Surgery Success Stories for LPR Patients

Hi Gondore,

While I didn't have the typical throat pain and tightness and acid in the mouth, I did have hoarseness and difficulty talking as well as severe lung issues. Most of my reflux was silent as well. I made all the lifestyle changes, was on maximum medication, and I was still having terrible problems. My DeMeester score was never high, so it took a lot of time to convince the GI doc to move forward with referring me to a surgeon. He wasn't convinced that the surgery was the answer to my problems.

Still, my lungs were so bad, I didn't think I had a choice. I had to try the Nissen fundoplication, and if it didn't work, I could rule that out. The LPR/atypical rates of success for the Nissen are generally listed at 75-80%, and I thought the odds were good enough that it warranted me getting the surgery.

It was the best thing I ever did. While I do still take a Protonix/PPI before dinner to ensure that my lungs are absolutely protected, after 2-3 months post-op my lungs improved 100%. I took longer for my voice to heal. I think some of my voice problem was created by my constant asthmatic coughing. My quality of life and health are improved tremendously. It's day and night.

LPR symptoms can be persistent. Sometimes the damage caused by acid take a long time to resolve. Some people who've had the Nissen for LPR still have a few symptoms that hang on, but overall see a vast improvement. Often people bothered by LPR symptoms have a very sensitive esophagus, and it doesn't take much to get it going.

It's definitely worth pursuing the surgical option. From my research and talking to others, I stuck with the Nissen because it's a proven procedure and has a long track-record of helping people. Others here prefer going the LINX route, and even fewer the Endostim. My GI doc said that the Nissen was the only procedure he'd recommend, as the others have not been tested by time.

Good luck finding answers to your questions! I expect others will be by soon to add their comments and share their experiences.

Best wishes,
Denise

Although I never had the ph testing or was diagnosed w/LPR. I did have a large paraesophageal hernia (2/3 of my stomach was in my chest). At 9 days out (Nissen 1/15) I'm reflux free with no meds where prior I was maxed out on Protonix & popping antacids like candy. my breathing seems to be improving & I definitely have less throat pain than before.

dencha:

Thank you for the information!

The weird thing with my asthma/shortness of breath is that I have never really had it up until about three months ago. I have been dealing with LPR for around three years (this is when I figured out what it was). I had throat clearing long before this but no other real symptoms. Around that three year mark things got really bad (i.e. bad throat pain, lump in the throat, acid coming up the throat, sinus problems, apnea problems, pain when talking, etc). Things eventually calmed down and I was probably at about 80% up until a couple months ago. The LPR came back with a vengence and out of this the chronic shortness of breath (problems inhaling) started. I also started suffering from bad chest tightness which really hadn't been an issue in the past. I have drastically altered my diet eating just meats, non-starchy veggies, and a little fruit. This has seemed to help the shortness of breath by about 30% so far (in two weeks). I seen an asthma doctor for the first time yesterday. They did a lung function test on me for the first time and without an inhaler I was at like 90%, with the inhaler I was at around 97%. This didn't seem like a huge difference to me but he diagnosed me with reflux related asthma.

So at 32 I am on Zoloft, Protonix 40mg x 2, and now two inhalers (Advair and a rescue one). Though my symtpoms definitely aren't life threatening like yours, I worry about the long term use of these drugs and the health issues they are bound to bring about. I am trying to determine if surgery is really even a good option at all for someone in a situation like this. I guess what I am really trying to figure out is if these diet modifications don't work out if this is any hope of every being 90-100% again. It seems like very few people with this condition ever reach that level though.

dencha:

Thank you again for all the great comments!

I have considered VCD as my problem. I find it weird though that it's almost non-stop as it seems like most people have VCD "attacks". The thing that makes it even worse is that I tend to get lightheaded when the breathing gets bad, which was almost all the time before diet changes (now it's about 70% of the time). I am going to try the Advair to see if it makes a difference...I pray it does. I had always heard that if you had problems exhaling it was asthma related and what I found about problems inhaling was mostly due to VCD. Unfortanetly there is nothing you can really do about acid reflux induced VCD except for get the reflux under control and hope the vocal cords do the same (at least that is what my research seems to suggest).

dencha:

That's what is sort of weird about my LPR, I don't really get horse. The main voice related symptom that I have is pain when talking. The pain is mainly in the throat. I have never lost my voice either.

Do you think that a 7% improvement on the spirometry is significant? As you mentioned earlier, because of the fact that all my problems are related to inhaling I sometimes think it's VCD. I am going to schedule an appointment on Monday to see a VCD expert. The makes me very hesitant to take the Advair as I have heard that it can make VCD even worse. Do you think it's possible that I have VCD and not asthma?

