Nissen Funduplication surgery problems continue

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GREYGHOST
Regular Member


Date Joined Sep 2010
Total Posts : 79
   Posted 5/17/2011 9:59 AM (GMT -6)   
Just to let everyone know about this surgery and what you might expect from it. I had this surgery done on me on 9/01/10 and ever since then, i have been having problems of food rejection and vomiting as well as chest pain. New tests as to find the cause of this problem were a Esophageal Motillity Study, a 24 hour PH probe analysis and a barium swallow. The findings of this study were not pleasant to say the least. I have damage to the lower LES - Lower esophageal sphincter. The LES fails to relax, creating a barrier that prevents foods and liquids from passing into the stomach and the nerve cells responsible for relaxation are destroyed by an unknown cause. Somewhere at the LES, Esophageal dysmotility develops as the smooth muscle of the esophagus is replaced by SCAR TISSUE, gradually leading to progressive loss of peristalsis and a weakening of the LES. Now, the real problem begins as to how to correct what has already been done. This can lead to a term called Achalasia which require surgery to cut the muscle fibers of the LES to correct the problem. All i can say to anyone who is about to have this procedure done on them, RESEARCH others who have had this done on them and be very well known about the doctors who perform this type of operation. WE are not all the same and what might work well on one person, might not work on you. As for me, i am worse off right now than what i was before the surgery. PLEASE make sure that you doctors do all the necessary testing on you, before you have this surgery done!!! Thanks Greyghost

Gritty
Regular Member


Date Joined Mar 2011
Total Posts : 82
   Posted 5/17/2011 12:27 PM (GMT -6)   
Sorry to hear things didn't work out. I think a lot of it comes down to the care you receive before surgery. I was lucky enough to be treated by the superb team in Manchester UK who over a year gave me all manner of tests, suggested many alternatives to surgery from different PPIs to changing my diet and exercise routine. Only when all avenues were exhausted was I 'allowed' to have the surgery based on the various endoscopies, PH and swallow tests.
My symptoms at the time of surgery were a lot more mild than other people on this forum but I was still on 80mg Nexium a day which was severe enough to be considered a candidate. The surgeon who carried out my op was an Upper GI specialist who runs his own private weight loss clinic as well as working for the NHS and he has done hundreds if not thousands of these procedures.

My surgery went very well and I'm enjoying a life free from the pain of reflux but that's only because everyone involved was confident it was a suitable option. I agree it's very important to research this fully beforehand but to anyone who's in two minds I'd like to say that there is around 87% success rate for this procedure. In your case Greyghost, it could be that this perhaps wasn't the right way to go for you and that your symptoms should have been treated some other way. I hope they are able to do something for you as it sounds like you are having a really tough time with it. In any case you can count on the support of everyone on this forum, all of whom have suffered with similar problems in one way or another. Keep us informed of how you are doing, it's really important that people get to see both sides but it's also important that people don't get unnecessarily scared of this procedure.
All the best, Jon

kyheart
Veteran Member


Date Joined Apr 2011
Total Posts : 513
   Posted 5/17/2011 7:21 PM (GMT -6)   
Greyghost
I too, am sorry to hear that you are having so many issues since the surgery. I for one, have had the surgery and I feel blessed that I had it done. 80mg a day of Nexium for over 2 years and a history of PPI's for a total of 8 years, waking up several times a nite to jumping up and running to throw up and coughing most of the nite.. these are the things I now can joyfully say I do not have any more thanks to the NF. I also had a large hiatal hernia that was repaired at the same time. My Nexium is a thing of the past and I no longer have to depend on a rescue inhaler for my asthma. I found out that it was Reflux induced Asthma.
Please continue to try to find a fix for what has gone wrong for you. I truly hope the doctors will find something to help you quickly!
and please consider this forum your friend... whether the people here can relate to your situation or not, we will always listen...
Sandi

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 5/17/2011 7:50 PM (GMT -6)   
Dear Bob,
It hurts to hear you describe the problems you continue to have. I am glad that you have had more testing, and sorry to hear of the problems they uncovered. Hopefully, now that you know what is going on, there is someone out there who can help repair the damage that has been done.

