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Finally got results from Nissen Failure

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GERD & Acid Reflux
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Posted 7/22/2013 2:43 PM (GMT 0)
 Hi everyone,just an update as where im at after a nissen fundoplication I had done in Feb.2012.

  I had nothing but problems since the surgery ie.swallowing problems,nausea,reflux etc and the surgeon didn't seem to understand why I was having these problems and just avoided me. I went to another surgeon approx. a year later who carried out testing scan,manometry,ph test and endoscopy and barium swallow.

 Ct scan everything normal,endoscopy showed wrap still in place, ph test showed no reflux? Barium swallow showed a very large wrap with regurgitation of liquid in esophagus. Manometry showed I have a swallowing problem and my esophagus is not emptying properly.

 Surgeon states at end of the letter that I have limited options,very risky to operate again and suggests I try to live as I am. Very disappointed to say the least! Barry

Posted 7/22/2013 5:31 PM (GMT 0)
Hi Barry,

Sorry to hear your news.  From all that you've described, it seems you have a wrap that is too tight in the worst possible circumstance...a swallowing problem.  I know that surgeons don't like to touch wraps if they're intact and holding acid in the stomach.  That said, it's asking a lot for you to be told, "Live with it".  So, where to go from here.  There certainly is some course of action out there for you.

First, is modifying eating habits in an attempt to work with what you've got.  I suspect you've already done this, but just in case--see if there are some things you can do to create fewer problems.  If that fails, then of course, you need to pursue further medical opinions.

I don't know how many wraps are done where you live.  If there are few, I suspect that's the hesitancy in taking down your wrap to create a looser (perhaps partial) wrap that can allow you to swallow even with your dismotility.

Even in this country, many surgeons aren't qualified or experienced in redoing wraps.  Still, there are surgeons who specialize in that sort of repair.  At least you have a better idea now of what is going on and why you're experiencing problems.

We're with you in spirit.  Hang in there!

Best wishes,

Denise

Posted 7/23/2013 10:22 AM (GMT 0)
Hi Denise,thanks for your support.Im going to meet the surgeon in person as his letter is quite brief and I have a lot of questions. I feel he basically doesn't know whats wrong and doesn't want to go in there and maybe make things worse. Surgeon states that I definitely have a swallowing problem but cant say if I had it pre surgery or the surgery has caused it?
I never had a swallowing problem pre surgery unless it can go unnoticed,also he said my ph test showed no reflux which is strange as I have heartburn when not on any medication.Also my condition improved when I started back on ppis after surgery.Maybe I wasn't off nexium long enough?
I think your right Denise,i have to find a surgeon who is a specialist in redos,my gut feeling tells me my surgery has not been done correctly. Thanks! Barry
Posted 7/23/2013 11:10 AM (GMT 0)
Barry,

Very sorry to hear your bad news. Don't give up, sounds like you need to go to the Mayo clinic and see what they have to say. Best wishes!

Posted 7/23/2013 12:24 PM (GMT 0)
Hi Doggbones,i would if I could, 4000 miles away is a bit to far im afraid as im from Northern Ireland. Theres only one surgeon in this country does a Nissen would you believe. I travelled from here to the Uk mainland to get tested by another surgeon.Its very hard to get information on surgeons over here,where as in the USA you can chose whoever you wish and get all the info on that surgeon.
Its a Pain. Thanks for the support! Barry
Posted 7/23/2013 12:53 PM (GMT 0)
Hi Baza,

I'm sorry to hear your news also. I would keep knocking on doors until you get somewhere and I'm sure all those members who've done more than one lap (!) of the surgical route will have lots of words of wisdom for you!

MMM
Posted 7/23/2013 12:55 PM (GMT 0)
PS: nausea was a big big issue for me until I learned these three things:-

1) I need my PPI at night in order not to wake up feeling sick
2) Gaviscon and Carafate CAUSE me to have nausea or worsen it
3) Acupuncture has helped me hugely and I now have very little nausea

MMM
Posted 7/23/2013 2:16 PM (GMT 0)
Hi MMM,thanks,i know Bill on this forum has been down the road im on and he eventually got sorted so that gives me some hope.
Nausea is just a way of life for me now,this may sound odd but I just expect to get it after eating and I just live with it.Im on h2 blockers now and I feel better on them than nexium which seems odd aswell.
thanks.Barry
Posted 7/23/2013 7:11 PM (GMT 0)
Barry-

What you are going through seems so very familiar to me. I wish you were in the States. I was lucky to have been referred to a surgeon who specialized in redoes and swallowing issues.
A trick I used to help things go down, if they are hanging up, was to dip some foods in things like salad dressing or sauce of some sort. While this wasn't the best idea weight wise it did allow me to eat a bit easier.
DON'T give up! There has to be someone who can help you. Did they do a manometry before your surgery?