Is there a way to determine if I have any permanent lung damage or is this a wait and see type of thing?

Thank you again for all the help!

Gondore,

I had LPR and had the Nissen Fundoplication surgery. I'll just say it was the greatest decision I've ever made.

I had acid reflux problems on/off for about 6 years. Nothing serious, but it would just get triggered when I had anything vinegar related or alcohol.

Two years ago, out of nowhere, it became unbearable. I had trouble swallowing, was constantly nauseous, I felt like I was swallowing lumps no matter what I ate. I saw a couple ENTs and they both told me my throat was swelling up from acid reflux. I was put on the highest dosage of PPIs (40 mg nexium, twice a day) plus an H2 blocker, plus anywhere between 2-8 tums a day. NOTHING was working for me.

It's such an awful feeling to hear doctors tell you what's wrong, but not find the proper resolution to fix the problem. Finally I went through a battery of tests; the most important ones being a motility test and barium swallow. The motility test showed that my stomach was so weak, no medication would fix my problem. The barium swallow confirmed my acid reflux problems (during the test, the radiologist had me drink water which I was refluxing all the way to my throat).

My surgeon looked at all these results and decided surgery was my best option, and he assured me I would get great results because of how weak my stomach was at containing acid.

Low and behold, after a difficult recovery process (mine was about 6 months) I feel better than ever. I haven't taken a single PPI, H2 blocker, tums since the first month post-op. The surgery truly was a godsend.

I was on this forum like you looking for answers when I wasn't feeling well. After the surgery I posted here a little bit, but now that I feel better I rarely do. I want to make a stronger effort to help those who went through what I went through. Hope this message finds you.

I am in the same boat it seems. Constant shortness of breath, cough, mucus, but asthma docs say my asthma is fine because lungs are clear and O2 is great. I feel the reflux here and there it burns right in the middle of my chest. I'm starting to think I have sleep apnea too. This just came on 2 months ago but I know in my heart this isn't an asthma issue its a reflux issue. Prilosec helps minimally.

I had the full Nissen Wrap done on the 14th of May. I had all LPR symptoms but was not diagnosed until 3 weeks before surgery. My symptoms were thick mucus in the back of my throat-waking up at night choking-difficulty breathing-hoarseness-in the mornings my nose was completely plugged up like someone poured cement in there-vocal cord dysfunction.l I also have severe asthma and mild COPD which made the reflux more difficult to diagnose. Every time I complained that my breathing was getting worse I was told is was due to allergies or worsening COPD.
I'm now 17 days post op and I feel better than I have in years. The mucus in my throat disappeared 3 days after surgery and a few days later my nose was not stuffed up anymore. I also sleep much better at night. I was taking 4 nebubizer treatments besides my regular breathing medications and I'm now down to 1 treatment. I think I was getting too much acid into the lung. I hope it did not cause any permanent damage to my lungs and my lung function will continue to improve.
How did I found out about the LPR?? A barium swallow was ordered by my pulmonologist upon my request. It showed that I was refluxing large amounts of acid to the level of the throat. After that things moved fast and I had the surgery a few weeks later. Best thing I ever did !!

Elke55-
Your symptoms sound just like mine! Did you have any sleep apnea like symptoms as well? I find i am absolutely exhausted because I think my body is waking up in the night not breathing at times. I too am afraid my lungs are being destroyed everyday this goes on. What are your suggestions as to finding a great surgeon?

Eike55, I had same surgery and I dint feel lump in my throat than after about 4 days I could feel it. Real disappointed because that was one of things I wanted yo Ho away.

I have had LPR for 2 years. It continues to be a huge problem with trouble swallowing, mucous in throat, sore throat and just miserable symptoms. I have stayed on a low acid diet and alkaline water for many months. Been on ppi's for a year and half and finally went off and now just take Zantac and gaviscon advance. Nothing seems to help. It is really interferring with my sleep too. I feel like I now need to do something drastic. When this first started I had an endoscope, camera in nose and throat, manometry and ph testing. All proving my lpr diagnosis. That was 2 years ago and am going to start testing again with thoughts of nissen fundo. My real concern that I need help with is the following: I am in good health other than the LPR but I am always struggling to keep weight on. I just can not afford to lose weight. I'm also in my early 70's but in really good physical shape. Has anyone been able to have the surgery without losing lots of weight? That is my only concern. Also, I live alone. Would I be able to manage with very limited assistance.