32 Years Old GERD, LPR, & Sinus, considering Nissen

Hi, I've been lurking around for awhile. This forum is great and really awesome the information and support that is available. I'm grateful and hope to further participate.

I'm 32 years old and been on PPI's for over 12 years. Currently on Dexilant 60mg 1x day because the Nexium stopped working. I'm 6' 175lbs with good blood work and have been scoped every 3-5 years.

Over the past 2 yrs, I have noticed LPR symptoms. Hoarseness, throat clearing, and the worst: LPR GERD while exercising. Makes high intensity exercise miserable. Seems like non-acidic reflux. It is like the Dexilant is reducing the acid but it's still all coming up and inflaming my voice box and sinuses.

I have chronic non-allerginic sinus and have dealt with it my whole life. In fact, my ENT was the one who originally recommend PPIs because my throat was so red. This was after Sinus surgery. With more LPR symptoms over the past 2 years, my sinuses have also gotten worse.

A year ago, my GI Doc suggested looking into surgery. So, I had another EDG and scheduled PH and Manometry Tests. My EGD was negative for Barretts but showed some inflammation at the LES Junction. I researched the Nissen and was sort of scared of having a major surgery being so young so I decided to not have the PH and Motility Test. I also have a 4 year old and 2 year old so the thought of having a surgery with tough recovery and 2 kids also turned me off.

But a year later with symptoms slowly getting worse, I am considering surgery. I am scheduled to have a PH Test and Manometry test next week and then see if it's a viable option.

FWIW, I've tried a variety of diets without much luck (gluten free, dairy free, does seem to help a bit). I stopped drinking coffee (decaf and caff) but still drink alcohol a couple times a week. The coffee actually makes my LPR/GERD way worse that alcohol.

I've read many clinical studies and it looks like the Nissen has a high success rate not only for GERD/LPR but also shows some improvement in extraesophogeal symptoms, like sinus.

My sinus symptoms are swelling only, non-allerginic rhinitis. I've had allergy tests and food tests and nothing shows up (except Coffee). I'm convinced that the majority of my sinus issues are GERD/LPR related.

Last detail, 2 years ago I had a bone scan and it showed minor osteopenia in my back. So I would love to get off PPIs for that reason, among others.

So I guess this leads me to a few questions.

- Assuming my PH Tests and Manometry show I'm a good candidate, am I crazy to have a NF so young? I would absolutely love to not have to take such a powerful and expensive medication and better my quality of life.

- It seems like after 10 years the wraps start to loosen and symptoms show up again. Is the process to to just have another surgery? That would be a lot of surgeries for me if so.

- And anyone out there who has had Sinus/breathing symptoms improve after having the Nissen? I've seen this happen in some studies and wondering about real world experiences.

Many thanks in advance!

Post Edited (PaleoPop) : 12/30/2013 10:12:58 AM (GMT-7)

Thank you Brandy for your reply. Did you have any Sinus issues related to GERD that are alleviated post op?

I have a PH Impedance Schedule and Manometry scheduled. I will also ask about Barium and Gastric Emptying test.

Another thing I should mention. I have back and hip muscle pain and swear the Dexilant makes it worse, if not part of the cause. Anyone else here have muscle or joint pain because of PPIs?

I hope it fixes my sinus problems. My ENT felt my chronic sinus infections were caused by acid reflux. It's too early to tell, I had the Nissen on 9/10. Time will tell. I'm still using flonase and zyrtec twice a day, for allergies. I had some sinus swelling last week and used sudafed. Since I was intubated for the Nissen, apparently sinus issues are a post-op temporary problem. I stayed on top of it to prevent infection.

My manometry test showed no problems, so I believe that is why my recovery from the surgery has been so simple. Like Stephanie, I can eat most things at 2 1/2 weeks post op.

FWIW, here is a study I found on long term outcomes. This is pretty encouraging.

-----

http://www.pubchase.com/article/article-23751993

Schietroma M, De Vita F, Carlei F, Leardi S, Pessia B, Sista F, Amicucci G. (2013) Laparoscopic floppy Nissen fundoplication: 11-year follow-up. Surgical Laparoscopy, Endoscopy & Percutaneous Techniques 23 :281-5.

