Hiatal Hernia + LPR reflux, going to demand Nissen surgery - anyone have experience?

[wheresmybacon]

http://www.webmd.com/heartburn-gerd/laryngopharyngeal-reflux-silent-reflux

To make a very very long (13 years) story short(er), I'm tired of being on (PPI) meds that don't or barely work, and lifestyle changes have done nothing for me. I have a doc's appointment tomorrow and I'm going to ask for the Nissen fundoplication surgery. And depending on the size of my hiatal hernia, I may need that repaired too.

Has anyone had these surgeries or have you known someone who has?

I don't suffer from normal GERD. I suffer from a derivative known as LPR reflux, and it's living hell. I was running around 30 miles a week last fall, but had a recurrence of symptoms in January and had to stop working out almost entirely. Due to a (now) vegetarian and sometimes raw or vegan diet, I haven't gained any weight, but at the same time not being able to do what I love - run and lift weights - completely sucks.

My main symptoms are a burning lump in my throat as well as chronic post-nasal drip, chronic cough/throat clearing, bloating (hernia), as well as asthma-like symptoms. I’ve been in near-constant pain and discomfort for the last 4 months. To quote someone from another forum: “this disease makes me want to kill myself”. I can relate.

Kind of rambling here. Thanks for listening.

==========

Update 8/10/2012: I had a motility study and another EGD but this time with a Bravo pH probe. The results of the motility study were normal, and the results of the Bravo test proved I was having significant reflux, even though I didn't have a tremendous amount of erosion. He said that's typical of LPR reflux. The EGD also confirmed I have a hiatal hernia which needs fixed.

Because my symptoms are what they are even after lifestyle change and medication, the Nissen surgery and hiatal hernia repair were offered to me as an option. My surgeon went over the risks, benefits, etc etc, and I agreed that surgery was what I wanted. So I'm going in Wednesday. He's a very experienced surgeon, and it's all done laparoscopically, so recovery won't be that terrible.

Update to come post-surgery.

Oh, and this is a completely different doctor. I fired the other guy who said open surgery was the only option.

Update 10/16/2012
I've had the surgery and for all intents and purposes I'm cured. I've written up a detailed account of my entire ordeal here: http://www.dailystrength.org/c/Hiatal_Hernia/forum/15029870-suffered-13-years-now

 

[drteming]

Have you had a 24 hr pH monitoring study and an esophageal motility study done?

A Nissan fundoplication is a "functional" operation. It's not 100% effective. Up to 40% of patient still require long term PPI's postop. Also, some people cannot belch afterwards and it could lead to increased bloating. Think about it long and hard. Although the complication rates are low, a perforated esophagus is a disaster.

 

[wheresmybacon]

Have you had a 24 hr pH monitoring study and an esophageal motility study done?

A Nissan fundoplication is a "functional" operation. It's not 100% effective. Up to 40% of patient still require long term PPI's postop. Also, some people cannot belch afterwards and it could lead to increased bloating. Think about it long and hard. Although the complication rates are low, a perforated esophagus is a disaster.

I'm at the point where almost any amount of risk is worth it. I wasn't exaggerating when I said I can relate to the person who said in another forum that this disease made them wish for death. The constant discomfort is torture. It literally feels like acid is getting IN my airway at times. It's the scariest fucking thing in the world to feel like you're internally suffocating. PPIs have been only minimally effective. The only one I can think of I haven't tried is Aciphex. So far Dexilant has proven to be the best for me. Nexium was about as good, but my insurance won't pay for it.

I had the pH test 8 years ago and it said I didn't have acid reflux, but the doc at the time - an internist, not a gastro - wasn't specifically looking for LPR reflux, just normal GERD; classic heartburn symptoms, which I rarely have. At about 6:50 in the video here, this doctor explains why even pH monitoring can miss LPR reflux if it's not specifically being looked for:

http://www.youtube.com/watch?v=O-abXFzZ2_8

I just had an upper endoscopy and an upper GI within the last 2 months. The endoscopy revealed a "moderate hiatus hernia" and gastritis, but my doc said I didn't have GERD. The gastroenterologist was recommended to me by a friend, but I'm done with him. He doesn't seem the least bit interested in helping me figure out what's wrong. He's happy to see me since I have insurance that pays the $600 he charges for an office visit, but since he didn't see erosion in my esophagus he thinks I'm fine and wouldn't recommend surgery for either my hiatus hernia or reflux. He just gives me the same handounts on lifestyle changes which I'm already following 100%. What scared me is he didn't even seem to know about laparoscopic surgery for the hernia. He said the only option was open surgery. WTF?

