Very afraid of getting wrapped. Please help!

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Jabronie
New Member


Date Joined Jan 2012
Total Posts : 6
   Posted 1/11/2012 12:34 PM (GMT -6)   

 

Hello everyone. I am new posting here but have been “lurking” for some time. I am very thankful for all the wonderful people here that help so many. I am hoping somebody will help me. I will be brief.

I have suffered with GERD/IBS for close to 15 years. I was on Nexium for 10 years until it stopped working 3 years ago. Since then I have tried EVERYTHING. Aciphex, Dexilant, Omep,…………to no avail. I have tried strict Gerd diets, been to half a dozen doctors, naturopaths, acupuncture……….i’m sure you understand. All of this because I am really hesitant of the surgery. I was only a few days away from having it last year but after reading so many horror stories online I backed out. I have very bad GERD. I barely eat right now. Water and rice.  My lungs are burnt and inflamed(CT scan), hoarseness, cough, horrible acid upon waking, burping, bloating…………… Both specialists I have seen say I am a good candidate for the surgery. My bravo showed acid production and GERD that was off the charts! Motility was fine. Swallow teats and everything looked normal. I am a fairly healthy 42 year old male. I have a rare neuro muscular condition that is similar to fibro but other than that and anxiety I am normal.

 

My dad past away last year from esophageal cancer so that makes me even more of a candidate.

I am crazy not to have this surgery right? I am so scared of the complications that it is stopping me.  the post scares me pretty good but not as much as lifetime side effects. Can someone talk me into this?! blush

 

Thank you very very much for your time. Anything would be helpful.

 

Jabronie


lanab
Regular Member


Date Joined Nov 2011
Total Posts : 136
   Posted 1/11/2012 12:41 PM (GMT -6)   
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.

opnwhl4
Forum Moderator


Date Joined Dec 2008
Total Posts : 4961
   Posted 1/11/2012 12:44 PM (GMT -6)   
Jabronie--

Welcome to Healing Well.

With what you have told us, I would go for the surgery. But then again I already have, so I am bias I suppose. I Dealt with my reflux for about 17 years before I decided to go with the surgery and it was the best decision for me. I have no reflux and eat whatever I want.

If you have any specific questions please fire away. We will be glad to help.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn
Nissen 6/06 and 5/09
#3 on 8/24/11

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 1/11/2012 1:46 PM (GMT -6)   
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

Nyteller
Regular Member


Date Joined Jan 2012
Total Posts : 59
   Posted 1/11/2012 2:11 PM (GMT -6)   
Jabronie:

As a newbie here, I have to say that if I had read all the postings prior to my surgery I probably would have backed out - and that was even through yesterday. But now I'm 8 days in and feeling so much better from just two days ago. Surgery is never an easy decision, but your journey sounds a lot like mine and I had to decide what sort of a life I wanted to live - one of fear or one of health.

There are so many posters here who have been thru this and I have to say I wished I would have made the decision at your age instead of waiting until I was 63.

Good luck with your decision and remember everyone on this forum is supporting you.

Nyteller

Cindy123
Regular Member


Date Joined May 2011
Total Posts : 175
   Posted 1/11/2012 2:40 PM (GMT -6)   
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

aciphexo
Regular Member


Date Joined Apr 2011
Total Posts : 377
   Posted 1/11/2012 3:03 PM (GMT -6)   
Yes, there are certainly many many success stories with Nissen - and from the description of what you are going through, it does seem like that you should be able to get relief from the surgery. Choosing the surgeon (and the team) who are really good at this and do many of these .. is very very important ..

bowecho
Regular Member


Date Joined Nov 2011
Total Posts : 146
   Posted 1/11/2012 4:27 PM (GMT -6)   
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

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/11/2012 6:16 PM (GMT -6)   
I was one of the "lung refluxers" and I had the 270 degree wrap two years ago. I can eat anything I want and I'd go back in a heartbeat and do it all over again if needed.
Yes, the recovery is tough but if you relax and go with the flow it will be better. Don't force the diet. Eat liquids until you feel you can handle pureed food. Then start soft foods and slowly add more solid foods. My eating restrictions lasted about four months, but it was so well worth it.
Don't force the activity. Take it easy for six weeks, no hard working or lifting.

This was my first hospital stay/surgery so I was freaked at first. But I decided that I was tired of the limits and misery and bit the bullet. It's worth the surgery for me.
Joy

Post Edited (couchtater) : 1/12/2012 4:35:47 PM (GMT-7)


opnwhl4
Forum Moderator


Date Joined Dec 2008
Total Posts : 4961
   Posted 1/11/2012 6:59 PM (GMT -6)   
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
opnwhl4
Moderator: GERD/Heartburn
Nissen 6/06 and 5/09
#3 on 8/24/11

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 1/11/2012 8:47 PM (GMT -6)   
jamaica --

No surgery or meds will bring reflux to 0%. To achieve 0% would mean that you wouldn't be able to swallow food! Most folks are resilient enough against "normal" reflux that PPIs or surgery will allow them relief of symptoms. I am not in this category, and am not tolerant of meds and apparently am extraordinarily sensitive to the remaining reflux...even though my last Bravo pH study showed that my reflux has been significantly reduced into a range that's normal, and close to what can be achieved with a Nissen.

