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Upcoming Nissen Fundoplication - Looking for Guidance & Support

Hey Everyone,

This is my first time posting here but after doing a lot of research on Nissen's, this forum seemed to be the most updated. I am 32 and have been suffering from GERDS since I was 18 when I was diagnosed with it after it put me in the hospital for trouble swallowing, shortness of breath, and chest pain. On the 3rd day the Dr's did an Endoscopy and located several ulcers in my esophagus and said I had GERDS.

My family doctor treated me for about 8 years but every new medicine that he would give me would last around 2 years and stop working. Finally, he referred me to a digestive disease doctor. He continued with medications and performed an Endoscopy on me every two years. Again, around that time the previous medicine would cease working. Eventually, I ended up taking the most recent medication, Dexilant (formerly Kapidex). I started off at 30mg, then 60 mg. Back in December it stopped working and he then put me on a cocktail of Dexilant, Pepcid, and Protonix. That cocktail worked for 3 weeks and quit working in January.

My GI Dr. said I was a great candidate for a Nissen and referred me to a surgeon trained in performing the procedure. I hesitated at first and decided against it, but the symptoms were getting worse. My last Bravo gave an above average reflux reading every 15 to 20 minutes with or without food. He told me that there were no more medications on the market so I went and saw 2 highly recommended surgeons in my area. After choosing the one I felt the most comfortable with, he scheduled me for the motility test (which by the way calling it hell would be an understatement) and then he also did a stomach emptying test on me.

I am scheduled for the surgery in June. I understand that sometimes the Internet can be the worst of enemies but it seems like for every 1 feel good story that I read, I am reading 9 horror stories. Needless to say I am not wanting to have the procedure done to simply stop taking medications, nor am I wanting to have it done because I have had reflux for only 6 months so I think after suffering from it for as long as I have, I would possibly have a more positive outcome then others who rushed into the surgery. But needless to say, after reading forum after forum, this procedure really has me scared. I had a ventral hernia repair done 4 years ago so I am well aware of the uncomfortable recovery that comes after a abdominal laproscopic procedure and I am prepared to handle that. But I just can't get past wondering if the side effects of a Nissen is better than living with GERDS which has just become a common part of my life?

The surgeon was very positive (of course). He did tell me the recovery would be long, that I would be on a liquid diet for 2 to 4 weeks, that I would not be able to burp or vomit, and that after 10 to 15 years the surgery MAY become ineffective so it wasn't like he blindsided me, but I am still very hesitant to have this done.

I am not sure if I am looking for support, reassurance, or just a reason to run but any comments would greatly help me either way.

Thanks everyone!!
39 Responses
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620923 tn?1452915648

  Hi...I have not had this procedure, but we do have a few members that have....and I am sure they will pop on to  offer some tips and share their experience.

U can also find older threads with info by using the search this community feature at the top of the forum.

  And I wanted to wish u all the best with ur surgery...do post updates on ur progress : )
Helpful - 0
329165 tn?1515471990
Hi there,

I am glad that you have found this forum and hope we can offer some advice that would make your decision and ultumately, the operation and recovery easier.

The Internet is a scary place, but with a Forum like this, you can get first hand info on patients experiences and we do a service here because we care :)

I am 36 and had a Nissen Fundoplication done, 8 Feb. 2012.  I have a very complicated and long history, but after extensive tests:  24hr Impedance PH study, 2x Manomatric studies (yip, this was not a nice experience) and a lot of Endoscopies and the opinion of 4 Surgeons - I agreed to the operation and I am very glad that I had it done and have now fully recovered from it.

Because I had severe GERD and did not get the operation sooner, I now have a long segment of Barret's Esophagus (a pre-cancerous condition) and damage to the muscle in my throat.

The operation itself is not to bad.  For about 7 days it was painful and I had some complications with my bladder and bowels, but that is just my body that does not like anaesthetics.  After 2 weeks, I felt much much better and almost no pain.  6 weeks latler I have lost 7kg's and ate normally again.  I started doing my normal activities at 2 weeks post-op.