He also said that my main symptoms - constant throat clearing, a globulous sensation in my throat, difficulty breathing, hoarseness, post-nasal drip, an acidic taste in my mouth - couldn't possibly be related to anything he could help me with. He told me to see a lung doctor. Outrageous. I actually was tested for asthma the same year I had the pH test. Negative.

I've done a ton of research on LPR reflux. It's pervasive but often mis or un-diagnosed. Its usually first diagnosed by an ENT doc. It just so happens that I have a follow up appointment with my ENT today for something unrelated. I'm going to ask him about LPR reflux and what the next steps are. I trust this guy. I couldn't breath out of the lest side of my nose at all until he surgically fixed me.

Thanks for the reply. I don't want surgery if it's not necessary, but so far meds and lifestyle changes have done very little for me in the way of relief.

EDIT: I forgot to mention I haven't had the esophageal motility study done. Is that the same as an upper GI?

 

[drteming]

...I had the pH test 8 years ago and it said I didn't have acid reflux, but the doc at the time - an internist, not a gastro - wasn't specifically looking for LPR reflux, just normal GERD; classic heartburn symptoms, which I rarely have. At about 6:50 in the video here, this doctor explains why even pH monitoring can miss LPR reflux if it's not specifically being looked for...

8 years ago...they may have used a probe with a single sensor and missed the upper esophageal environment. Having said that, acid has to come from the stomach, and the lower sensor should have picked up any changes in pH. Having said THAT, it doesn't take as much acid to do damage to the upper oropharynx as it does for the esophagus.

EDIT: I forgot to mention I haven't had the esophageal motility study done. Is that the same as an upper GI?

An upper GI is a x-ray study with the patient drinking a contrast material. It shows the anatomy ,and if done with floroscopy, the dynamic function of the esophagus, but only to the extent of the interpretation of the radiologist.

A motility study examines the peristaltic waves as it propagates down the esophagus to ensure normal function. It gives a hard number. It's done with a probe with pressure transducers. If the esophagus does not function well, a partial wrap is done (Dor or Toupet). If you get a 360 degree wrap with a poorly functioning esophagus, well, if you think life sucks now...

Of interest, Dr. Rudolph Nissen operated on Albert Einstein in 1948 for an abdominal aortic aneurysm. At the time, they were wrapping aneurysms with reactive cellophane to promote scarring in the surrounding tissue to prevent rupture. Didn't work.

 

[wheresmybacon]

My ENT doc is sending me to a different gastro and also a pulmonologist. He thinks I need to be checked for adult-onset asthma.

I wonder if all my symptoms, especially the shortness of breath and pain, are a function of my hiatal hernia much more than reflux. I saw one post about a guy who went in for a Nissen procedure, and the surgeon ended up having to do a full open surgery to repair the biggest hiatal hernia he'd ever seen. Evidently prior to the actual procedure he'd been diagnosed like me, after an upper endoscopy, as having a "moderate hiatal hernia".

Thanks for your informed replies, Dr.!

 

[wheresmybacon]

Update: I had a motility study and another EGD but this time with a Bravo pH probe. The results of the motility study were normal, and the results of the Bravo test proved I was having significant reflux, even though I didn't have a tremendous amount of erosion. He said that's typical of LPR reflux. The EGD also confirmed I have a hiatal hernia which needs fixed.

Because my symptoms are what they are even after lifestyle change and medication, the Nissen surgery and hiatal hernia repair were offered to me as an option. My surgeon went over the risks, benefits, etc etc, and I agreed that surgery was what I wanted. So I'm going in Wednesday. He's a very experienced surgeon, and it's all done laparoscopically, so recovery won't be that terrible.

