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Who is the Nissen WRONG for?

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Posted 1/1/2012 10:24 PM (GMT 0)
Hello friends, new and old! wink

MY 5¢ TOUR - 26 year old female, 3lbs over "normal" BMI range (working on it!!), been living with GERD since June. I have made ALL suggested lifestyle changes. Now on Somac (Pantoprazole) 40mg/day. Medication abates the actual heartburn, but I now have different symptoms, like bloating and nausea (in place of when I would have heartburn off the meds). I DO still get breakthrough heartburn even when I don't eat triggers. As for triggers, I still can't even touch them. I am negative for H. Pylori, and my only gastroscopy showed normal anatomy. Even with lifestyle changes and medication, my symptoms have progressively gotten worse and worse - for example, when this first started, all I had was heartburn. Now I have right-sided pain, bloating, the feeling that something is stuck in my chest, nausea, burping, and I can't lay on my back OR side.

I have read a lot about who the Nissen is for, but I haven't seen anything specific as to who it doesn't work for. My GI said (from the anatomy alone) that it didn't look like surgery would help me. Is this necessarily true?? confused

Thanks in advance!
Ashley :-)
Posted 1/1/2012 10:42 PM (GMT 0)
Ashley,

Happy New Year.  I am not sure I understand what your Dr means by "the anatomy alone" = "it didn't look like surgery would help me"  Did your Dr. give you any further information that would explain what he was referring to ? 

Anti-reflux surgery is recommended for patients whose condition includes one or more of the following: oesophagitis (inflamed esophagus); recurrent or persistent symptoms in spite of drug treatment; strictures or evidence of severe asthmatic symptoms caused by GERD.

Many experts now believe that because of advances in techniques, particularly the use of laparoscopy, surgery should be considered as primary treatment in patients who are now candidates for long-term maintenance drug therapy. They argue that medications cannot cure GERD. Moreover, only surgery improves regurgitation, and it is far more effective in improving asthmatic symptoms than drug treatment.

Wish I could help you more.

Kindly,

Kitt

Posted 1/1/2012 10:48 PM (GMT 0)
Hey Kitt,

Happy New Year to you also! I hope you've had a great holiday :)

You are helping me a lot, actually. The doctor said that the LES is functioning properly which is why he didn't consider me a good candidate for surgery (the doc who did the gastroscopy said this, I'd never seen him before and he didn't know much about my other symptoms). I find it very hard to believe because I burp food into my mouth a lot. It is always painless. Mostly it's just when I'm sitting or standing after eating, but it sometimes it happens when I'm at yoga in an inverted position.

Thanks for the prompt answer!
Ash
Posted 1/1/2012 11:05 PM (GMT 0)
Ash-

Have you had a PH study, manometry, or barium swallow done? These are better to tell what is really going on. They can see damage caused by reflux with an EGD, but the ph study can tell how often reflux happens. the manometry will show how well your esophagus functions and the barium swallow can actually show reflux and strictures. If the ph study is negative and the barium swallow shows no reflux then they may not recommend surgery. also if there is very bad motility shown with the manometry they may not recommend surgery, but minor motility issues can be over come by doing a modified wrap.

Is this a GI doc that has told you this or a surgeon? I hear a lot of GI docs would rather treat this with meds unless symptoms are very severe or they can see an open LES during an EGD.

Take care and Happy New Year

Bill
Posted 1/1/2012 11:05 PM (GMT 0)
Have you had a motility study done? This the test with the tube down your throat and you drink water as a computer records your swallows (manometry).
Also have you had a ph test? The BRAVO or 24 hr wire test will tell if acid is coming up.

The nissen is not for anyone with motility problems.
Posted 1/1/2012 11:31 PM (GMT 0)
There is no method to definitively test the function of the LES 100%. I have a feeling that the GI doctor who did your EGD based his assessment of your LES by the way it appeared to "grip" the endoscopic device when he turned the camera around and looked back up the esophagus. Mine looked the same way, and even my manometry said my LES is close to "normal". (I've been since told that manometry is often inconclusive.)

My opinion...you need to find another GI. I better stop here, or I'll get on my soap box about GIs who know very little about reflux, and only want to write prescriptions and kick you out the door...