I am busy with treatment now for the damage to my throat and will be surveillance program for the Barret's.  But I am GERD free and so so glad that I had it done.  I was on 60-80mg of Nexium before the operation and now I don't take any Nexium!

You are still young and it is not an option to live on medication and you should get it done while you don't have permanent damage, i.e. Barrets, stricture, etc.

Let me know if I can be of any further help and I would be here post-op :)  all the best,
Helpful - 0
1 Comments
About to have the surgery.  Thank you for your candidness.  I think you have helped me most.  I knew before reading your comments and others that my best choice is to have this done before it worsens. I can thank God that though I have had some swallowing problems, I am still swallowing pills, etc. well, no stricture or damage to my Esophagus. But have a hiatal hernia, GERD now for over 20 years and experience symptoms on a daily basis. with periodic swallowing problems and shortness of breath. I have consulted all types of doctors up to my allergist, who ruled out asthma.  Thank you for your comments.     Mary
63984 tn?1385437939
I experienced the same problem before I had the Nissen Procedure, the internet horror stories weren't encouraging.  However, after meeting the surgeon and seeing his notebook full of very happy people after having the procedure (over 90% positives) I felt more confident.  I really had no choice, stomach acid was removing the enamel on my teeth, my vocal cords were damaged, and more. In my case, the LES valve that keeps acid out of the esophagus was damaged by a very violent retching session caused by a bowel obstruction.

I'm much older than you (70) so the timeline issue of the effectiveness of the surgery isn't an issue for me.  It is something you should consider.

It became apparent to me that the people who followed the recommended diet following the surgery had the best results, those who rushed back to their normal eating patterns had the poorest result.  I'm about 6'2" and weighed about 195 pounds prior to the surgery.  Two months after  the surgery (two years ago) I weighed 182 pounds, and now weigh about 190.  I followed the diet suggested exactly as prescribed.  I would stock up on items like Instant Breakfast, jello, Ensure.  Cold foods were soothing, I think they cooled off the hot incision points.  You will not be able to eat near as large a meal a year or two after the surgery, and I can tell you for sure, carbonated drinks, beer, high fat foods like pizza  and burgers you won't be able to tolerate, ever.  However, most foods that irritate a GERD sufferer like tomatoes, onions, acidic products will be back on you list of foods you can eat.  I have red wine with dinner again.  Recently I slipped up and threw down a glass of beer without thinking at a party, and I really suffered.  You either can't burb or will burb in tiny amounts after the surgery, but you will fart more.

I'd procede with great confidence as long as you have a surgeon who has a lot of successful experience, you are ready for a two or three week difficult recovery period, and can accept a permanent change in diet.  I've had several very intrusive surgeries, including surgery for a bowel obstruction, have had eight heart stents inserted, a pacemaker, plus finally heart bypass surgery.  Heart bypass surgery trumps everything I've experienced, but the Nissen Fundoplication wasn't a walk in the park, it comes in second in terms of immediate discomfort after surgery.  However, it was the most gratifying surgery I've had, I can eat whatever I want whenever I want now, just in smaller portions.   I'd follow the diet exactly as prescribed, and don't rush eating solid food.

I can give you some other information should you wish by contacting me with a private message.  


  
Helpful - 0
Avatar universal
Thank you for your reply.  I guess what concerned my too was that my GI Dr. told me that he personally only recommends this surgery around 12 times a year but as I was speaking with the surgeon and he said that the GI Doctors in this area do not request the procedure like other Doctor's due elsewhere. He said that many years ago, there was an incident with a very inexperienced surgeon who did not know how to perform the procedure and while attempting it, he perforated the patients esophagus and the patient had to have complete reconstructive surgery and the patient almost did not survive the ordeal. He said from that day forward, Doctor's in this area only use the surgery as a last resort. Which is why I was surprised reading forums about people who have "suffered" from GERDS for 6 months and had the surgery, or people who tried to take 1 medicine and had the surgery. He did tell me that this is a very common procedure and that in some areas, doctors tell patients from the very beginning that they have GERDS and they can either take medication for the rest of their life or have a corrective surgery.

