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Esophageal Dysmotility?


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#1 brianala

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Posted 30 June 2014 - 09:43 AM

Hello all!

 

Just got back from a follow up with my GI wherein he was very realistic about setting expectations. He noted that my upcoming Nissen Fundoplication is unlikely to improve my esophageal dysmotility, and may even make it worse. This is information I've been aware of from my research. I'm also aware that motility is likely to just get worse over time anyways, and I'm prepared for that eventuality.

 

Keeping in mind that I am still in the process of pursuing a diagnosis (my rheumatologist suspects Scleroderma and I go back next week for results of bloodwork) I do understand that many people here also have esophageal dysmotility. 

 

I'm just curious to hear from others who have problems with swallowing and contractions that may have also had a Nissen Fundoplication. Did your motility get worse after surgery? How have your motility issues progressed over time? I've read a lot of clinical information about treatment and prognosis, I'm just curious to hear some first hand experiences, and any advice or things to keep in mind from those who have been there. 

 

Again, thanks for the wonderful reception I've received here! 



#2 miocean

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Posted 30 June 2014 - 04:33 PM

Brianala,

 

These are great questions and I am looking forward to the responses as well.

 

My esophagus is not working either and I have also been told that a Nissen would not work for me. The surgeon at the lung transplant center discussed a Dor Fundoplication where the stomach is wrapped around the esophagus leaving a donut hole for food to go down. On my transplant forum I also read about a Linx procedure. This is a relatively new procedure done laproscopically. The device looks like a metal ring of beads and it is designed to open and close as you swallow.

 

I saw my GI doctor today and discussed these with her. She said the Linx is less invasive and the good thing about it is it can be removed if it isn't working. If you have a hiatal hernia it has to be a small one. My is 2 centimeters so it is a possibility I will discuss with the doctors at the lung transplant center.

 

I am also taking Shelley's advice and if I have a procedure done I will find the most qualified doctor to do it.

 

Thanks for your post.

 

miocean


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#3 brianala

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Posted 01 July 2014 - 05:10 AM

Hi Miocean!

 

Thanks for sharing your story. My surgeon indicated that the abnormal manometry was not a concern, I guess because in my case it's still not too severe. However, my GI is concerned that the wrap could make it worse. To me, I think it's still worth it to pursue the surgery since there's a chance it could eliminate my severe reflux. I take Dexilant, Ranitidine, Lansoprazole and Gaviscon every day, have modified my diet, and yet I still have severe symptoms throughout the day and that wake me up in the middle of the night.  

 

My surgery is not until August, but I'm still very nervous about it and constantly question if I'm making the right decision. :(



#4 Joelf

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Posted 01 July 2014 - 07:23 AM

Hi Brianala,

 

Thankfully, I've not experienced the problems you describe, so can't give you any first hand advice.

 

However, I've found a couple of links to Laparoscoptic Myotomy and Dor Fundoplication and Linx procedure, as suggested by Miocean and also another thread on Toupet Fundoplication which I hope you'll find useful and informative. I can understand how worried and anxious you're feeling about the surgery and I'm sure we'll also have other members who'll be able to chime in with more help and advice.

 

Please also let us know the results of your blood tests and how you get on with your rheumatologist's appointment next week.

 

Kind regards, 


 

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#5 Jeannie McClelland

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Posted 03 July 2014 - 05:45 PM

Hi Brianala, I'll add my welcome too. I was diagnosed with SSc in 2006 and at the same time with Raynaud's, pulmonary fibrosis, and pulmonary fibrosis. I had a full Nissen fundoplication about a year later, done laparoscopically. Prior to the surgery I was having constant, severe reflux. My fundoplication has worked extremely well. After an endoscopy last year, I am pleased to report it has held up beautifully.

There seems to be a lot of controversy in the last couple of years about whether fundoplications are truly beneficial or not in cases of esophageal dysmotility. I don't think there has been either sufficient time or rigorous studies since fundoplication has become more commonplace in such cases to be able to say for sure. In my case, I think it was a life saver, not just because it lessened dramatically my aspiration risk, but also because of a substantial improvement in my quality of life.

Would I do it again? You bet!
Jeannie McClelland
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#6 brianala

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Posted 08 July 2014 - 04:03 AM

Thanks, Jeannie! I really appreciate your perspective!