Thank you for reminding others to approach this surgery carefully, and to be sure that they find a highly skilled and experienced Nissen surgeon. I think that it is absolutely inexcusable that your surgeon went forward with the surgery without doing the proper testing. It certainly does not appear that he was properly qualified to do your surgery, and you have been paying the price for his errors. I can only imagine how frustrating and maddening that is.

I truly hope that you find an answer to your problems very soon, and begin to be able to eat properly and enjoy life again. Please know that you still have friends here who care about you and wish you the very best.

Good luck with your quest.
Denise

GREYGHOST
Regular Member


Date Joined Sep 2010
Total Posts : 79
   Posted 5/18/2011 1:49 PM (GMT -6)   
Jon, Sandi and Denise : Thank you very much for your replies. Needles to say, i am very mad as to the outcome of my surgery and now the quest to find a doctor to correct this surgery if at all possible. Living in Western North Carolina, there is not many places one can choose to go to a hospital and receive decent care. A 4 hour drive from here over the mountains to Duke Hospital is a possible idea for now if deemed necessary. It is a real shame that doctors who preform this surgery do not order more testing to find out a cause for ones problems, before any surgery is done as we are not all the same. I am pleased to hear of your success and for all of you, i hope it continues. My LES area is of great concern as that is where the major damage is located. Still on liquids and soft foods - nothing solid - 8 months of this and no end in sight. Thanks again for your replies. Greyghost

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 5/18/2011 3:55 PM (GMT -6)   
Hi Bob,
Hang in there. It sounds like Johns Hopkins might be a great option for you. You are absolutely right that before having surgery all the tests need to be done to ensure that the Nissen will help what's ailing you. I'm so sorry that this has happened, and I wish you all the best in finding a solution.
Take care,
Denise

GREYGHOST
Regular Member


Date Joined Sep 2010
Total Posts : 79
   Posted 5/19/2011 7:46 AM (GMT -6)   
Hello Denise: Thanks again for your reply as it is appreciated very much. My doctor called me last night to let me know that there is not much she can do for me, as she is also quite upset as to the way this surgery was done without the necessary tests that should have been done before the surgery. She is going to put me on some type of medication to EASE the muscles so that food can pass into the stomach. I shall have to record everything i eat and the problems associated with this. From the EASING of the muscles - the main problem to arise from this is the fact, that stomach acid shall be able to flow into mt throat once again - something that this surgery was to prevent from taking place. I have been in contact with Duke Research Hospital here in North Carolina and they have e-mailed me back saying that they would like to talk to me about this. Some hope shall be appreciated. Other than that, i really do not know what to do as this condition shall get worse over time if something is not done to correct what has been done. Your help is always appreciated Denise - take care - Bob

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 5/19/2011 9:06 PM (GMT -6)   
Hi Bob,
I can certainly understand your frustration and anger about your medical situation. I would definitely urge you to seek out additional help and opinions at Duke, should you not find relief with the treatment you are starting.
Again, so sorry. You know you have my support. Any time you need to, vent away.
Take care,
Denise

GREYGHOST
Regular Member


Date Joined Sep 2010
Total Posts : 79
   Posted 5/22/2011 8:34 AM (GMT -6)   
Hello all: Just an update - I am to have another barium swallow done on me 5/23/11 in order to see how my wrap is working in conjunction with all of my problems. From what i have heard and read online, a Toupee Fundoplication wrap is one of a wrap of 160 to 180 degrees of which was the type of wrap done on me according to my surgeon. Yet my wrap is one of 270 degrees according to his report and medical records i have received. So knowing about this, is this the major cause of the LES problem??? Been in contact with Duke Research Hospital and waiting to hear from them to see if they have a surgeon that can do the necessary surgery needed to correct my problem. Again a huge thanks to all of the people at healing well and the people who read these posts. Your a great group of people to associate with and without your needed help and support, i really do not know as to what i might have done. Take care Bob

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 5/22/2011 8:51 AM (GMT -6)   
Hi Bob,
I'm sure that a less aggressive wrap might have worked better for you with the problem you've found regarding your esophagus. I wonder why he was going to do a Toupee...did he know that you had swallowing issues? From what you told me, he never did a manometry, so how would he know?

