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3 moths post nissen Fundiplication surgery

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Posted 10/18/2016 3:48 PM (GMT 0)
Hello i am desperately looking for answers and help. I was diagnosed 3 years ago with hiatus hernia H Pylori and silent reflux. Was put on Lanzoprazole twice daily and 6 months later felt a whole lot better. However not wanting to be on medication for the rest of my life i was given the option of surgery. i had the surgery on 26/7/2016. Within 2 days i felt all my old symptoms coming back. i was told by my doctor to go back on the medication which i have been taking for 3 months now.

However my throat is more painful than ever. i have the soreness and burning white tongue which is totally ruining my life. This is very debilitating and i really do not know what to do with myself. I have had a barium swallow which shows the wrap is in place and endoscopy showed the wrap still in place. I have yet to receive the results of my PH manometry from my consultant.

last week i also saw an ENT consultant who looked at my throat and said that my larynx was not inflammed and if i was having reflux then it would be.

They also found gastritus in my stomach when they put the camera down.

any answers would be greatly appreciated thank you

Laura
Posted 10/18/2016 10:39 PM (GMT 0)
The Nissen is a life saving procedure for many people. Unfortunately for me all my serious reflux symptoms appeared almost immediately after my full wrap. My GI would not see me & said it was impossible to have reflux after a full Nissen.

After a year of hell seeing ENT, allergist, pulmonary & other GI specialists I proved I did indeed still suffer reflux, DeMeester of 45 still after a full Nissen! Yes, my Nissen is still intact which only means its there.

I found a thoracic surgeon in Florida who specializes in Nissen redos.
Except he does not redo Nissens, he performs a dfferent surgery called the stomach valvuloplasty. He builds a new LES from inside of the stomach. His entire waiting room is filled with failed Nissens, people just like me! AND I spoke with a couple of post surgery successes, they are over the moon.

He is Dr. Farid Gharagozloo, Florida Hospitals, Orlando FL. You can google it & take it from there. My surgery is 10/31 & I CANT WAIT!!!
There is hope & he said he will fix my reflux once & for all!

Good Luck to you.
Posted 10/19/2016 7:28 AM (GMT 0)
Hello PM dancer

Thanyou for your reply. I live in England and i am not sure that they carry out this procedure over here. What are the success rates for this? What are your symptoms. Have they reappeared worse than before and have you tried PPI's for the symptoms.

many thanks

Laura
Posted 10/19/2016 12:08 PM (GMT 0)
No clue as to success rates. Yes, on PPIs for years, Dexillant worked best but not well, and is expensive. None fully controlled my reflux. Main complaint was throat clearing chronic cough followed by burning, regurgitation & swallowing problems. I developed aspiration pneumonia due to the cough. All symptoms returned in full force right after Nissen. I won't say worse than before because at their worst they are life restricting, ex. throwing up spontaneously into my mouth while dining out.

I forgot to mention my acid is so bad that my esophagus is burnt, its blackened, high DeMeester.
Posted 10/19/2016 8:03 PM (GMT 0)
Hello PMdancer. I have today returned from a visit to my surgeon. He showed me all the findings from the barium endoscopy and Ph manometry. He said that my throat problems are not coming from acid reflux.I sat and argued the point with him for nearly an hour. He has said that he will not do another surgery because my wrap looks perfect.

Therefore he is referring me to a gastro specialist and an ENT specialist as he thinks that there is something else going on. He also told me to stop my medication as it was not doing my stomach any good.

I am totaly at my wits end as what to believe anymore. I realy don't care what is causing the pain i just want it to go away. How long have you been on PPI's and what strength have you been taking?
Posted 10/19/2016 10:07 PM (GMT 0)
Your is the exact same response I got! You need a Bravo which measures acid. Go to a different GI & state your case. INsist on a Bravo. When I finally got one it proved I had really high acid that was burning my esophagus.

I knew immediately after my Nissen that my problems were still acid reflux but went along with the stupid directions of my surgeon & spent a year going through several other expensive & waste of time tests.

Find another GI DR. preferably an objective one that isn't associated with your current one. Refuse t settle or waste time like I did. Be strong.

out of curiosity - what did your current Dr. think your problem is???
Sinuse infections? Allergies? Lung problems?

