Is the Nissen worth it?

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Gooserstein
Regular Member


Date Joined Apr 2013
Total Posts : 57
   Posted 4/4/2013 2:37 PM (GMT -6)   
Hi Everyone,
I'm 27 female and in great health. I'm of average weight. I work out a lot. But I have chronic heartburn. This runs in my family. My father has it and his father and so on. It was very manageable for me with OTC PPIs since I was 20. Then last summer, I developed several bad episodes. Nothing really helps. I feel burning every day. Every so often I have severe pain, that takes my breath away, but I have learned to mitigate this pain through various lifestyle changes (avoiding alcohol, sleeping on an incline, etc).
I was evaluated by a surgeon in Tampa (Rosemurgy/Ross) who confirmed that I have reflux with endoscopy and the bravo pH. My endoscopy showed no hernia but a completely flaccid sphincter. My DeMeester Score was 30.8 and 23.3 (both elevated). My doctor has scheduled me for the single site laparoscopic Nissen in May. I'm both excited and nervous.
On one hand I can't imagine allowing this GERD to continually control my life. I can't eat after a certain time. I have to sleep on 8 pillows (traveling is difficult) and it's uncomfortable. I know taking 40mg Protonix (which really doesn't work) for the rest of my life will cause osteoporosis and perhaps place me at risk for a GI infection. I don't want Barretts.
On the other hand- I'm scared that this surgery will ruin me. I don't want permanent dysphagia or dumping syndrome.

I would really appreciate some insight on other's personal experiences. What do you think about your Nissen? What was the experience like for you? Is there anything that I should be prepared for?

Gastricman
Regular Member


Date Joined Jan 2013
Total Posts : 294
   Posted 4/4/2013 3:01 PM (GMT -6)   
Hi Gooserstein,
 
Welcome to Healing Well!
 
There are some great people here to guide you with the NF and i'm sure that they will shortly chime in.
 
By the way, have you ever considered the Linx Procedure?
 
Here is a link for you to our Linx Club thread...
 
Just wanted you to be aware of this option. Everyone is different.
 
Best,
 
Gastricman :-)

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/4/2013 3:22 PM (GMT -6)   
I had the 270 degree wrap and it was well worth the recovery and money.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Gooserstein
Regular Member


Date Joined Apr 2013
Total Posts : 57
   Posted 4/4/2013 6:08 PM (GMT -6)   
Thanks for the replies. I have never heard of the linx procedure. That's pretty interesting.

I think I'm just nervous about the procedure. I wonder if my heartburn is bad enough to warrant it. That said I'm currently recovering from aspiration pneumonia from my GERD. I'm just nervous about the long road of recovery.

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 4/4/2013 8:22 PM (GMT -6)   
Hi Gooserstein,
Welcome to Healing Well!  If you've had aspiration pneumonia, you should seriously consider surgery. I have asthma and it was made uncontrollable by reflux that was measured twice through a wired pH probe.  My first DeMeester score was 4, and my second was just over 14. Both of those are considered in the "normal" range.  Because of that, it was a real struggle to get my GI doc to believe my asthma was reflux related.  That said, my lungs were in a dangerous condition and my asthma doc and PCP both were very confident that the reflux was causing my problem.  Finally, mainly due to the heroic efforts of my PCP, my GI doc referred me to a surgeon.  I had a Nissen fundoplication surgery a little over four years ago, and only wish I'd had it sooner.
 
Like you, I had fears of dumping and swallowing issues--mainly because of reading scary online posts.  Over the four years I've participated on this forum, I've decided that many of those posts are written by people in early recovery who are panic stricken and afraid that they will always have the problems they are having in the early weeks.  Of course a few are due to poor surgical skill, as this surgery requires an experienced skillful surgeon who has done many Nissen procedures.
 
From my experience here, it seem that most surgeons don't prepare their patients for the recovery.  Either they just don't know what it's like, or they don't want to scare their patients away.  That said, I was prepared for a horrible recovery experience, and was very pleasantly surprised.  The recovery is a challenge, there's no arguing that, but it's very manageable, especially if you're prepared and have a good attitude.  If you can surrender to your recovery and just follow its lead you'll do just fine.
 
I only wish I'd had the surgery earlier.  I wasted several good years to being a very sick person.  The surgery cured my lungs and I'm very happy with the results.
 
Here's my early recovery journal, just to give you an idea of one person's experience:
 
While there are quite a few people here who've had or are considering the LINX surgery, the Nissen fundoplication remains the gold standard for reflux control.  I have never found a GI doc who recommends it, although they're obviously out there. 
 
Good luck with your search for answers.  Glad you've joined us!
Best wishes!
Denise

GERD/Heartburn Moderator
Nissen Fundoplication 2/09
Allergy/Asthma

"Whatever you fight, you strengthen, and what you resist, persists.”

“Worry pretends to be necessary but serves no useful purpose”

“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”
Eckhart Tolle

cat98037
Regular Member


Date Joined Feb 2013
Total Posts : 80
   Posted 4/4/2013 10:26 PM (GMT -6)   
Hi Gooserstein.

