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Old 10-08-2009, 11:44 AM   #1
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Question Recommendation for surgeon or clinic specialized in Nissen for LPR

Hello
I'm a 28 year old male from Germany, I've been diganosed with severe LPR over a year ago, after having suffered from unexplainable throat symptoms for over 7 years now. I've even had a completely unnecessary tonsillectomy and sinus operation, since most doctors in this country have never heard of extra-esophageal. There is not one expert in all of Germany on LPR reflux.

I've been on twice daily nexium for over a year now and it's not helping much. My throat feels like it is on fire and I have dental erosion and severe chest pain and heart racing, which makes it feel like a heart attack is coming any second.

A manometry showed that I have an weak Lower Esophageal Sphinter LES, which apparently is also to short. The upper esophageal sphicter supposedly works fine. No esophageal dismotility. 24 hour impedance / ph measurement revealed that I only have upright reflux with about 40 episodes per day, usually after meals, the longest lasting a half hour.

My ENT doctor refuses to recommend me for surgery, my gastroenterologist says he has never seen this kind of reflux and cannot predict the outcome, but would be willing to try the surgery.




I would like to have the surgery done in America, because it seem doctors there have a little more experience with this. Can anyone, perhaps someone who has had a successful Nissen fundoplication for LPR, recommend a clinic or surgeon specialized on LPR? Anywhere in the US (or outside) is fine, as long as they know how to deal with LPR. I'm deathly afraid of having a third unnecessary surgery, which again might not help, especially one as life changing as a nissen fundoplication.

Thank you so much for your help

 
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Old 10-08-2009, 09:00 PM   #2
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Re: Recommendation for surgeon or clinic specialized in Nissen for LPR

PhilGer,

Your test results are similar to mine. I had good EGD's, but my Manometry showed a very weak LES that had gotten worse over the course of a couple years between my first and second. My 24 hr pH, went from bad to extremely severe when last tested (and I even had a "good" day on the day of the test.) I also had a Modified Barium Swallow and Esophagram that confirmed the reflux.

Surgery is a serious step. It has a varied success rate depending on your symptoms. The symptoms I had have a very high success rate and that has held true for me so far. It was literally life saving for me because my reflux had affected my breathing so badly.

My surgeon does not specialize in the Nissen Fundoplications, but he has had a lot of experience doing the surgery. I've had good luck with my procedure.

If you are interested, I'll share more information with you. I live just north of Salt Lake City, Utah.

 
Old 10-08-2009, 11:09 PM   #3
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Re: Recommendation for surgeon or clinic specialized in Nissen for LPR

Thank you for your answer. I'm happy to hear the fundoplication worked so well for you.


I would very much be intersted in any further information you could share, also in regards to what symptoms have a good outlook and which don't.

A few more things just came to mind, my barium swallow / esophagram revealed no anormalitys, no hiatal hernia either. According to the impedance measurement the reflux was almost all fluid and not gaseous (I take it that is a good thing). They were unable to measure above the upper sphincter, but said the reflux went as high as their probe could measure. I am not overweight (never was), non smoker, non drinker all my life. I lived very healthy, I shouldn't have gotten this...

How did your LPR start? Mine started after a persistent infection during the flu season. Supposedly strong coughing can permanently damage the sphincter.


Salt Lake City wouldn't be too bad a travel for me. I went skiing there with relatives when I was a kid

 
Old 10-09-2009, 08:50 PM   #4
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Re: Recommendation for surgeon or clinic specialized in Nissen for LPR

PhilGer,

Sorry to hear about all of unnecssary surgery. LPR is just now being recognized like it should be. I went almost two years with it being treated as allergies, etc. But when I finally went to ENT he diagnosed it (you read my other post I believe).

Was your Ph/Impedance test done on Nexium or off? Am I correct to assume from your post that your Ph was very low (meaning it was very acid), or was the Ph high which means the reflux was non-acid? The reason I ask is there can be other reasons for why it could still be acid on Nexium.

I was taking 80 mg of Nexium and manometry & Ph/Impedance was done on Nexium. My understanding is it's better to test on PPI (Nexium) as that tells the GI doctor if the reflux is still acid that there might be another cause for the acidity.

Even with non-acid reflux, damage to the vocal cords occurs. I notice you mentioned about infection after flu. I hardly ever have an upper respiratory infection, but when I do it goes straight to the throat first and then down into airway. When I was in Ireland last Oct, I got a bug and it went straight to throat. Luckily, I had brought some antibiotics with me and after a horrendous sore throat for 2 days, cough, etc. I started on antibotics. (Also, a non-smoker, non-drinker, too). But I've had severe bronchitis a few times in my life, and always starts with sore throat!

I don't know if you've seen this website. They seem to be knowledgable about LPR (they call it LERD). It's from the University of Maryland-they have an Aerodigestive Center. They some research papers on LERD on internet. It sounds like they might be leading the research on LERD. They also have video of the Nissan procedure. Here's website:
http://www.umm.edu/aerodigestive/index.htm

It sounds like they might be able to help you. I can't recommend a surgeon yet, as I still have to see GI doctor on Monday to get full results and see what he recommends. Hope you get some answers soon.

 
Old 10-10-2009, 12:08 AM   #5
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Re: Recommendation for surgeon or clinic specialized in Nissen for LPR

Thanks for the link, very informative. I will read my way through this site later today and perhaps contact them on monday. I'm off to work now, so I have to keep it short; in answer to your questions:

I'm only on 40mg Nexium / daily, my doctor refuses to give me any more. I took 60 for a while, it didn't change anything. The ph test was done without Nexium (I had to take a 10 day break and definitely felt worse towards the last days).

Your respiratory infections sound exactly like mine. They ALWAYS start in the throat. It starts with a tickling, a feeling like there's a needle stuck in there and from there on it just spreads and becomes extremely painful. These recurring infections are classic symptoms of LPR, yet my doctors took them as the reason for the tonsillectomy and the sinus operations (Can you imagine the pain when the acid hit the open wound after the tonsillectomy? It is pure hell). These infection have gotten much better though since I've begun taking nexium, I've only had one infection I needed antibiotics for this year compared to about 15 last year.

Best of luck for your results on monday!

 
Old 12-01-2009, 06:07 PM   #6
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Re: Recommendation for surgeon or clinic specialized in Nissen for LPR

I had my surgery done at Tampa General Hospital and my surgeon's name was Dr. Rosemurgy and Dr. Sharona Ross. This is their specialty. I am still having pain from my surgery and trouble eating anything but soft foods

 
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