As far as vomiting, that really is not a concern of mine because the last time I did vomit was 9 years ago when I had a bad stomach virus. My surgeon told me that he would prescribe me phenergan to keep on hand and that he would auto refill them at the expiration date so I could always keep a supply in case I did catch a bad virus or something.

My surgeon said the same thing about the Internet. He said that the majority of people who have successful surgeries aren't as prone to post their success story online as often as a person who wasn't prepared for it and had a bad experience. That is why I think I will do better because I feel like I am prepared for it and after 14 years of GERDS and every medication failing I think the relief would outweigh the side effects.

So is the surgery sort of comparable to a bariatric surgery where you don't ever eat as much?  One of my downfalls is that I LOVE to eat, but fortunately I have always had a very high metabolism (which I think is beginning to slow as I get older ha ha ha).  I think the hardest adjustment for me would be going from eating like I do now to having to eat 2 to 3 cups of food per sitting.  Regardless with me though, whether I have a full stomach, an empty stomach, a carbonated drink, or just water, the acid is constantly there.  

I have also read that a lot of people who have had the Nissen never really feel "full" again.  From what I read, the fundo portion of the stomach is what tells your brain that you are full and to quit eating and with food never being able to reach the fundo because of the wrap, your brain does not think that you are full but a lot of people said that they knew they could stop eating because their stomach hurts a little.  Is that something that any of you have experienced?  

Thank you again for all of your help!!
Helpful - 0
63984 tn?1385437939
I absolutely feel full after eating.  This surgery does reduce your stomach's capacity, so in that regard, it is like bariatric surgery.  I'd not worry about that.  In my case, if I ate too much, I really paid with digestive issues, so you quickly learn to limit your food intake.  

I still can't eat more than, say, two cups of food at a sitting, and my cardiologist is delighted with that!  You will be fine as long as you follow dietary directions for the month after surgery.  If you don't follow directions, you will pay an uncomfortable digestive price.  

I haven't taken an antacid since my surgery so the results trumped the post surgery issues.  Keep us informed.

Helpful - 0
434278 tn?1324706225
I had a nissen done Feb 1, 2012.  So just 7 days before your surgery.  I am having some problems and wonder if they are common issues....not to be concerned about.

1. I have trouble taking medicine.  I get nauseous and have to take one pill at a time and wait in between pills.  And not mix food w/ pills.  That turns into dry heaving!

2. I have cramping feelings in my stomach.  This usually accompanies a lot of gas.  But it feels like a vice grip is on my stomach.  

3. I am still having acid reflux, it's just not as severe.  I am still on Nexium, sometimes twice daily.  I was really hoping to get off of that.  But even it doesn't always deal w/ the reflux.

4.  Sometimes it feels like something has a hold of my throat.  The swallow and upper GI was normal.  (post surgery)

I am doing what they want me to do.....take small bites and chew, chew, chew.  

I have Lupus and possible Sjogren's (both autoimmune diseases).  I am wondering if some of that may be affecting the outcome of the surgery.

I am really loosing a lot of weight and don't see any relief in sight.
Thanks for your time you give to this community.
Helpful - 0
434278 tn?1324706225
I too feel VERY full, usually after 2 bites of food.  And feel that way for hours and hours and hours.  Actually sometimes it feels like the food just sits there.  And yes, your stomach will start hurting along w/ the feeling like it's all going to come up, but it doesn't.  Not a pretty sight in a public place.