If he ended up doing a more aggressive wrap (270) I suppose it could make it more difficult to swallow. I don't think it would have made your LES unable to open. I presume if he nicked the nerve that controls your LES, it could have caused it, but I'm no doc, so I have no idea, really.

I'm so glad that you've been in contact with Duke Medical. I fervently hope that they will find a way to help you with this. At least you've got people working on it. It seemed like for a while you were in a holding pattern.

Good luck with your quest! I hope you find answers soon.
Denise

GREYGHOST
Regular Member


Date Joined Sep 2010
Total Posts : 79
   Posted 5/22/2011 3:15 PM (GMT -6)   
Hello Denise: I wish i had all the answers to my problem. Most of this is my fault for not having a Family Doctor and letting others pick out doctors for me. Then the lack of communication between the GI doctor and the surgeon is what made this a huge mess for me. The surgeon claims that he did what the GI doctor told him to do and with a history of Barretts, he thought the necessary testing had been done. SO, Curly and Larry (2 of the stooges) went and did what they thought was the right operation for me - what can i say except that i wish i could operate on them!!! Denise, all i can say is that with these tests being done on me, i just hope that we can get an answer to correct the problem even if i need to go to Duke. Thanks again Denise - take care - bob

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/22/2011 4:56 PM (GMT -6)   
Greyghost, it's lucky Moe wasn't in the act too, or who knows what would of happen.

That's why communication is so important between the doctors. Someone dropped the ball on you and I believe you need to call foul in the loudest tones and send them to the penalty box.
Joy

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 5011
   Posted 5/22/2011 7:26 PM (GMT -6)   
Nissen is 360 degrees posterior wrap - wrapped around back, and the fundus is stitched together in front of the esophagus.  It can be made "floppy."
 
Toupet fundoplication is a 270 degree posterior wrap, stitched to the esophagus.  Toupet is often used when there is a problem with esophageal motility. 
 
Belsey is 270 degrees anterior.  Dor is 180 - 200 anterior. 
 
Hill posterior gastropexy is another 270 degree posterior wrap, but the difference between it an Toupet is Hill is stitched across the esophagus, not to it, and it's attached to ligaments.
 
There are lots more wraps and procedures.  There's a good article in Nature that describes them with diagrams.  You can do a search.

GREYGHOST
Regular Member


Date Joined Sep 2010
Total Posts : 79
   Posted 5/23/2011 7:38 AM (GMT -6)   
Joy and Alcie: Thanks for your replies. JOY - this is what i intend to do by every means possible. Alcie Had the testing been done before the surgery for a esophageal motility study, a barium swallow and a 24 hour Ph probe study, I really do not know what i might have ended up with. I appreciate the information and help - now all that i need is a good doctor to undo it, and have it done right. All i know is that damage is done and my lifestyle is gone in the way i use to be able to eat and the gas, bloating, food rejection and vomiting - has me really upset to a boiling point. You both take care - Thanks BOB

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 5011
   Posted 5/23/2011 11:58 AM (GMT -6)   
Bob,
I know Dr. Luketich at UPMC Presbyterian in Pittsburgh does a lot of revisions.  You can search for him and his research.  He and his very good team have done thousands and thousands of Nissens and other ops.  They did my Toupet.  I'm not saying go there, but compare anyone else you choose to his standard. 
There's a good article by Dr. Blair Jobe, one of Dr. Luke's team at Shadyside in Pittsburgh:
http://www.nature.com/gimo/contents/pt1/full/gimo56.html
This explains a lot of the types of surgeries.

GREYGHOST
Regular Member


Date Joined Sep 2010
Total Posts : 79
   Posted 5/24/2011 7:47 AM (GMT -6)   
Alcie: thanks for this information - i shall check it out - Bob PS, i checked out this site and you were very correct and it has a lot of useful information that many can find helpful. Thanks Again
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