Take care,
Bill
Posted 7/23/2013 8:01 PM (GMT 0)
hi Bill,ive read all your posts and it gives me some hope that there might be an answer to this. My surgeon did not do a manometry test and this seems to be what my problem is.He and his team are adamant that the test is not necessary,well I think they've been just proven wrong.If theres nothing wrong why has he distanced himself,he should be trying to help,not run away.
Ive arranged a meeting with this other surgeon who has carried out all post op testing,im going to ask why cant a 270 wrap be done. Thanks. Barry
Posted 7/23/2013 11:00 PM (GMT 0)
Hi Barry,

Which surgeon and at which hospital did you get your 2nd opinion on the mainland?
I can't believe there's only one Nissen dude in NI, it's not that small!!!
Posted 7/24/2013 8:08 AM (GMT 0)
Hi Mollymarie, I went to Newcastle,the team is called NUGITS who specialize in gastric problems.I must say I have been treated very well by them,they listened to what I was saying and were very understanding.All my testing was carried out in one day.
I can say the opposite of the treatment I received here at home,before the surgery they were ok but after when the problems arose they turned very defensive and avoided me. Barry
Posted 7/24/2013 11:37 AM (GMT 0)
It makes you wonder how much experience they had or how many others have gone wrong!!!!
Posted 7/24/2013 12:11 PM (GMT 0)
hi mollymarie, I asked surgeon how many nissens he had done pre op and he said one hundred and that sounded enough to me.I also asked about success rate and he said a lot of people complain of bloating and have trouble with certain foods but you will have no reflux.
I wish I could go back in time and researched a few more surgeons as I think I should of had a partial wrap. I have to take the blame myself. Barry
Posted 7/24/2013 12:52 PM (GMT 0)
Definitely don't blame yourself, a surgeon shouldn't be offering the surgery if he's incapable of doing it! I don't know how experienced my surgeon is in redos but I know he's a Nissen man as opposed to toupet one. He's in Manchester if you ever want to see anyone a bit closer.

Big hugs xx
Posted 7/24/2013 1:49 PM (GMT 0)
Your surgeon or your GI doc sounds incompetent. How can he do a wrap without checking for throat motility first? Years ago I was sent to see a surgeon by my GI doctor without even doing a PH test. I told the surgeon I wasn't prepared for surgery without the proper testing and he totally agreed and was shocked I hadn't been tested properly either. Praise the lord I have a new GI doc as the last useless one took an 'early retirement'.
Posted 7/24/2013 2:35 PM (GMT 0)
Hi mollymarie,who is your surgeon,if you don't mind me asking? Ive done a lot of searching for surgeons in the Uk,there hundreds but how do you know if their anygood.

Hi Albez,i don't why manometry wasn't carried out but the surgeon told me a barium swallow is standard test before the surgery.He said he does a loose floppy wrap and seems to be what he thinks works.
I think hes wrong in that the swallow problem can be further up the esophagus and you can get a hold up before food reaches the wrap.
Thanks.Barry
Posted 7/24/2013 5:35 PM (GMT 0)
I googled my current surgeon and he seems to have plenty of experience but with the NHS it's a lottery who u get and how they perform on the day. I did ask mine if he had plenty of experience/success with doing the nissen but then again I dont suppose he is hardly gonna say he's had lots of failures. Just have to hope for the best. Hope u get your redo and it all works out for you.
Posted 7/24/2013 5:54 PM (GMT 0)
Barry

I blamed myself for a long time as well, and still do a bit for mot researching him further. I only asked if he could do the surgery and of course he said "yep". He did require me to get a manometry though since I hadn't had one yet.

I have come to terms with it and try to let everyone I can know what should be done pre op and what to expect post op.

I have to think he inflated his experience or didn't bother to tell you of his failures. After having dealt with this type of surgeon and the type who tells you everything up front an completely honest, I'll choose the latter everytime. It was a hard lesson for me to learn. The group you are seeing sound like they have more experience and I hope they will be able to help you.

Take care,
Bill devil
Posted 7/24/2013 10:37 PM (GMT 0)
Barry,
If you want to email me I can give the details.
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