A part of me is glad I had the surgery.  I was having coughing fits all day long and even in the night.  Regardless to what I ate or didn't eat or what medicines I took.  Now, I cough occasionally or when some of the lupus symtpoms flare up.  
Helpful - 0
Avatar universal
Hello everyone,

Well, I had my Nissen on May 14th so I am almost 2 weeks out.  The surgery went really well but I did develop a high fever of 104.7 while I was in the hospital recovering.  Other than that, everything has gone fine, just trying to adjust to this new diet.  Question for anyone else who has had the Nissen, I have completely lost my gag reflex.  Prior to having the Nissen, I couldn't even brush the back of my tongue without gagging, now, I can literally stick my finger down the back of my throat without the slightest gag.  I had my first follow up visit today and I told my surgeon that, but he didn't seem concerned?  He said that he wished he didn't have a gag reflex.  I have been doing research and I haven't seen anywhere where a loss of gag reflex is a possible side effect of a Nissen.  Initially I though, well, if you can't vomit than you probably can't gag either, but I am not seeing that correlation anywhere.

Any input?
Helpful - 0
329165 tn?1515471990
Hi there Karajo  

Sorry for only replying on your post now.  It is also nice for me to "meet" someone that are still in the same recovery stage that I am.

I never loved eating as it always made me feel sick and I have a problem with my Cricopharengeal muscle and food get stuck in my throat... so I am more of a chocolate person :)

but all jokes aside:  I have never had issues with bowels/IBS, but since my surgery I have developed typical IBS symptoms:  constipation, tummy cramps and aches.  But I am okay with that and now just take "Norvacol" once per week (normally, preventative on Mondays) and I must say that it has improved.

I only received the "Crico muscle" diagnoses in April and still battling with that, even though I now take 15mg Diazapam and 50mg Amilothrypteline nocturnally, I battle with hoarse voice and throat troubles...

I have a very complicated Medical History... but I feel better than I have in the past 10 years!

I am still losing wait as I can not eat a lot and I am borderline underweight at the moment (1,67m and weigh 55kg).  I just try to eat healthy and have lost my cravings for chocolates!  but I have not had any Nexium since my surgery.

I consulted an Otolaryngologist who diagnosed the throat issue as being "Cricopharengeal spasms and muscle thickening".  I have been battling with ENT symptoms for more than 3 years and that is why I have agreed to the Nissen Fundo.  Going for Botillium injections (yip, Botox) but will be done under general anaestesia and after 3 treatments might have to go for Mayotomy - and this is all related to years of GERD that were not diagnosed and treated.  As said before, I am also just in my 30's but now sit with long segment Barret's and lifelong surveillance for cancer signs.

With ENT symptoms, post Nissen Fundo, I would advice you to also go and see an ENT or even better a "Otolaryngologist" who specializes in GERD damage.

All the best, and let me know how you are doing and if you have any more questions or just wanna talk :)
Helpful - 0
329165 tn?1515471990
Hi there,

I am now 3 months + post-op after Nissen Fundo.  I have noticed a difference in the way that I used to "burp" - now it just feel like bubbles coming up and I don't have control of it.  I have to stick my finger almost down my throat as my Epiglottis becomes very swollen during the day (long story, but I have a thickened muscle due to GERD damage) and I don't gagg or feel like vomiting or anything.  I am so used to doing it now as I have had these ENT symptoms for more than 3 years now.

I don't think you should be conserned about the loss of the "gagg" reflex.  You are very early in the recovery period and a lot of the symptoms that you have now will also get better and disappear with time.  I can remember that I had those terrible shoulder-pains for up to 2 months post-op, every time that I either had something gassy to drink or even just ate to quicly.  That has now completely disappeared and I don't have any dietary restrictions and can even drink Coffee for the first time in years :)

All in time, but it will improve.  All the best and keep us updated on your recovery :)
Helpful - 0
434278 tn?1324706225
How did they dx the Cricopharengeal muscle problem?  

I have also lost a lot of weight, but that seems to have slowed down somewhat.  I've lost a little over 20 lbs.  I almost weigh what you weigh now.  The symptoms seem a little better, but I still can't eat very much.  And I still get nauseous at times.  I looked back on my post a month ago and can see some improvements.  They did a swallow test, but thought everything looked OK.  