You will find this forum to be very useful as to what to expect and also extremely supportive. Denise has helped me a lot and it's true what she said......thought post op would be horrible and she was pleasantly surprised. The same holds true for me. I just had my wrap on Tuesday. I went into the surgery sick. I had aspirated twice, developed pneumonia and was in the hospital twice.....all since November 2012. I have been on steroids since November as well. Iam glad that I've had the surgery. I'm fresh post op but I am able to lay down flat and so far, my reflux has disappeared. I expect bouts of it, tho, as I've read that you can experience heartburn periodically post op. Finding a good, experienced surgeon is crucial. They should be able to tell you how many wraps they have done......my surgeon has done over 800 NF. As far as the LINX, I agree with Denise. Also, since the LINX is fairly new, a lot of insurance companies are not covering it. Also, if you ever needed a MRI, you would have to get the LINX removed. Sometimes, MRI's can be emergent. I would not want my emergent condition to have to wait for treatment because I had LINX. Just something to think about.

Good luck with your decision but please know that you must move forward. If you have aspirated, you will not get better until surgery.

Tarachriso
Regular Member


Date Joined Mar 2013
Total Posts : 88
   Posted 4/5/2013 7:23 AM (GMT -6)   
IF I can say one thing it's that my Acid is gone I for the first time in my life can sleep on my back or lay flat and have no acid. that is amazing to me. I personally could not live any longer with out it but I think my case was the extreem. But here for questions if you need advice.

Gooserstein
Regular Member


Date Joined Apr 2013
Total Posts : 57
   Posted 4/5/2013 8:59 AM (GMT -6)   
Thank you so much for the info everyone. I'm not really considering the Linx since I'm sure my insurance wont cover it. My surgeon has done over 1000 NF. He's doing the single site through my belly button. He's confident that I will recover quickly and get on with my life.

I think at this point I'm just scared of the operation. I've never been under anesthesia or been cut open for that matter. At the end of the day, I know that if this goes well I can finally sleep on my back, lay down after a long day of work, and maybe even have a glass of wine one day. I don't really care that I have to change my diet at first. I'm wondering how long that will last, and I'm seeing that it varies from person to person.
Thank you so much for the support. No one else really understands.

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 4/5/2013 9:35 AM (GMT -6)   

http://onlinelibrary.wiley.com/doi/10.1002/bjs.4934/abstract;jsessionid=FA7A14C89AAAF7BEE6649F92CD14C354.d01t04?deniedAccessCustomisedMessage=&userIsAuthenticated=false
 
 Hi

You may find the above to studies useful. I read an older one somewhere in which basically the two groups (surgery vs medication group) pretty much broke even, but the surgical group reported better quality of life. But the links above support the success of surgery - with a satisfaction rate of 90%.

Remember that here on the forum we may see more of the people who have had some trouble after surgery than the ones who recover well! Most of that 90% is out there having a good time and not writing on this forum!

MMM
 
edit...trying to make links clickable.  For some reason the second one won't work, but needs to be copied and pasted.  The first one clicks fine...

Post Edited By Moderator (dencha) : 4/5/2013 9:55:12 AM (GMT-6)


mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 4/5/2013 9:36 AM (GMT -6)   
PS: Sorry you'll have to cut and paste - I did post them as URLs but it didn't work!
GERD (over 2 years)
Lifelong stuff: Food allergies/intolerance, eczema, asthma

Gastricman
Regular Member


Date Joined Jan 2013
Total Posts : 294
   Posted 4/5/2013 9:54 AM (GMT -6)   
Hi Gooserstein,
 
You said that your surgeon has done over 1000 NF surgeries. What is his success rate?
Would you also like to share his name and location with us, since it might help someone?
 
Best,
 
Gastricman :-)

Gooserstein
Regular Member


Date Joined Apr 2013
Total Posts : 57
   Posted 4/5/2013 11:37 AM (GMT -6)   
Thanks for the link MMM.

My surgeon is Dr.Rosemurgy and Dr. Ross at Florida Hospital Tampa. I don't live in Tampa. It's a few hours from me. However, I couldn't find a very experienced surgeon closer. I'm a nurse in graduate school to be an ARNP and I've followed GI services before. Some can be real butchers... Which is probably where most of my fear stems from.

I keep debating "is my reflux bad enough." I think at this point that I'm pretty use to the lifestyle changes- sitting up while sleeping, avoiding alcohol and stimulants, eat no later than 3 hours before bed, never overeat, etc- that I have forgotten what it used to be like. I can't sleep flat- this is my main impetus for the surgery. I did during my bravo study so it would read correctly and now I have pneumonia. I don't always feel pain but I feel burning every day (usually mild). Dr.Ross did my bravo placement and endoscopy (I was awake) and she showed me my LES. It wouldn't close. So, I guess unless I want to deal with this forever I just need to gather my courage and do it.
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