Nissen/ Who to Believe?

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Lallabee
Regular Member


Date Joined Dec 2012
Total Posts : 20
   Posted 1/10/2013 3:18 PM (GMT -6)   
Hi. I'm new to the forum, but have been stalking everyone for a couple weeks now. :-) trying to find answers.
I've been on PPI's for 10 plus years now. Currently I'm on Dexilant, which I have not seen anyone mention on here, yet anyway. The Dexilant does hlelp me a lot more than the others did, but I still have break through reflux, especially early morning while I'm still in bed, though not everyday.

I've jumped through all the hoops. Endoscopies, motility test, swallowing test, upper GI, etc.
Upper GI showed a small hiatal hernia, but otherwise normal, and the 24 hour test showed signifigant reflux even though I was on my Dexilant at the time.
Swallowing test was pretty much normal I believe, and endoscopy showed mild gastritis. My esophagus, though a little red, was actually a bit better than the one I'd had the previous year.
I might also mention that my maternal grandfather died from stomach cancer, so I'm considered high risk for stomach and esophegus cancer.
Digestive Health Specialist's highly recommended the Nissen for me and sent me to a surgeon.
I'd resolved that I would have the surgery, as I've read long term PPI use has it's draw backs (already suffered a broken rib) and the cancer issue.
I met with the surgeon yesterday, and she told me that with all the tests and reports, all ducks did not appear to be in a row and she felt the surgery would do nothing for me.
She said she'd done quite a few of these surgeries (didn't sound very competent) and decided to send me to someone who specializes in Nissen Fundoplication surgery ( as well as a couple other things).
SO...who would be the best at this decision? The Digestive Health Specialist's or the surgeon?
I'd made my resolve to have this surgery and now this, though maybe a good thing as the surgeon I have not met yet, at least specializes in the surgery.
Thanks for all the great info on this forum...and excuse my spelling.

ericapeace2000
Veteran Member


Date Joined Mar 2012
Total Posts : 1110
   Posted 1/10/2013 4:10 PM (GMT -6)   
I think the surgeon would be someone I would want to meet with. Especially if the surgeon specializes in Nissens.
GERD Moderator; Diagnosed GERD, no other medical conditions (this one is enough)

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 1/10/2013 7:29 PM (GMT -6)   
Hi Lallabee,
Welcome to Healing Well!  Glad you've come out of the shadows and signed up to chat!  If you can find a top Nissen surgeon (one who has done many, many Nissen surgeries--hundreds or 1000+) and is considered a Nissen expert in your area (or nearby large medical center), he/she will certainly put you through tests and be able to determine whether or not you're a good candidate. 
 
In my area there's one surgeon who "does all the Nissens".  That's the one to go to.  A good surgeon will determine whether or not you're a good candidate.  When I finally got referred to a surgeon (My GI sent me after several years of messages from my PCP and asthma docs--they don't love referring people with atypical reflux symptoms like LPR and asthma issues). 
 
Anyway, the surgeon, though somewhat concerned that my reflux levels were not very high (borderline normal), said that if the reflux was making my asthma worse, the surgery would fix it.  And it did!
 
My asthma doc sent me to "the surgeon who does all the Nissens" to see if my allergy lung issues were actually reflux related.  After going through the testing, he said that everything looked good and my wrap was working fine.
 
When I mentioned to the surgeon how important it was to have an experienced and skilled Nissen surgeon to do the procedure, he said it was equally important to have a patient who is right for the surgery.  That's the reason for all those tests, and the considered judgement of the surgeon.
 
Good luck with getting answers. 
Take care!
Denise
PS...here's my recovery journal, in case you're interested:
http://www.healingwell.com/community/default.aspx?f=45&m=2183443
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

Lallabee
Regular Member


Date Joined Dec 2012
Total Posts : 20
   Posted 1/10/2013 9:39 PM (GMT -6)   
Denise...Thank you for your post. The surgeon I saw yesterday said that the surgery was compared to cutting off my leg and having a prosthetic, in that it was a major surgery that changes your anatomy.
That was a bit much , considering she took her hand and sliced across my leg shocked
At any rate, I looked up the surgeon she referred me to and he was voted as one of the top surgeon's in my state.
So what you're saying is, trust the surgeon's advice? He does list the Nissen as one of his specialties, and the surgeon I saw...does NOT.
Even with all of the great info on this site, which I'm grateful for, there is just no easy answer. Sure wish there was idea

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 1/10/2013 10:13 PM (GMT -6)   
Hi Lallabee,
I had dangerously unhealthy lungs for 6 years, and was on high doses of steroids that has left my skin thin and fragile--tearing and bruising extremely easily.  Why?  Because my GI doc wouldn't refer me to a surgeon for a Nissen fundoplication, but even more, because I was fearful of the surgery and didn't push for it.  I understand not being sure...wishing it was easier.  Believe me. I get it.
 
A good GI doc will know which symptoms are best suited for a Nissen fundoplication.  Unfortunately, GI docs don't seem all that knowledgeable or comfortable wiht atypical symptoms like LPR/asthma.
 
It is true that a Nissen fundoplication is major surgery and it does make a change in your upper GI tract--creating a barrier between the esophagus and the stomach.  It is not true that it can be compared with amputation of your leg.  That's a ridiculous statement. 
 
Your LES is still in place when you get a Nissen, but the top of your stomach is wrapped to create a flap to keep stomach acid and food where it belongs.  It is true that a Nissen is not to be taken lightly, and shouldn't be done unless necessary. 
 