Thank you for your reply.
Helpful - 0
329165 tn?1515471990
Hi there,

I have had these ENT symptoms now for 3+years and eventually I ended up seeing an Otolaryncologist who did a Fleuro-scope test (pipe through the nose to the UES) and he could see that the muscle is thickened and damaged from GERD.  I had my test done in Adelaide.

I have read that the Crico muscle is also called the UES?  you can read into that.  Very interesting and complicated.  Treatment is the muscle relaxants and then Botillium injections via Endoscopic instruments.

Hope the info helped you.
Helpful - 0
Avatar universal
Thank you for your post. I am looking into this process as well. I have had gerd since I was 16 I am now 60. I am so very tired of coughing, vomiting and acid taste. There are always bad reviews but I'm trying to be positive. Keep on smiling.
sherry
Helpful - 0
434278 tn?1324706225
I have had the scope down the nose - not too bad of an experience.  Before the surgery, my vocal chords were very red and inflammed, but no muscle thickening damage.  After the Nissen, the vocal chords looks better.  

I still have a dry cough, but it is much better.  Some days it is really bad, but at least it's not bad everyday like it was.  
Helpful - 0
434278 tn?1324706225
Hi and welcome to MedHelp.

I am now 4 months post-op.  I am finally feeling like I'm going to be OK.  I still can't eat very much, but I'm OK w/ that.  Just know that you will initially you will need to be on a liquid diet for a while.  (jello, broth, ??)  Then work up to soft food.  Bananas worked real good for me.  The dr. said to stay away from white starch, but I did well w/ mashed potatoes.  Just take small bites and chew really good and expect NOT to be able to eat very much.  When you drink, don't drink fast, just sip.  (my dr. didn't tell me any of this - other than the starch thing)  You will need to be careful about eating for a couple of months.  I recommend that you get a list of diet recommendations from your surgeon before the surgery, so you can be prepared w/ the food items needed.  The surgery itself was not too bad to get over - you know the cutting part.  But my stomach was really angry with me.  Another thing is pills.  Take ONE pill at a time and wait an hour before you take another.  I found that food and pills were too much.  (when something is too much you dry heave for hours - not good!!) FYI
Helpful - 0
329165 tn?1515471990
Hi there,

Did you get a date for your Surgery yet?
Helpful - 0
Avatar universal
Hi ya, I have come actions your post and was wondering if you have had the surgery yet? I'm a 39 ye woman and had the nissen 3 weeks ago, I have suffered with reflux fir years and I must admit since the surgery I feel much better and best thing is I can sleep at night which I wasn't able to do without choking! I'm still early days with my recovery and not eating much but hoping that changes soon as I miss my food, I have lost loads of weight but so far I'm glad I had the surgery!
If there is anyone also out who can tell me when can I start introducing carbonated drinks back into my diet as my doctors have given me no advise!

Thanks Keely
Helpful - 0
434278 tn?1324706225
Hi Keely,
Glad surgery went well for you.  For a long time I wasn't sure I had done the right thing.  Its been a year since my nissen was done.  I think I've been able to drink cokes for about 6 months.  But just start out small.  I couldn't drink a big jug.  And sip really slow.  
Helpful - 0
Avatar universal
I am waiting to be able to have a fundo done.  My surgeon tried to tell me I needed it done years ago---sure wish I had done it back when I was 34 and not having other health issues.  I have trouble swallowing food and have had to have my esophagus dilated 4 times, 3 times i have had a shotzky's ring, and now I have developed eosinophilic esophagitis, which my GI feels is secondary to the severe reflux I have had for 22 years.

I am now on high dose prevacid, 30 mgs 2x daily--i have fought taking PPIs for years, and I am also on a liquid steroid that I have to swallow twice a day to hopefully get my esophagus in good enough shape so I can get the surgery done.