-Bruce
Posted 1/2/2012 2:22 AM (GMT 0)
AshleyRose

im sorry, truly sorry that you are in pain despite all you have done to set things right

i salute your weight loss and diet program and you have provided many of us here with sterling advice

none of us an ever knows for sure what we would do in the position of another

but my suggestion is...hey you still hurt and the doc claiming the LES is ok.....what?...that aint gonna cut it

look for another GI doc

better yet, get to know surgeon who performs the procedure you want, and have her or him recommend a GI doc to see

(working backwards)

i too am not doing well...seems like end of summer, holidays, less fresh vegetable or maybe its something else like mental health...has set me way back

im sending prayers and best wishes your way
persevere
your friend...mock turtle
Posted 1/2/2012 3:54 AM (GMT 0)
Hi Ashley,

Many GI docs won't recommend surgery for anyone whose LES isn't pretty much wide open.  However I believe that they have good reason. 

Those who don't have large amounts of reflux and are reacting to smaller more "normal" reflux episodes may not improve much after having the Nissen surgery.  That's the problem with LPR.  Those of us with that diagnosis don't need much reflux to react. 

Since the surgeon can't get the reflux to "zero", there is likely to be some reflux even after surgery.  If your reflux wasn't all that extreme, and you're sensitive to small amounts, you'll likely to continue to have symptoms post-Nissen.

The thing is, a Nissen can't solve your bloating and nausea.  Those are probably unrelated to GERD.  Your other symptoms are definitely GERD related, so those would likely improve with surgery.

As everyone has suggested, a second opinion would be in order.

I struggled for many years with first one GI doc, then another, until I was FINALLY referred to a surgeon without enthusiasm.  My GI doc wasn't all that sure that surgery would help my situation.  My DeMeester scores (24hr PH monitor) were always within "normal" range.  Since surgeons go for "normal" reflux, there is real fear that with someone like me, symptoms will not improve--and yet, they did. 

Don't give up!

Denise

Posted 1/2/2012 5:06 PM (GMT 0)
Hi Bill, Joy, Bruce, Mock and Denise,

Joy, I have only had gastroscopy - the only time I have seen a GI was for 5 minutes when I went for the test. The doctor I normally see - a GP - seems completely perplexed. His next course of action was to e-mail a GI and ask what to do next; in the meantime, he scheduled an abdominal ultrasound for January 7th.

Bill, I asked for a Barium Swallow and was told they don't do them here anymore. I do wish I could have one done, as I've read a lot about them, and while they don't show everything, they CAN show some things (like strictures).

Bruce, I haven't ever seen a GI so I can't empathize completely, but I can tell you that I've been pretty PO'd about the fact that my GP gave me 6 months worth of Nexium and told me to "come back if it didn't work". What?!? I think all of us here know I would have had terrible rebound heartburn and of course I would have come back probably in tears. Grr... it really bakes my noodle.

Mock, I'm sorry you're not doing well. You are 100% right, this ain't gonna cut it smilewinkgrin Keep your head up, my friend. It's hard, but sometimes watching a funny movie or reading a funny book is really a lifesaver in the mood-elevation department. Don't forget we're all here for you too!

Denise, I have complete faith in your expertise about this, but are you sure the bloating and nausea doesn't have anything to do with reflux? The nausea is recent and could be a side effect of something, but the bloating has been here as long as I've been medicated - it seems to take the place of my heartburn (which I was having every day after eating irregardless of what I ate).

Thanks all for your suggestions!
Ash
Posted 1/2/2012 6:16 PM (GMT 0)
Hi Ashley, here is one more answer to you...from Finland wink

First: Happy new year Ashley & the other readers too!

You have done so good work with your new lifestyle changes and BMI. Again congratulations!!! (I'm a looser, I'm in the same level as before, gosh)

You said nowadays you are suffering from bloating. I'm not an expert of veggie-diet, but could it be possible that there is some veggies, spices or liquids that is the reason for your new bloating problem?

I think every country has their own rules, who is that one they are going to set to NF op. Your doctor will say that to you, if your symptoms are so serious kind that this just "must to do" that op. Every time in Finland this is surgeon, who make this decision, case by case, who is that one they are going to op.

In your case try to get a new meet with your doc to get a new GI-doc visit to f ex impedance test or the other tests.

If you have no trust to your doc or GI doc, it is possible to change the doc. Just say that, when you next time want a new meet with your doc (or GI doc).

Everything is so much easier if you just have a chance to go to the private doc. If you just have money, go to the private doc, then you know the difference...sad to say that, but this is true!

Hoping all the best for you! When is your next date with your doc?