Abstract:

BACKGROUND: There are few published reports on the outcomes of ≥ 10 years after a laparoscopic floppy Nissen fundoplication (LFNF). MATERIALS AND METHODS: From April 1994 to January 2012, 567 patients underwent LFNF and the outcomes of 211 cases were determined (from April 1994 to October 2000). RESULTS: Outcomes at ≥ 11 years after surgery was available for 178 patients (84.3%) of which 167 (93.8%) had no heartburn or mild heartburn, 8 (4.5%) had moderate heartburn, and 3 had (1.7%) severe heartburn. Dysphagia was nonexistent or mild in 153 (85.9%), whereas the remaining 14.1% presented moderate to severe symptoms. Reports of 69.1% patients showed none or mild symptoms of abdominal bloating, that of 23% patients showed moderate discomfort, and reports of 7.8% showed severe bloating. Satisfaction score was 8.6 (of 10). A further surgical procedure was required for 7 patients (3.9%): 4 for recurrent reflux and 3 for dysphagia (2 for a tight wrap and 1 for a tight esophageal hiatus). Postoperative dysphagia sufficient for an endoscopic dilatation was observed in 4 patients (2.3%), where 3 were successfully managed with a single dilatation procedure and the last patient underwent several dilatations before adequate swallowing. CONCLUSION: LFNF is an effective long-term treatment for gastroesophageal reflux disease, yielding similar results to open fundoplication.

Yes, I have eliminated Diary and Gluten for long periods but not corn for long periods.

I am intrigued by Fast Tract Digestion diet but also skeptical of any diet that claims to be a panacea for a world wide problem affecting millions of people.

Yesterday I was scheduled to have the Manometry and Ph Impedance test.

They had to reschedule my Ph Impedance because my doc wants me off Dexilant for that one.

HOWEVER, I did take the manometry test which was possibly one of the most uncomfortable things I've experienced. Someone here mentioned it's like being waterboarded. I might agree with that. Anyways, got through it and rescheduling the Ph test to go without Dexilant for 5 days. Will post results when I get them.

Please tell me the impedance test isn't as uncomfortable?

Hi There Paleopop,

I have read your post and I have almost all of the issues you do, and some of the others. I just turned 38 and I constantly contemplate this same dilemma. What to do. In my case, the PPI's combined with Zantec 150's help keep the acid, GERD, LPR and redness in my throat at bay most of the time, but there are times when I get the vicious burning and acid coming up for a couple days and nothing can stop the discomfort.

when things are manageable I don't think about my GERD too much, but when I get the light chest discomfort feeling, the tightness in my lungs from the acid vapor, or the soar throat, I find myself becoming miserable and running to this sight to start contemplating Nissen. It's a awful cycle that most of us deal with I'm sure.

I have my ENT check my throat swelling every six months to have added peace of mind.

My biggest concern if getting the Nissen is the fact that once you have it you can NEVER vomit again. Now I'm not looking to vomit for the sake of it, but I have had the flu a couple times and I cannot imagine what I would do it I got after getting the wrap... I've read here that people just take a anti-nausea pill, but I know from my worst flu experiences, that no pill would have helped me when I was in the thick of the sickness.... This is truly my major concern.

I have had Thyroid cancer a few years back, and although I'm fully treated now with very little to worry about on that front, I also cannot ignore the fact that if I get another cancer down the road and have to have Chemo, I would worry about the potential of vomiting then... I know this is all part of thinking too much about the 'what if's' but I'm a type A personality and this thought haunts me.

All this being said, and since I'm here suffering miserably typing because of my reflux, I'm thinking that Nissen is solution for now... and I should truly consider it to remedy this reduced satisfaction of life (when the flare-ups happen). My Naturopathic even told me that this is ultimately a body dissorder that cannot be fixed by anything other than surgery and is encouraging me to do it. She even said to not worry about what will happen down the road.. By then there could be something else that will help fix it.

I'm also scheduled for all the tests the first week in November. I'm actually a little afraid of going off the PPI's because of the pain. But I guess we'll have to see what comes out of it. I have had a mobility test before and i had a slight weakness in the muscles just above the LES. Not sure if this eliminated me as a candidate for Nissen, but I hope not. I was considered low normal.

Please be sure to continue posting your journey and I will do the same.

All the best.

Some people totally can vomit after nissen. It shouldn't be what prevents anyone from getting a surgery they need. Zofran is great for nausea, and you can always go to the Dr. or ER for stronger drugs or help if you get food poisoning.

The only thing it really meant for me is no more binge drinking champagne to the point of a hangover and if I ever get pregnant, morning sickness might take its toll on me, but my surgeon and my GI and my Gyno who I consulted about the possibility of pregnancy after nissen all seemed confident that my surgery wouldn't affect me negatively like that.