Update to come post-surgery.

 

[blackdogdeek]

good luck!

 

[SociallyChallenged]

Yeah, hiatal hernias are terrible to live with. They create a lot of discomfort. It's great that you don't have significant erosion though - that would be something that would affect you for a very long time. With the surgery, the problem should be relatively well managed as long as it doesn't herniate through once again. Just be sure to abide by the post-surgical precautions at all times to avoid that and allow thorough healing. Best of luck to you for your surgery. Hope all goes well.

 

[Smileylady81]

Did you have the surgery? Did it work? What you have described is so similar to what i've been going through.


I woke up in the middle of the night , 5 months ago, feeling like I was choking and that i couldnt get any air down into my lungs - i thought i was dying...i looked it up and it was a symptom of GERD/reflux type issues...it was terrifying to be honest...this went on for months. I managed to stop the night chokes by basically sleeping upright on 4-6 pillow (hello backache) . I still developed mild pnemonia from it all ( well i think thats what caused it - the doctors didnt agree) from breathing in the acid..The symptoms increased to tickly throat, constant cough,blocked nose ( which amped up the choking fear), blacking out through coughing,rasphy breathing when the acid kicks in, voice getting husky at points when the acid kicks in, not being able to lie down (on front or back) without coughing, not being able to laugh without coughing,not being able to lean forward or excercise - without coughing, a burning sensation in my throat, pains in my tummy, regurgitating every meal and hour after id eaten..and burping...a lot...

Anyways after 2 x A&E visits at the hospital, 4 doctors, so many drugs and prescriptions that i feel like i rattle when i walk and practically every doctor telling me it was related to my asthma ( it wasnt - and ive been telling them that since the start)...i finally got a doctor that would listen to me and put me on domperidone and lanzoprazole.

The domperidone stopped me bringing up food and the sound of my gullet opening when i coughed and the lanzoprazole has helped with the acidic tastle and reactions to certain foods... ive since beeen for an upper endoscopy and they found a sliding hiatus hernia and very obvious reflux signs. Im back on pills for another month but then the next option will be surgery i think. I need something, my life hotally changed. Im putting weight on because i cant as i cant excercise...and im sure this isnt helping. My life changed over night and its driving me crazy...id never had any trouble with stomach issues before...id never even taken rennie!lol. I need to hear from someone thats suffering the same as me...no one quite understands how awful it is do they ​

 

[interchange]

I have reflux, hiatal hernia, and gastroparesis. I get it. The most effective relief for me has been lifestyle/diet modifications. I have seen a few people who have had Nissen's done, and all have reported success for the reflux symptoms. However, there is a "gas-bloat" syndrome that is pretty annoying -- basically it destroys your ability to belch.

 

[paul878]

Have you had a 24 hr pH monitoring study and an esophageal motility study done?

A Nissan fundoplication is a "functional" operation. It's not 100% effective. Up to 40% of patient still require long term PPI's postop. Also, some people cannot belch afterwards and it could lead to increased bloating. Think about it long and hard. Although the complication rates are low, a perforated esophagus is a disaster.

Check this out before you do the Nissan Fundoplication. The Nissan only last about 10years, then it have to be redone. There is a chance that it can't be redone after 10years.

http://linxrefluxsurgery.com/
http://www.youtube.com/watch?v=X0ExHyefFSA

I myself have reflux problem and I am waiting to see how this goes.
I rather wait 5 years then take a chance with the Nissan, the linx system can be removed or adjusted, the Nissan is NOT.

 

[wheresmybacon]

Guys, I had the surgery. I am cured. 100% cured. The only downside is I can't burp, but as long as I avoid gas-producing foods there's no problem.

 

[surfsatwerk]

Can you fart?

 

[Miramonti]

Check this out before you do the Nissan Fundoplication. The Nissan only last about 10years, then it have to be redone. There is a chance that it can't be redone after 10years.

http://linxrefluxsurgery.com/
http://www.youtube.com/watch?v=X0ExHyefFSA

I myself have reflux problem and I am waiting to see how this goes.
I rather wait 5 years then take a chance with the Nissan, the linx system can be removed or adjusted, the Nissan is NOT.

