Very afraid of getting wrapped. Please help!

It won't help much, but it seems you have no other options than surgery, i hope it will get better for you after surgery.

Sorry to hear of your difficulties!

I will tell you what was told to me last week by a GI, and yesterday by a surgeon, both at the Mayo Clinic in Jacksonville. For those patients they term as "respiratory reflux", or LPR, and those patients who either are intolerant of, or respond poorly to medication, surgery is statistically going to offer poor odds for resolution of symptoms.

I had the TIF procedure in August of '11, with "excellent" results of reducing reflux, and bringing me well into the "normal" range. But the symptoms in my throat continue.

What you'll have to decide, is if it's worth the risks of surgery to -- at the very least -- reduce your reflux episodes so that sleeping on an incline, Gaviscon, etc., will help to manage it into the "tolerable" range.

-Bruce

Jabronie, I am a worry freak and it doesn't take much to set me off. I had the surgery almost a year now...actually, a few days away from a complete year. For the first 5 months, I wished and prayed that every morning I woke up, I was in a dream and I never had the surgery....but today, I am so happy that I did it. You will be better off if you are a good candidate for the surgery. I wouldn't have survived if I had to live every day thinking I might get cancer or to live with the restrictions on a daily basis...Denise (on this forum) always remind us all that, to get the best possible outcome, is to have the best surgeon. Someone that has done hundreds of this type of surgery.

A cousin of mine did the surgery. She had terrible reflux and heartburn...even if she drank water, it bothered her. She had the srugery 6 weeks ago and today, she can eat anything. No more heartburn, no reflux. She still has some discomfort from the surgery but she told me at lunch today that it was the best decision she ever made. She cannot believe she suffered so long with acid.

Hope all goes well for you and after reading all these posts, you are able to make your decision.

Cindy

I was also very afraid before the surgery. I've never had any kind of surgery in my life. The recovery was difficult, but now 7 weeks later I am so thankful that I made the decision. It has changed my life... I feel 10 years younger. I am eating and drinking things I haven't in years without any consequences. No more pain every single day. Good luck!

Tony

I'm with Joy, I'd do it again in a heart beat! Well actually I did do it again, twice. I will do it again if I ever need to.

Take care,
Bill

Dear Jabronie,

I totally understand your fear.  There are so many scary stories on the internet that it kept me away from having the surgery for probably 5 years, and during that time my lungs were in horrible shape.  I had the surgery in February 2009 and am very glad I did.  I only wish I'd had the courage to do it sooner.

Here is a copy of some thoughts I wrote at about Day 19 of my recovery post-Nissen.  Maybe it will help.

Nissen Surgery Failures: My Thoughts:
Yes, there are many very disturbing stories all over the internet--enough to scare anyone away from this procedure. I spent four years searching the web, looking for information to help me make an informed decision. The internet sources I searched out provided me with an overabundance of reasons not to go ahead with a surgical fix.

It is clear that pre-testing is crucial to ensuring that a patient will be helped by this surgery. Motility tests (manometry--tests the strength and effectiveness of your swallowing muscles, as well as the strength of the LES valve.), 24hr PH Monitor, Barium Swallow, and perhaps a stomach emptying study, are all tests that can spot problems that could complicate this surgery.

Choosing a skilled and experienced surgeon is also critical. A surgeon who does an overly tight wrap can create swallowing problems--especially in someone who has slipped through the testing cracks, and has a swallowing problem to begin with. Careful selection of a good candidate is most important. Don't rush your way towards surgery. Go to a good GI doc, and thoroughly explore all your options. Once you have a trusted specialist, it's likely that he/she will be able to recommend a surgeon who is skilled in the procedure. Then check that surgeon's credentials further.

Make an appointment with one or more surgeons...ask lots of questions. Just because you meet with someone doesn't mean you have to go through with surgery. My family doctor recommend a surgeon, and I met with him/had tests done/was told I was a good candidate for the surgery. I was not ready to make that decision, so I went back to my GI doc, who looked at the results of the tests the other surgeon did, and ordered an additional test. After testing was done and we discussed the results, he suggested that I just go and talk to the surgeon...no rush...just discuss the procedure, and start to think about what I wanted to do. I ended up meeting with his recommended surgeon twice, and made the decision to go through with the surgery.

Keep in mind that many, many people have a Nissen Fundoplication and never enter any comments in a forum online. It's more likely that people who had bad outcomes will search the web for reasons for their suffering. Many, many successful surgeries happen, and you just don't hear about them. The more problems a person has with the outcome, the more likely you'll hear about his/her poor results.

It is too early for me to know if I'll be in the ranks of the successful, or unsuccessful procedures. I understand that I can not speak with any authority in that regard.

I do know that as an open procedure, this is a 50 year old surgical method, so it must have helped many people for it to have lasted this long.

Laproscopic Nissen Fundoplication has been around a much shorter time (approx. 10 years, I believe, but I may be off on that number). From what I've read, the move to laproscopic Nissens has been beneficial, in that fewer surgeons are qualified for to do non-invasive procedures, and it creates a situation where a few surgeons get lots more Nissen surgeries--which provides ample opportunites for developing skills necessary for successful outcomes.

So yes...it seems that there is a disproportionally large number of Nissen failure when you read forums such as these. If you go to surgical sites, though...read medical journal entries, you will find that the success rate is quite high. That doesn't solve the problem for people who have had poor outcomes, but it should create more confidence in someone making the decision to have this life-changing surgery.

