Nissen/ Who to Believe?

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.

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:

https://www.healingwell.com/community/default.aspx?f=45&m=2183443

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.

 

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!

https://www.healingwell.com/community/default.aspx?f=45&m=2183443

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

Hi Lalabee,

Please take a look at my thread:

https://www.healingwell.com/community/default.aspx?f=45&m=2618961

Let me know what you think.

Regards,

Gastricman