Keep taking your PPIs - if you stop its harder to start up again. Take the maximum. They will not damage you, sounds like a setup. Follow your body - you know it best! Listen & respond. Try to find a Dr., someone with heaps of Nissen experience to talk to. (s)he will tell you there is a high incidence of Nissen failures, very high.

I took PPIs for 10 years (on them again now) tbey helped reduce but never eliminated reflux. 40MG Dexillant per day.
Posted 10/20/2016 11:46 AM (GMT 0)
I agree with pmdancer, get another opinion. I also took PPIs for many years and never had issues, they made my symptoms tolerable. When I did stop taking them, I suffered zero rebound effects. I went to a top gastro doctor for years who never suggested further testing, other than the EGDs that I had over the years. It wasn't until I went to a pulmonary specialist for adult onset asthma, that I had the proper testing. He ordered a barium swallow, then recommended a surgeon that did a procedure that I had never heard of - Nissen Fundoplication. The surgeon did another EGD, manometry, and Bravo pH testing. I had the Nissen 2-1/2 years ago, along with hernia repair, and it was the best decision I've ever made. Ironically, the asthma issues were caused by my severe GERD.
Posted 10/20/2016 5:14 PM (GMT 0)
Thank you for your replies. I have decided to stay on the PPI's until i see my Gastroenterologist. Apparently he is a top specialist in his field. I will enquire about the Bravo testing. I will not budge until he agrees to it. My symptoms are lump in throat excessive mucus loss of voice and throat pain, shoulder and back pain. these are classic LPR symptoms. I was diagnosed with this 3 years ago.

After 6 months of being on the medication these symptoms all calmed down and was tolerable. However not wanting to be on the tablets for the rest of my life i pushed for the op and was offered it on the good old NHS. Part of me wishes i had not bothered and just stuck to the medication
Posted 10/20/2016 5:45 PM (GMT 0)
Good plan! A Bravo measures ph or acid. It will tell you definitively if you still have acid reflux. This test was the one that finally had the nay sayers in my case scratching their heads, they had to admit they were wrong and I had a high level of acid in my esophagus after a full Nissen. Also the endoscopy with the Bravo showed my esophagus to be burnt black from acid, very clear and convincing evidence.

You do not need to spend time or money chasing phantom ENT, allergy or lung problems if you have a Bravo. The Nissen can be a wonderful solution but it does not succeed in all cases.

The throat clearing/mucous/chronic cough refllux symptom is especially difficult to treat with the Nissen, only about half the people in this case get any relief from a full Nissen.

I think of it this way - unless the Nissen closes off the esophagus completely - acid can still make its way up the esophagus. This would require the Nissen to be very tight. If the underlying problem is high acid you know it - PPIs help, right? Get the Bravo & learn for yourself. Let me know how you go! Be persistent & don't waste time with unnecessary tests or treatment like I did.

Good luck, you are on the right track! Karen
Posted 10/20/2016 9:09 PM (GMT 0)
Karen - Thank you for taking your time and helping through this. Please let me know how you get on with your surgery on the 31st - Laura
Posted 10/20/2016 10:29 PM (GMT 0)
Thanks Laura, I will look for you here & also share an update after my surgery. I'm happy to contribute to your process & success. Don't let anyone convince you of something your intuition tells you is incorrect.

Listen to your body, get some diagnostics & take it from there.
xo Karen
Posted 10/21/2016 3:59 PM (GMT 0)
oliver i feel for you, i just had my done 08/17/2016 and have had some complications. i agree that being on long term PPI i.e. omeprozale is not good. I was on the for 7 years and started to get complex migrans, dizzines, etc..being on those acid blockers especially the strong one like omeprozale inhibits the body from absorbing needed vitamins i.e. vitamin D. Also, you mentioned about gastrities, im not trying to scare you nor play doctor here but that could be from the surgery and the doctor hit the vagus nerve. Im not saying he spliced it but he could have nicked it, the vagus nerve is what stimulates the stomach to contract to have a bowl movement. After surgery i was playing to rough with my 4 year old and bruised the nerve. My heart rate would not go down and had no bowl movement for two weeks (used laxitive though), scared the crap out of me. SO WHAT I RECOMMEND TAKE IT SLOW, NO JERKY MOVMENTS. Also i agree with other posts dont settle for anything less, some of these dcotors are really ignorant and narrow minded. Also if your looking for a redo on the nissen which i know you did not mention be careful. one more thing, the gastritis issue if its related to the surgery than get that documented, that could be malpractice issue
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