Don't let scary stories make up your mind for you. Do the work to find out if this procedure is right for you. Then make an informed decision and go with it. Best wishes to anyone trying to make this difficult decision.
Also...good luck to those who are struggling with surgeries that didn't work out the way you had hoped. I hope you all find solutions to your medical problems.

Thanks again to everyone who shares their experience and hope on this forum. It has made a big difference to a lot of people.

This is from my recovery journal, at this link:

https://www.healingwell.com/community/default.aspx?f=45&m=2183443

After reading your description, I don't think there is any doubt that if you choose your surgeon carefully and have all the tests, that you will be very happy you had the surgery. 

Stick around this forum.  It was a lifesaver for me--the first place where I could meet people who had been through the surgery and had  postive, yet realistic, attitudes.  People here will answer your questions and provide you with support throughout your recovery.

Best wishes!

Denise

Jamaica,

Everyone gets heartburn...just not enough to cause them trouble.  Hence all the ads on TV for Tums and PPIs.  Most aren't bothered more than a short time. 

Of course when young, it's generally not a big issue unless there's a problem. The first time I was bothered by heartburn was when I was pregnant.

There's a difference between a fully functional LES and a wrap, which is a jury-rigged LES...not the real thing.  A surgeon can't make your LES work perfectly, so they have to come up with a back-up plan.

Obviously a wrapped stomach isn't the same as the finely tuned LES.  If the surgeon wrapped it so tightly that there was zero reflux, food would not through.  Plus, nobody has zero reflux absolutely all the time.

We just drew the short straw!  Oh well, that's life.  There could be worse things.

Best wishes!

Denise

Get the surgery It changed my life for 3 years before I got hurt again, I'm going to have to get it repaired but its a great surgery. Don't be afraid it will liberate you from pain and stop the reflux in its tracks.

jamaica --

You're getting caught up in semantics. GER is normal, GERD is not.

-Bruce

Hi Jabronie --

I can't really offer much in terms of the Nissen vs. Toupet, except for these two things: the two types of wrap usually are determined by the degree of reflux, i.e., Nissen most extreme, and Toupet perhaps a bit less. The other is that, statistically, there seems to be a slight advantage to the Toupet in patient satisfaction when it comes to things like dysphagia, burping, etc., but these two factors are understandable when the wrap isn't quite as tight.

As far as the acid in your mouth goes, a couple of Gaviscon tablets before bed will help limit your exposure by two or three hours. Maybe won't make the stuff in your mouth quite as bad. It's not normal, and is due to nighttime reflux. Your muscles in your throat are relaxed when asleep, you're laying relatively prone, and you're not otherwise swallowing, eating, drinking, so it can travel higher.

-Bruce

Hi Jabronie,

I would think that your manometry and level of reflux would be a determining factor over whether to do a full or partial wrap.  Just ask lots of questions and get the surgeons to make their point clearly, so ou understand.  Ask them how the tests you took are instructing their decisions.

Be sure that whatever surgeon you choose he/she 300+ or 1000+ in a larger setting.  This type of surgery has a big learning curve...it's an art form, and takes lots of practice.

I suggest you bring a list of questions with you to your consultations and look through the to ensure that all of them have been answered.

Best wishes!

Denise

 

Hi Jamaica,

I agree with Bruce.  There is a difference between having GERD, which is extreme, and having GER, which is commonplace.  Those of us with GERD have more serious defects in your LES valve Starry said, we also can have "silent GERD" and not even be aware of the harm it is doing.

http://www.uptodate.com/contents/patient-information-acid-reflux-gastroesophageal-reflux-disease-in-adults

When reflux occurs more often, is bothersome, and causes injury, it becomes labeled GERD. 

If your LES works the way it is meant to work, you may get some reflux, but not enough to cause harm to your esophagus.  Normal levels of reflux CAN cause problems in the lungs, throat, and larnyx, etc. with LPR, but that's another story.

When I had my PH monitor testing, I was always within what they call the "Normal Range". That's the range that anyone out on the street might have.  I believe it's anything under 14.4.  That is definitely some reflux. 

That's the crux the LPR problem.  LPR sufferers often suffer serious and uncomfortable effects from that "normal" reflux, and therefore kind of fall between the cracks.  My asthma doctor often grumbled to me about GI docs who don't understand that a small amount of reflux can cause big problems in the lungs.  He said that GI docs are only worried about large amounts of reflux that can harm the esophagus.

Say an LPR patient (like myself) has surgery to clear up symptoms (in my case very seriously ill lungs).  The surgeon CAN'T get the reflux to zero without closing off the opening to the stomach.  Therefore, that patient could still get reflux, and continue to have the same or similar symptoms after surgery.  Thankfully, very often the symptoms improve in spite of this.

Although all my PH tests scores were low--the first one was 4 (later, 10 and something like 14.8)--I was having acid-affected lungs.  That's the problem...if a surgeon can't get reflux to zero and is only going for "normal" amounts of reflux, LPR patients could have the surgery and continue to have the problems.  (If he goes for zero reflux, the patient would not be able to swallow.)

That said, I had the surgery in February 2009 and my lungs did improve after two and a half months, (it takes time to heal long-term damage) and that improvement has continued.  I'm certain I'm not reflux-free, but apparently my reflux is consistently better than it was prior to surgery because my lungs are healthy now (other than my normal allergy induced symptoms from time to time).

Someone like Jabronie is an ideal candidate with "off the charts" reflux.  A surgeon can be certain to make her life better with surgery, because she's not starting in the "normal" range.  They love a patient who has typical and especially severe GERD, since they can be confident that symptoms will be improved.

Best wishes in your quest for answers,

Denise