Concerned about recovery period/whether to go ahead with Nissen

Hi there

Firstly - so glad I found this board, although it's easy to get lost in the web of reading everything! I am booked to have a nissen fundoplication next week. Some history (I'll try be brief).

- Am female, 29 years old
- Have always had issues with clearing my chest/throat.
- Had tonsils removed when 16, sinus surgery in early 20s - FESS and septoplasy. Helped stop recurrent sinus infections.
- Trained as an opera singer, during this time had a lot of trouble with throat clearing (~2009)
- Saw an ENT, diagnosed with silent reflux
- Took PPIs on and off over the years
- Began to have more 'normal' reflux symptoms if I didn't have the tablets
- Moved from New Zealand to London in 2014
- Began to have to cough a lot more - throat clearing/feeling a build up of phlegm just below throat/top of chest
- Also began to vomit food/acid after meals at times (typically dinners)
- 2015 see a gastroenterologist who completes GI endoscopy, pH manometry and PH study. Results show - reflux (3.7% normal less than 4.2% with a demeester score of 15.2 normal less than 14.7. 36 acid reflux episodes in 24 hours. Diagnoses oesophageal reflux and dysmotility with weak (but coordinated) perisalsis. He quotes "with such a degree of poor peristalsis anti-reflux surgery would not be advocated especially with such low levels of acid reflux."
- Went back to PPIs full time - omeperozole 20mg
- Coughing/clearning continues, starts to get very very frustrating
- See an ENT late 2016, he scopes and all looks clear. Again suggests reflux. I move to 40mg of omeperozole
- See ENT again, clearing no better. He suggests seeing a different gastroenterologist
- Gastro completes gastroscopy, nothing too significant appears

Since then, I've had some nasty reflux episodes, even while on PPIs. One week throat clearing was so bad, I went to doctors convinced it was my chest. Nothing to show (and have since had chest/sinus CT scan and allergy tests that show nothing) and am put on esomeperozole. This gives some immediate relief, but loses effectiveness quickly.

Have continued to see/speak with gastro. He suggests laproscopic nissen fundoplication, for which I'm booked in for 25 May. Said three-four weeks off work, should be back to normal 6-7 weeks. But reading through these boards, it feels like it will be much more intense than that!

I have a fairly busy summer - eg am attending a festival 7 weeks after surgery where I won't be able to cook my own food. My symtoms are driving me nuts. I think that surgery is the best option to try and help.Even on PPIs I'm not getting full relief from 'normal' reflux nor the constant coughing/clearing.

What would you do if you were me? Delay surgery till after summer? Have now but have a real plan to help recover?

Would you also be concerned that one surgeon said surgery not a good option, then the other suggests it is?

Achhhh, I am so confused!

Thanks

Rachel

Hi Rachel,
Sorry to hear of your trials and and I can relate to many of the things your experiencing.

I had nothing but silent reflux symptoms to indicate I had a problem. Cough, throat clearing, hoarseness and hearing problems when everything started. I used PPI medications to help with some of the symptoms but not all. Throat clearing and hoarseness persisted over the 12 years since I was diagnosed. I'm not currently a performing vocalist but did when I was younger and still like to sing as often as I can fit it in. However, my voice suffered because of the reflux.

I was diagnosed with a hiatal hernia, went through the tests and it was suggested that I have surgery. I opted to stay on the medications until my kids got older and I could better deal with the recovery from surgery. I had a hernia repair with a Nissen Fundoplication on February 21st this year (02/21/2017).

I don't remember my score but my manometry test showed I had good movement of food to my stomach. No concerns with that in mind regarding having the surgery. I think this is the area you'll want to make sure about regarding this surgery. Getting food into your stomach past the wrap cannot be taken lightly. I had a visible hernia that left open the valve to my stomach so I opted for surgery. With the conflicting opinions from your doctors you're right to be concerned. Investigate further, is my opinion.

Regarding recovery, your gastro doctor is giving you a pretty good estimation of a typical recovery from surgery. Clearing up the reflux symptoms could take longer depending on the level of acid damage you've had. I was off 3 weeks, part time the 4th and 5th. Full time since the 6th week. I'm 49 and was in excellent health before surgery. My diet is the number one issue I have to manage even at 12 weeks. What I eat, when I eat and how much I eat is very important to how I'm doing. I've lost 27 pounds since surgery and struggle with getting enough calories to keep up with my increasing activity levels. It's not exactly "back to normal" when thinking about the after surgery condition but more like a new normal.

A better new normal regarding reflux for sure.

To address your questions specifically. These are my opinions only and not medical advice.
What would you do if you were me?
Delay surgery till after summer?
Have now but have a real plan to help recover?
--
I'd wait. Recovery was a lot harder than I expected. You'll need more than 6+ weeks to make adjustments to a new normal. Maybe it will be better for you than it was for me. But again, I'm healthy, had normal swallowing function and a diagnosed hernia that needed fixed.

Would you also be concerned that one surgeon said surgery not a good option, then the other suggests it is?
--
As Susie stated and I mentioned this should be investigated further. It's just my opinion but but I'd hesitate to get surgery with the differing options from your doctors.

I'd like to add that the surgery helped with my silent reflux symptoms. No more medications, my sinuses are clear like they've not been in many years, and the hoarseness in my voice is starting to clear now. It's been very emotional for me to get my singing voice back to even a small degree and it's getting better as each week goes by.

Sincerely,
Mark

I, too, am scheduled to have the Nissan Fundoplication surgery on June 14. I have been seeing an excellent Gastrointestintologist for several years now. He has had me on Pantoprazole, Dulera and even an over the counter Famotidine pill I take every night to help with the heartburn while I sleep. My throat feels like there is something stuck all the time. I have this irritating tickle that wakes me up and is so bad I have to stop what I'm doing, no matter where I'm at, and go clear my throat. I also have this terrible chest pain at least once a week that feels like a heart attack, which now I know is related to my GERD. In summary, my GI referred me to an excellent surgeon who has performed this surgery many times. I do believe the surgery will help me, I am just real nervous about everything post op after the surgery. It helps to read other posts of others who have had the surgery. I am hopeful.

Rob

what went wrong for it to stop working?

Hi everyone,

I wanted to come back to reply to this - I'm so sorry it's taken me so long! I really appreciated your responses, and at your suggestion I went to have a second opinion, cancelling the planned surgery.

I saw another specialist, who firstly said he wasn't sure if we could definitively say I had reflux, as tests I had two years ago didn't 'prove' it enough.

I had a bravo PH test for 96 hours (which I found UNBELIEVABLY painful, it was really difficult) and had the results back that show yes, I absolutely do have reflux. I don't have the results on me, but I had about a 10% reflux coming up, which is double what it should be, and he described as "moderate." When I was off my esomeperozole, I was regularly vomiting after meals and very, very uncomfortable. He said the two options for me would be the fundoplication (he wasn't concerned about the motility) or the Stretta procedure.

I think the Stretta option may be best for me, however, my insurance is saying they won't cover it at the moment as it is 'experimental' treatment with no conventional alternative. We're trying to see if they will change this, but I don't like my chances. So maybe I will be going back to the fundoplication option!!!! I will keep you updated.

Thanks,

Rachel