I have only very infrequently had the typical heartburn symptoms, and that was before the surgery. All my symptoms are in my throat.

-Bruce

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 1/11/2012 9:51 PM (GMT -6)   
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:
 
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

opnwhl4
Forum Moderator


Date Joined Dec 2008
Total Posts : 4961
   Posted 1/12/2012 7:18 AM (GMT -6)   
Jamaica-

Everyone has some reflux, but most people's bodies are used to this amount and the body doesn't let on what is happening. Now some poeple has a hypersensitive reaction to "normal" amounts of reflux and feel it. also sometimes after surgery to bring the reflux into "normal" range our esophagus still senses this as too much. It is very possible for this to lessen over time as the esophagus realizes this is "normal" and reads it as such.
I have been told by several doctors the esophagus is a "dumb" organ and needs time to realize what's happening.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn
Nissen 6/06 and 5/09
#3 on 8/24/11

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 1/12/2012 7:33 AM (GMT -6)   
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

lanab
Regular Member


Date Joined Nov 2011
Total Posts : 136
   Posted 1/12/2012 9:05 AM (GMT -6)   
One guy wrote in another GERD forum that he didn't understand why he had a slightly soar throat since so long he can remember, from being child, and he thought it was normal in all humans to have soar throat.

This shows how much different each individual experience things.

Cmac3721
Regular Member


Date Joined Dec 2011
Total Posts : 36
   Posted 1/12/2012 11:25 AM (GMT -6)   
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.

imstarryeyed
Regular Member


Date Joined Nov 2011
Total Posts : 95
   Posted 1/12/2012 11:59 AM (GMT -6)   
Jamaica,

Sometimes, I think, we have silent GERD. I never suffered from heartburn or reflux but a barium swallow and scope showed that I had erosions and gastritis. I wouldn't have believed it had I not seen the pictures. I've never even taken Tums. I had to have the nissen surgery for a paraesophageal hernia that could be dangerous. Perhaps, eventually, I would have suffered but I'm 59 and have never had a problem.

Starry

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 1/12/2012 12:18 PM (GMT -6)   
jamaica --

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

-Bruce

Jabronie
New Member


Date Joined Jan 2012
Total Posts : 6
   Posted 1/12/2012 12:29 PM (GMT -6)   
Wow thank you all so very much for your info! You have already helped me so much. It is so wonderful of you all to take time to respond. I feel much better today. The fear of surgery vs the fear of cancer was really getting to me. The ultimate rock and a hard place.

I made another appointment with my first surgeon for next wednesday to talk some more. My questions now are which surgeon to chose. They both come highly reccommended. One is at a huge clinic in Portland 3 hours away and the other is local in a smaller town.

The other question is a full wrap or partial? One says full the other said partial.

Any thoughts?

One more? :) Even though I sleep with my bed on blocks and use a wedge pillow and wait 6 hours after eating before I go to sleep, I still wake up with yellow/brown acid in my mouth that buns. Is that normal? Is it a bad sign?

Thank you

Jabronie

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 1/12/2012 12:48 PM (GMT -6)   
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

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/12/2012 5:45 PM (GMT -6)   
If you have any motility problems a loose wrap is better. If your swallowing is strong a full is best.
I have a loose wrap, but I have a mild motility problem. My wrap is a 270 degree wrap and works fine for me. My surgeon was one of the doctors who believe a loose wrap is the best wrap.
Joy

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 1/12/2012 6:10 PM (GMT -6)   
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
 
 

Nyteller
Regular Member


Date Joined Jan 2012
Total Posts : 59
   Posted 1/12/2012 6:17 PM (GMT -6)   
Jabronie,

I agree with Denise. Make sure which ever surgeon you chose has a long track record in these types of procedures.

I live in Las Vegas and traveled all the way to USC Medical Center in Los Angeles because I wanted someone top in this field to do the surgery. Take your time and make the right decision - for you about this surgery.

I wish you well and here's to a healthy and healed 2012!

Linda

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 1/12/2012 6:32 PM (GMT -6)   
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.
 
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
 
 
 

Jabronie
New Member


Date Joined Jan 2012
Total Posts : 6
   Posted 1/14/2012 11:34 AM (GMT -6)   
Just got my test back and trying to make sense of it all. My Demeester sccore was 70.3 at its highest and 31.5 at its lowest. I am assuming that is not good.
 
My swallowing test was a bit misleading because the doc said the lady that gave the test did it wrong.
 
The GI nurse called me yesterday and said the doctor strongly suggested that I get the surgery.
 
I am wrecked by this!
 
I no this may sound strange but being a man i am afraid i will be so bad of physically after the surgery that my wife will suffer just watching me. I know it sounds like pride but it is where I am mentally right now. I do not want to be a medical burdeon to my family.
 
Jabronie
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