PS. Now I (almost) know where you live, when you posted the pic of Finland's Independence day with the flag! Sometimes I visit the same Viikki-Prisma, which was one pic in your foto-album smilewinkgrin
Posted 1/3/2012 6:24 PM (GMT 0)
Sari,

It was the Viikkin Prisma!! I live in Hermanni, not too far away. You would make a fantastic detective! :D

It's not that I don't trust my doctor, but I think he's in over his head. He's writing to a GI to ask what to do instead of referring me to see one... do you think this is normal here in Finland? Does more have to happen? I am very happy with the public health system but still unfamiliar with how it works.

I go back to the doctor on 17 January for an ultrasound (ultraäänitutkimukseen), hoping for some answers from that, too.

Onnellista Uutta Vuotta!! So nice to hear from you Sari!
Ashley
Posted 1/3/2012 8:34 PM (GMT 0)
Hi Ashley,

So sorry to hear you are still dealing with issues despite all your hard work re: exercise and diet. I wonder the same thing as you about who will benefit from the Nissen. I understand you want to have a good feeling about something (esp surgery) before choosing that option. I don't have the nausea but I have felt a sensation of "fullness" occasionally since getting on Prevacid 3 months ago. It will happen for a week or so and I usually lose a few pounds b/c I can't eat as much as normal. I am guessing this a side effect of the PPI. My 2nd GI doc (the one who did my scopes) also told me that my esophagus looks fine meaning there was no esophagitis (on the second one cuz the first one did show some). All he wanted to do was send me hope with meds. It makes me mad that they think they can "see" our pain. Dumb dumb dumb. How seriously are you considering the Nissen?? I really agree with other posters about you needing to get another doc's opinion on this matter. Maybe a different PPI would help you. Prevacid has been good to me so far. In fact, last night I ate chicken chili. My husband left out the cayenne pepper but it still had garlic, onion, cumin, pepper, and diced green chiles in it. I was impressed. I also drank 4 oz of grapefruit juice before bed on sunday night (we were doing this stupid gallbladder cleanse which by the way did not do anything spectacular). You may want to think about trying a different one...

Take care and keep us posted,

Liz
Posted 1/3/2012 9:04 PM (GMT 0)
Hey Liz!

I was just thinking about you today! How are you? I've got my fingers crossed that you'll be able to have your pizza night sometime soon!

I am going to start pushing for it pretty hard. I was just telling my husband today: From the beginning of this, I always felt like if I did enough, the GERD would go away. If I lost enough weight, if I exercised enough, if I cut out enough... well, I feel like I've done a lot of "enough" and since I'm not even close to normal, I'm getting a bit fed up. I'm starting to feel more and more down a lot more frequently, which is quite a change, as I've always been a positive person, but I feel like my quality of life is completely in the toilet. Even when my symptoms are non-existent (when I'm following the vegan diet), even a single step off the path puts me back at square one.

I will also try to change my PPI's. Even though I'm not having a great time, I really couldn't be happier for you that your PPI is working for you. I just changed about 2 weeks ago to Pantoprazole, and today was the first indication that maybe it's not working so well. I will ask to try Prevacid, I hope it helps me as much as it helps you!

Were you on another PPI before this (I'm sorry I can't remember!)? How long did it take for the Prevacid to kick in for you?

Take care,
Ash
Posted 1/3/2012 10:33 PM (GMT 0)
You know Liz, I was thinking about it, and I would more describe the bloating feeling I've been having as a feeling of fullness. Thanks for the better wording!
Posted 1/4/2012 8:41 PM (GMT 0)
Hi Ashley,

Been thinking about you a lot as well. I feel like we are kindred GERD spirits :) as our GERD began suddenly and at almost the same time (April 2011 for me). In answer to your question about other PPI's, I did take omeprazole 20mg for a few weeks in the beginning and it did help but if I ate anything that was a trigger (ie tomatoes) I refluxed for several DAYS after eating it. This happened once and only once and I learned my lesson. As a result of that 4 day "acid trip" :) ha ha I have not eaten a single bite of tomato since May so I don't know if I will ever eat pizza again.

