will be off the PPI's after your surgery? After my surgery I was off them for a few weeks and my stomach was on fire. Apparently I produce too much stomach acid, so I have been on them ever since, 14 years since my surgery.

Linda
Posted 5/25/2011 4:33 AM (GMT 0)
Hi Linda. Of course the doctor can not guarantee that I will not have to take some meds, but I have been taking 40 mg of Nexium twice a day for 5-6 years. I need to at least minimize my exposure. But, not the doc has not guaranteed that I won't have to take meds.
Posted 5/25/2011 2:15 PM (GMT 0)
Well I guess guarantee was too strong a choice of word! Believe me, with this surgery there are absolutely no guarantees! When I had this done, 14 years ago, I was desperate for help. I had been coughing for over 2 years, had gotten asthma from the gerd and could not eat anything except chamomile tea and tapioca pudding, lol. Everything made me gag. If I saw a dead squirrel in the road I gagged, it was awful!! My quality of life was in the gutter to say the least! I was so sick, so I know exactly how you feel. But, if I was to do it now I definitely would have researched it because it also changed how I live. Back then I just took the doctors at their word and did what they said, not too bright. There was so much I did not know about it. My doctor did not put me thru half the tests that everyone goes thru now.

The surgery took care of my cough for years (it's now back), but caused many other problems. I will tell you what I am going thru if you would like to know, but we are all different so I don't want to put you off about having the surgery. Your doctor sounds very informed to me. I don't know where you live, but where I am (upstate, NY) our doctor choices are limited and I am currently searching for a new GI doc who is well versed in fundoplication patients and their particular problems. So far, not an easy task.
Posted 7/13/2011 11:04 PM (GMT 0)
I thought I would post an update. After having the Impedance test, my surgeon has agreed to go forward with fundoplication. Not scheduled yet, but I am so excited. I know this is the right thing for me:)
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