13 year old NF is failing.

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Suebee1
New Member


Date Joined May 2013
Total Posts : 3
   Posted 5/26/2013 7:48 AM (GMT -6)   
First of all I want to say I found this forum by accident! Where have you all been for the last 13 years. I have lived thinking that I was the only person with a Nissen that has ever had a problems.

Hello Everyone. I am 63 years old and had my full wrap in 2000. I had the surgery they nicked my spleen, had to do a open surgery and spleen removal and after losing 40 pounds and being miserably ill for several years had to have my gallbladder removed. Needless to say I had a rough start. The surgeon treated me like a germ as I had ruined his perfect record of success stories for perfect Nissen surgeries.

The remaining years haven't been without issue. All kinds health issues, most all gastric related. Diarrhea, horrible pain in gallbladder area,nausea, IBS and in 2007 diagnosed with MS and Fibromyalgia.

I worked full time through all of this and in June of 2012 went part time. I have to continue working to keep health insurance to pay for
all my gut issues. I must say though I haven't had heartburn as my
nissen was so tight.

Now i am being told I need a revision as my heartburn is returning. I am so sick over this. Does anyone have any encouraging words of wisdom for me. I have been referred to a surgeon two hundred miles from my home. I am not letting them cut on me until I am sure the surgeon knows what he is doing and if in fact it is the reflux that has returned. What can you tell me about the revision surgery?

stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 5/26/2013 9:34 AM (GMT -6)   
Sue,
 
Welcome to HealingWell and I am so glad you found us.  This site was started in 2003 and this particular forum has been very active so I hope we can help you.
 
I have not had a NF, however, one of our Moderators, Bill, has had redos so I am posting a link to his story.  I know he will be along to talk with you as well as other members will respond to your questions also.
 
Here is the link for Bill's story;  just click on the link:
 
 
I am glad you are going to advocate for yourself and make sure the surgeon you choose is someone you feel confident in.
 
Blessings to you,
Kitt
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.



"The wind blows, the sun rises, the snow falls and the ocean relentlessly pounds the shore. Life rolls on with fresh new possibilities at every turn."

Suebee1
New Member


Date Joined May 2013
Total Posts : 3
   Posted 5/26/2013 5:20 PM (GMT -6)   
Thanks for the reply. Great to know there are others out there. I am going to start with my primary care Dr on Monday and possibly get another gastrologist on board. Appreciate any encouragement anyone can give me.

reet22
Regular Member


Date Joined Jan 2013
Total Posts : 146
   Posted 5/26/2013 5:35 PM (GMT -6)   
Hi Sue I was interested in your story. I had my nissen op in 2001. Although I had a rough time initially it was not nearly as bad as you. Also I found this site by accident but upto now I have not known anyone who has had this operation probably due to me living in the uk (really a small country compared to yours) I am 64 years old and 3 years ago my heartburn came back. I have had numerous tests with only the barium x-ray proving positive for reflux needless to say all the Consultants will not undertake another operation and as I can't take the various medicines available I am just relying on carafate to coat my oestophogus. Please if you have to, take all tests available just to check if your symptoms are the reflux before resorting to another op. Good luck Rita

Suebee1
New Member


Date Joined May 2013
Total Posts : 3
   Posted 5/26/2013 5:47 PM (GMT -6)   
Thanks for the post Rita. I am going to ask that they do just as you say and test everything before I have another surgery. It iis good that they are ablle to at least give you carafate. Have you ever been given the Prilosec or Nexium or are they the drugs you cannot take? Thanks again for the reply Rita, like I said before I am so happy to find some people to talk to.

reet22
Regular Member


Date Joined Jan 2013
Total Posts : 146
   Posted 5/26/2013 6:09 PM (GMT -6)   
Hello Sue all of the different medicines affect me in different ways, I can cope with the acid reflux at the moment just working 2 afternoons in a local corner shop. The result of taking nexium even on lower dose means not moving from home for fear of wanting to go to the toilet too much(if you get my drift) I am getting such a lot of advice from this forum as to how people are solving their reflux problems. Take care Rita

Lennyz
New Member


Date Joined Oct 2013
Total Posts : 2
   Posted 10/14/2013 2:11 PM (GMT -6)   
Just found this forum and I can echo what most people say in so far as I thought I was pretty alone in my experience.

I weigh about 11and a half stone and am fit and active.

I too am in the uk and know no one else that has the operation in common with me. I had a Nissen in 1989 at the age of 20. I am now 45 and the acid pains have returned but with a reduction in severity from what I remember before I had the op. I have had 25 years of complete absence of symptoms.... Till about a month ago. The pain I have now is more discomfort but it comes along regularly during the day whatever I eat, increasing in severity just before a meal then largely disappearing after eating. I have been put on lansoprazole since seeing my doc 6 weeks ago and referred for an endoscopy next month. I have a dread feeling that my hernia repair has now partially failed and will need to be re done.

Just found the forum and am looking for other peoples experiences of having this operation re visited. When I originally had the surgery done there was no such thing as lapiscopical methods so it was extremely invasive. I would like to know that they can do the same quality of job without being so invasive. Any thoughts would be welcome. Just wanted to add my experience.

Thanks

opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 10/16/2013 12:54 AM (GMT -6)   
Lennyz

Welcome to Healing Well.

I have had 2 redoes, 1 lap and 1 open. I had an easier recovery with the open surgery, but I had just had surgery to repair a torn esophagus 6 months prior.

Since your was originally done open they may have to do it that way again. It depends on how much scar tissue and such you have.

My redoes have been much better than my original nissen as it was done incorrectly. The link Kitt has farther up on this post is a link to my story of 3 nissens ans a torn esophagus.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn, Kidney disease

Nissen 6/06 and 5/09
#3 8/24/11

Lennyz
New Member


Date Joined Oct 2013
Total Posts : 2
   Posted 10/16/2013 3:16 PM (GMT -6)   
Thanks Bill,

You really had a rough ride didn't you! It does really suprise me that you say the recovery from the open surgery was quicker and less troublesome than the lapiscopical. The recovery from my Nissen was three months. I did have to have the op done twice because as soon as I was in post op I had hiccups and it tore the surgery up, necessitating the op being done again the following day. That was a low point, signing the consent form again...

As I said it was 25 years ago. I was unaware that this op could fail after time, it was news to me but my mum admitted to me the other day that she was told I could have problems in my mid 40's. I am exactly that now so, prophetic wasn't he.

It is crazy the trouble you had getting the oesophagus punctured by an endoscopy! Never gave a thought to any risks associated with such a procedure. I have one booked for next month but am worried that they won't be able to discern any damage to my original op site? Don't understand the mechanics of it really but I would imagine a barium meal would show the shape better? Who knows? Maybe I will be sent for one soon after.

Getting pain every day about two hours after meals but eating takes it off again. Not getting reflux into my mouth like I used to get pre op. But I am getting a raw feeling and burning. I have also had burning in the night after eating pastry. I avoid that at tea time now.

Thanks very much for the feedback Bill.

Paul
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