Are you seriously considering the Nissen? Does the thought of it potentially limiting your ability to exercise bother you at all? The jury is still out for me. I know it has helped a great deal of people but the negative posts on here lately have really scared me away from thinking of the Nissen. Posts about chronic nausea and trouble swallowing. Yikes. I don't know why some people bounce back super fast (like the lady a few months ago who talked about how she was back in her spinning class at 3 wks post op. Now that is thekind of result I would want. In the back of my mind, I hope I can keep this acid under control for another five years or so until my children are old enough that they won't need to be picked up and carried. My 3 yr old is almost 35 pounds and my little guy is 23 pounds right now so I would not easily be able to follow the lifting precaution of 15 lbs or less for 6 weeks or whatever it is.

I also worry about needing it to be redone several times over the course of my lifetime. I am 30 yrs old now so if it lasts about 10 yrs, maybe even less I would need that thing re-wrapped like 5 or more times and I'm sure the scar tissue would be out of this world. This disease sucks. No one can see our pain or struggle and some think we are whining. I'm sorry you have been down and the winter weather doesn't help to boost spirits.

When are you going back to the GI doc? Soon I hope. Nothing like waiting months for results or answers. I am not a patient person and that is something I work on daily so I always want a solution like yesterday :)

I will keep praying for you. Don't give up trying to find a solution b/c there is a doctor out there who can help you and who will care about what you are enduring.

Hugs,
Liz
Posted 1/4/2012 10:35 PM (GMT 0)
Hey Liz!

We're definitely GERD twins. So strange!

I'm curious... where did you hear that the Nissen only lasts for about 10 years? I haven't been able to find that study anywhere, but I've seen people talk about it here. I have read that after 10 years 90% of patients are still happy with the results... is the fact that they're not going past 10 years throwing you? I think it can last for a lot longer than that... another member was posting just yesterday (I think) that her father had one 40 years ago and is still able to eat whatever, whenever. That would be nice!

I think that the bounceback issues have to do with how tight the wrap is, but I could be completely wrong there.

I have to say that I'm not worried about exercising after the Nissen, but that's because I only do cardio exercises, yoga, pilates, and strength training with only body weight or light weights (I.e., squats, lunges, plié squats). I don't think anything there would be too hard on the wrap. Plus, I'm a big fan of listening to my body and if something seemed too hard, I would ease into it. I definitely understand your concern because you are such a fitness guru, but I really think you'd be back to doing your old routines in no time, especially because you're so fit going into it. I think this is where the tightness of the wrap would matter - anyone, feel free to correct me here.

I have an ultrasound on the 17th and will go back after that. You're right, the waiting is almost the worst part! I've got you in my good thoughts!

Take care! Hugs,
Ashley
Posted 1/5/2012 1:08 AM (GMT 0)
My boss' father had his surgery 20 years before he needed a redo.
Posted 1/5/2012 3:00 AM (GMT 0)
Ashley and Joy,

I read 40 years and 20 years (post Nissen) and I almost jumped for joy. I have read a lot of scary negatives and it is nice to read some awesome positives like that. Of course I wonder how active they were, if they ever vomited or wretched, what type of surgeon did their wraps etc. I wish someone would do a study on all the folks whose wraps have lasted 10-20 + years and list their demographics so that folks like us can emulate them if possible.

Ashley,
What is the ultrasound for? Gallbladder ultrasound? Also, have you had a barium test or a pH study at all? I had a 96 hour BRAVO which is a pH test where a transmitter is clamped onto the inside of the esophagus. You wear a small iPOD sized monitor on your person and it reads the amount of reflux from the transmitter. Mine did show reflux during the last day of the test. I have LPR but also have traditional heartburn symptoms occasionally. I have read depressing things about the Nissen being less effective for sufferers of LPR but it's encouraging that I also have a few regular GERD pains and actual reflux per the BRAVO so hopefully that means that closing the hole would stop the burn whether it's in my throat or upper chest.

Take care,

Liz
Posted 1/6/2012 12:25 PM (GMT 0)
Hyvää Loppiaista!

Yes, that I was thinking, you live in Hermanni...or Vallila. Have you taken a foto of that sweet, huge monkey (made of car tyres), which is near the Viikki-Prisma? They say also in my working place that I am one kind of detective, LOL!

Oh boy, our Health Centre (= terveyskeskus) is...how I say that in polite way...amazing. Everything is possible in there. Don't worry, that's good sign, if your doc writes with GI. It could be also possible that nothing happens. Lucky you, you have a next test and so quick after your ex-test. It seems, that they do want to solve what's wrong with you.

Good luck to your ultra-sound (is it upper abdomen us?)! Hopefully they'll find something and whatever it is...is very easy for you!!!

Tsemppiä wink

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