It has been about 7 years since my sister had the surgery and it is deteriorating and will need surgery again in the near future. It's not quite a 'disaster', but is a very difficult situation that leads to awful chest pains and discomfort.

Guys, I had the surgery. I am cured. 100% cured. The only downside is I can't burp, but as long as I avoid gas-producing foods there's no problem.

Good to hear it went well. I remember it was a slow recovery from the surgery for her, drinking lots of liquids, chewing food really well etc., but was an excellent experience, until recently atleast.

 

[wheresmybacon]

Can you fart?

Yeah it's kind of funny. I can't burp but I have thunderous farts now.

 

[wheresmybacon]

It has been about 7 years since my sister had the surgery and it is deteriorating and will need surgery again in the near future. It's not quite a 'disaster', but is a very difficult situation that leads to awful chest pains and discomfort.



Good to hear it went well. I remember it was a slow recovery from the surgery for her, drinking lots of liquids, chewing food really well etc., but was an excellent experience, until recently atleast.

The surgery was extremely painful. I actually don't know if it was the hernia repair or the nissen's that was so painful, but I was hurting pretty bad for about a week.

That said, based on what I've read and what my doc's seen, my recovery has been very fast. I'm working out again and it's just amazing. I wasn't able to run or even do weights with much effectiveness once my symptoms went crazy just after January 2012, primarily due to severe pain as well as asthma-like symptoms. Now I feel like I'm about 90%, and I had the surgery 2 months ago.

I'm taking it slow and haven't lifted heavy, but honestly at this point my focus is going to be more endurance-based anyway.

I would do the surgery again in a heartbeat.

 

[surfsatwerk]

Yeah it's kind of funny. I can't burp but I have thunderous farts now.

This pleases me.

 

[Stasio]

Hi guys,

I had very bad LPR for the past 3 years. I was on 2X 40mg esomeprazol, asthma inhalers, gaviscon and recently amitriptyline. I had constant shortness of breath, difficulty breathing through nose and constant throat irriation and regularly choking episodes. It feels like my left nose and throat has something blocking the airway and I can never get a full breath. I even have to wear nasal strips most of the time just to be able to breath effortless. I have had every test there is out there. I´ve been to 5 different ENT doctors and then only thing they could pinpoint this to was silent reflux.

I had nissen surgery 11 days ago and i´m still having those symtoms. I haven´t been able to reduce any medication. I still sleep elivated.Is this normal post-nissen? Do I need more time to heal? Right now I´m really just hoping that the nissen wrap became loose so there is some change for me to get better cause I really dont know what else to do. This sickness is the worst and it makes you so fkn depressed.

 

[Gokmen Gokmen]

Hi guys,

I had very bad LPR for the past 3 years. I was on 2X 40mg esomeprazol, asthma inhalers, gaviscon and recently amitriptyline. I had constant shortness of breath, difficulty breathing through nose and constant throat irriation and regularly choking episodes. It feels like my left nose and throat has something blocking the airway and I can never get a full breath. I even have to wear nasal strips most of the time just to be able to breath effortless. I have had every test there is out there. I´ve been to 5 different ENT doctors and then only thing they could pinpoint this to was silent reflux.

I had nissen surgery 11 days ago and i´m still having those symtoms. I haven´t been able to reduce any medication. I still sleep elivated.Is this normal post-nissen? Do I need more time to heal? Right now I´m really just hoping that the nissen wrap became loose so there is some change for me to get better cause I really dont know what else to do. This sickness is the worst and it makes you so fkn depressed.

Dear Stasio,
Hope you’re well.
What is the latest situation about yours lpr?
I have lpr too and in my country physicians usually don’t suggest Nissen surgery if you have only lpr symptoms.

 

[remusanu]

Guys, I had the surgery. I am cured. 100% cured. The only downside is I can't burp, but as long as I avoid gas-producing foods there's no problem.

Hi,
How is your HH after 8 years, i am curious.
thanks