Sure when you vomit, you might risk damaging your wrap especially in the early healing stages, but many people have had sicknesses and came out of it just fine.

Glad I could help you!
Basically I said to myself pre surgery, who really wants to puke?!?! and figured I would deal with it if it happened. I even get migraines where I vomit and zofran has been amazing for that. I have boxes of those awful little pills in the car, in my desk, in my night stand.

I took them a lot right after surgery, they helped a great deal, but they really constipate. now, i am about two months out from surgery and even had the flu and didn't need to take it.

I actually cant feel my wrap at all. I know everyones surgery is different, but even now at 2 months out I cant feel it and I have eaten brisket and bagels and all kinds of stuff.
my stomach doesnt like certain foods, and is extra sensitive. I get gassy easily and full very quickly and certain medications really irritate my stomach, but its getting better. if anything it just burns.

I had some spasms, but even those are reducing in frequency.

I actually felt so good so fast after surgery I thought it was a failure lol. I am still trying to reassure myself it worked, i dont reflux..I know that for a fact. I can kind of burp, especially when drinking liquids. now that my swelling has gone down and I have given up milk products I dont bloat like I used too. its pretty cool actually. Id do it again totally. I mean the first two weeks were a pain in the ass, but it worked!

Thank you!
I had a loose floppy nissen. My surgeon told me that only centimeters of my fundus was wrapped around my esophagus loosely after my hernia was repaired so he intentionally made my wrap very very loose while being confident it would stop my reflux.

The one thing I was not prepared for, and it has surprised me my whole recovery is that I have no idea what it is supposed to feel like. I was refluxing so much pre surgery, and now I am not, its a little weird to not know what normal is supposed to feel like and it can be unnerving. That anxiety is worse than any pain I experienced after the surgery.

Hi Stockster,

I want to comment on the "never vomit again" comment.  My surgeon did warn me that I wouldn't be able to vomit or burp after surgery, and yet, I can do both.  My stomach began burping little burps the day I was still in the hospital post-op.  The burps aren't exactly the same, in that I don't control them.  My stomach decides when it's going to burp.  I'll tell you, though, that it can let out some pretty big ones!  Because of that, I didn't have much trouble at all with bloating even during the recovery period. 

I can have a little bloating occasionally even now, if the gas gets ahead of the wrap's ability to let it escape.  I think once the gas gets going it pushes the wrap against the esophagus opening and at that point you'll be waiting for it to escape out the back door.  The most recent painful bloating issue I've had was when I had two glasses of champagne (not recommended!!!! too bubbly!!!) to celebrate my son's engagement.  OUCH!  That was a year ago, though, so you can see it's rare.

Since my surgery, I've had three stomach bugs and found out I could vomit.  It feel a little different, because the urge to vomit is there, and you can feel you're going to vomit, but it takes longer for it to get started.

That said, though I can vomit, I try hard not to.  Once I've had that first welcome relief, I use Compazine suppositories to keep myself from vomiting further.  The thing is, I find that each time I've vomited, it was a total surprise.  I didn't really have nausea as a warning, or I'd have taken something for it.

It's important, once wrapped, to always carry anti-nausea meds with you.  Zofran is good for mild nausea (in my case at least), but one I'm in a full-blown stomach bug, I can't keep anything down, so it's not going to help.  The Compazine suppositories work great for that.  Repeated vomiting can be very hard on the wrap.  In the early recovery period, it can damage it greatly, so you definitely want to avoid vomiting at that point.

Even retching is hard on the wrap.  There are people (Bill, another moderator here is one of them) who can't vomit. I think that it's individual.  He carries anti-nausea meds everywhere as well.  That's one thing we recommend...ask your docs (PCP, GI, surgeon) to give you scripts for them.  Some surgeons, I don't know why for the life of me, refuse to give anti-nausea scripts, so ask until you get them.  You don't want to damage your wrap.

Believe me, not being able to vomit is a very small price to pay for the relief the Nissen surgery provides.  I'd trade that any day! 

Glad you've contacted my dear friend in Toronto!  She'll be a great resource for you!

Best wishes,

Denise

 

Hi Stockster,

I had a full wrap.  The surgeon used a "56 French" bougie as a spacer so he could judge the tightness of the wrap.  I know that they are sometimes used and sometimes surgeon's don't like to.  Often they develop a "feel" for the tightness of the wrap and find them unnecessary.

Take care,

Denise