I have changes in the surface of my esophagus from the EE.  I have rings--called a feline esophagus, and I also have furrows that run up and down the esophagus---I'm not sure where each of these changes is located, but I have seen pictures of them.

My daughter had a fundo when she was almost 10 months old. She was born with a hiatal hernia (we did not know this until surgery) and her esophagus was getting ulcerated when she was only 8 months old.
She never had any complications and I would do the surgery again in a heartbeat.

My daughter is able to burp with no problem, but she cannot throw up.  When she gets nauseated, I give her saltines and a pop to sip, just like I give the other kids.  She also wants a bowl, like they keep nearby for throwing up---but all she does is spit in it.

My father, who will be 78 in 2 days, just had the surgery last month and is doing great.
Helpful - 0
Avatar universal
have my surgery booked for july 18th, 2013....very scared....is it true I can't have caffeine or carb drinks afterward.....is this a permanent change ?
Helpful - 0
63984 tn?1385437939
I had the procedure four or five years ago.  It's a big surgery, I'd approach it with the attitude that you will have to make changes in your diet for quite a few months, and some will have to be permanent.  
Regarding Caffeine, I drink coffee every morning now.  I didn't for a couple of months after the procedure, however.  
Regarding carb drinks, I can't and won't drink them.  Beer, soft drinks, whatever is carbonated, I won't touch.  I worry that I'll build up enough gas to tear loose the Nissen wrap.  For me, it was an easy trade-off.  My GERD was bad enough that I developed Barrett's Esophagus and acid was destroying my vocal chords, and my tooth enamel was eroded.  
I'd suggest that you obey the follow up diet very closely, stay away from solid foods for at least two months after the surgery.  Expect to lose about 15 or 20 pounds the hard way.  
I haven't had to take any antacid product since the surgery, but I followed directions, and it has been a lifesaver for me.  Keep us informed.
Helpful - 0
434278 tn?1324706225
It's been a year and 4 months since I had the surgery.  I literally thought I was going to starve to death.  At first I could only eat a tablespoon of food (once I could eat food - which took maybe a month).  I found I really don't like cokes anymore.  There is definitely a recovery period.  I wished I would've been more prepared.  I would've bought some things like jello....and more jello... and maybe some more jello. They told me not to eat potatoes, but I didn't have trouble with them.  Actually they were a welcomed addition to my jello.  Eat very slowly and chew 100 times before you swallow.  Pills were my BIGGEST struggle.  I take meds I absolutely need and vitamins I would like to take.  But I would take 1 pill and wait 30-1 hour, and then take another pill.  It took me all day to take just the med I HAD to take.  This went on for over 6 months.  

I know all of this sounds scarry, but I finally was able to get off of Nexium (which I think has caused me to have osteoporosis at an early age)  I still had to take Nexium for a while after the surgery.  I still have some occasional acid reflux, but not to the point it affects me like it was.  The acid reflux was causing my vocal chord to be very red and irritated, thus causing me to have continual choughing fits all day and all night.  So in the end, I'm thankful I had the surgery.  But there for a while I actually thought about having it undone.  If you over-eat or take too many pills, you will dry heave all night.  Not pleasant at all!  Or eat and take (a) pill...more dry heaving.  Couldn't do both!!!  

The actual surgery was a breeze.  I had more surgery pain from the gallbladder surgery than with this.  Praying all go well for you.
Helpful - 0
Avatar universal
Can I ask, how long after the surgery did you stop the Nexium? Im two months out and have been told to stop, feeling a little reflux here and there, wondering if it is a mistake to stop so early. Also, did your esophagus vocal chord conditions heal, and if so how long did it take?
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434278 tn?1324706225
It seems like I took Nexium about 6 - 8 months after the surgery.  This Feb. will mark 2 yrs.  

I am starting to get the cough and burning in my throat again.  But I'm trying not to take Nexium because I have osteoporosis very badly and I haven't gone through menopause yet.  
Helpful - 0
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