That said, a Nissen can be a life-saver and can improve your quality of life tremendously.  I was lucky to have a PCP who was persistent and pushed both me and my GI doc.  I should have helped him, but wasn't sure I wanted it. It's a scary decision, but an important one.  Because of the Nissen surgery, my lungs are again healthy.
 
My guess is that the surgeon you saw is not comfortable or confident with her ability to do it.  The most important thing you can do is research your surgeon and find one who is highly experienced in doing Nissens. 
 
A great, wonderful, outstanding, prize-winning, highly decorated surgeon isn't enough.  It has to be a great surgeon who is highly trained and experienced in doing the specific Nissen procedure.  It's an art form and one that has a learning curve. 
 
Make phone calls, get referrals, ask the surgeon how many Nissens he/she's done, what is the success rate.  Call around and see which surgeon people refer to do the surgery.  When you start hearing the same name over and over, that's probably the surgeon you want.  Don't be afraid to interview more than one surgeon.  This is the most important part of getting a Nissen.
 
I switched GI docs, and saw two surgeons before I got my Nissen.  It took several years to finally get to that place.  Persevere...don't give up.  You know how you feel.  Don't let anyone scare you away.
 
Good luck!
Denise
PS...what was your 24hr PH monitor DeMeester score?  Did you have high levels of reflux?  Just wondering.
 
 
 
 
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

Lallabee
Regular Member


Date Joined Dec 2012
Total Posts : 20
   Posted 1/10/2013 11:55 PM (GMT -6)   
That's just it. Even though I'm stressing on the surgery, I feel in my gut...no pun intended...it's the best proposition for me at this time.
Thank you for addressing the whole 'cutting off my leg' thing.
After my own research, I didn't feel that was the right, nor appropriate response, and even made me more leary of this surgeon.

Our first meeting was not good as she was in a huge hurry and had her arms crossed. She seemed irritated when I proposed 'another' question.
I was 10 minutes late for the next appointment, which was to discuss the findings of my upper GI...and she rescheduled. It was my fault for being late, but 10 minutes...but I was in tears.

I looked at reviews on her, and found only a couple. They were not attractive, saying she was cold, and that she had told one patient that she was 'stupid'. I realize a lot of folk only post when they're not happy, but really?
I guess I should be happy I was referred for the Nissen, but I'm frustrated right now.
I think you're right in that this surgeon does not feel confident.
My father passed in September of 2012, and after the appt with her, where she made me reschedule, I immediately went to call my husband because I was so upset, and when I opened my phone, there was a picture of my Dad. Weird because I hadn't opened that page...I felt it was a sign. OK...not what were talking about, but if anyone believes in signs, I felt this was a strong one.

Sorry to hear what a long struggle and process you went through, but am glad to take your advice in researching.
I already had another surgeon lined up to see just because of her reviews, but I think she referred me to an even better on.
OK..I feel I can breathe a bit...like I'm on the right track.
Thank you again!!

PS-I do not know my PH score but the report did say 'Significant reflux' even though I was on my PPI with the test.

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 1/11/2013 11:08 PM (GMT -6)   
Hi Lallabee,
You are on the right track.  If your 24hr PH monitor reported "significant reflux" you're an excellent candidate for a Nissen, and it is the right path.  Mine was never "significant" in the eyes of my GI doc, but in the eyes of my PCP and asthma docs, it was extremely significant!
 
Look for the best darn Nissen surgeon you can find.  Make those phone calls...even to GI docs you don't see.  Find out who everyone is using for Nissens.  Call the hospital and ask who does the most Nissens.  Wherever you can get someone to listen. 
 
I don't know if I gave you this link, or if you've already seen it, but it's my post-op early recovery journal.  You might find it interesting, as it would give you a chance to see what early Nissen recovery looks like.  I was prepared for a horrendous recovery and was pleasantly surprised.  I think it's always better to be prepared!
 
Good luck with your search!  Let us know how it goes.  Be sure to ask any questions that might come up in the meantime.
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

Lallabee
Regular Member


Date Joined Dec 2012
Total Posts : 20
   Posted 1/25/2013 11:05 AM (GMT -6)   
I saw the new surgeon last week. He also said that after looking at my reports, and listening to me repeat what the GI docs were telling me, something was not making sense.
He had all reports from the GI doc re-faxxed to him, and WA-LA! Neither him nor the surgeon I'd seen prior had gotten all of the information.

So to make a long story short, the surgeon said I would be an excellent candidate for the surgery and that I should also have an easy recovery.
I'll be speaking with the surgeon today so he can answer anymore questions I may have, and will also be scheduling the surgery.
I'm nervous but after much research...I'm done with PPI's and hopefully will never have to take them again.

This surgeon said that taking PPI's 20 plus years has been linked to stomach lymphoma, not to mention low or no absorbtion of magnesium, calcium, vitamin D, and iron.
I feel like this could be one of the reasons I feel so tired the last few years. I'm on year 13 of PPI's!

What questions should I ask today? My only 2 are, How long before I can lift and how much?...and can he release an adhesion I have from a prior surgery that has been causing me pain. The last surgeon said NO to that as she said adhesions grow right back (?).

Gastricman
Regular Member


Date Joined Jan 2013
Total Posts : 294
   Posted 1/25/2013 3:27 PM (GMT -6)   
Hi Lalabee,
 
Please take a look at my thread:
 
 
Let me know what you think.
 
Regards,
 
Gastricman :-)
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