Intact Wrap...No Redo...

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dencha
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Date Joined Feb 2009
Total Posts : 7181
   Posted 12/17/2010 3:28 PM (GMT -6)   
Hi Friends,
I just got back from my surgeon's office. I had good news...my wrap is intact, and all tests indicated normal results.

The endoscopy saw no issues whatsoever. I did have the typical PPI stomach--covered in polyps. Nothing pre-cancerous. He said that off PPI's it may improve somewhat, but it's not anything to be concerned about.

The manometry measured everything, including the wrap strength, and showed everything to be normal and just fine.

Now the PH monitor was interesting. I had a demeester score of 10, which is normal. He said that he would never redo a wrap that was intact, normal, showed normal pressures with manometry, and a normal demeester score.

His argument was that it would be irresponsible to do a redo with manometry and endoscopy indicating no problems, and a "normal" Demeester score. He said that to lower that score to zero, the wrap would have to be so tight that I wouldn't be able to swallow.

Now, there is a question regarding the PH monitor scores in that there was a computer issue. He does not see any reason to redo the PH testing because he has never seen an intact wrap without a normal score, so he does not think it would be worth redoing. Also, if he is not going to do surgery, why even bother? He will redo it if my asthma doc requests, but in his mind, what's the point? He wouldn't take down my wrap and redo it because in his mind it is working exactly the way it should. What a bummer to go through all that and not get a reliable result. Oh well...

This time, when I was off the PPI's and at the end everything else as well, I experienced absolutely no heartburn. That was a very different experience than when I had it done before the surgery. Pre-surgery I was in agony with reflux. Because I experienced no reflux, I expected that things would look good wrap-wise.

My asthma doc will not be happy that I'm getting any reflux at all, however, as my surgeon said, you can't get to the zero reflux point with a wrap unless it's so tight that it is a struggle to swallow.

So, there you are. Now back to the drawing board as to why I'm still getting some mucous in my lungs. They are better, but not perfect. I'm guessing it's more an allergy issue.

Hope all is well for everyone,
Denise

Post Edited (dencha) : 12/17/2010 2:32:58 PM (GMT-7)


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 12/17/2010 3:31 PM (GMT -6)   
Well, thank goodness you don't have to endure another surgery.
Maybe it is allergy???
Joy

dencha
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Date Joined Feb 2009
Total Posts : 7181
   Posted 12/17/2010 3:35 PM (GMT -6)   
Hi Joy,
That would be my guess. Actually once the snow hit, it did improve somewhat. I'm breathing just fine...100 percent oxygen, no asthma really--good peak flows. Just mucous. It is annoying so I cough, which causes my voice to get hoarse. Hopefully my allergy/asthma doc can figure out how to help me. Maybe it'll get better with no pollen around. We shall see!
Denise

Alcie
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Date Joined Oct 2009
Total Posts : 5004
   Posted 12/17/2010 8:04 PM (GMT -6)   
My wrap was "normal" on endoscopy too, but on barium swallow it's partly in my chest.

Symptoms are chest pain mid sternum, nausea, and feeling full early. I also have difficulty swallowing hard things like pills, but I'm post-polio and nerves are dying. I'll need a re-do if it gets intolerable.
Alcie
 
 

dencha
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Date Joined Feb 2009
Total Posts : 7181
   Posted 12/18/2010 12:30 AM (GMT -6)   
Hi Alcie,
Sorry to hear you're having problem symptoms. I had a barium swallow as well, which showed no h. hernia. All the tests point to a wrap that is right where it should be and doing its job.

My surgeon said he would never do a redo on someone whose test results looked like mine. To be honest, during the time prior and during the tests when I wasn't taking any meds, I had absolutely no reflux, so I actually wasn't surprised.

He said that each redo is more difficult, and at this point he sees no point in touching my wrap.

You're right...the tests don't show anything. I remember Bill (he couldn't swallow) had issues that didn't show with the endoscopy and they did the surgery anyway.

In my case, my swallowing is fine, I don't have bothersome reflux...the only issue is the question of what's causing my (mild at this time) lung issues. I guess my asthma doc will be going back to the drawing board. Actually, they are better since the snow came.

Hope you find relief, Alcie,
Denise

stkitt
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Date Joined Apr 2007
Total Posts : 32602
   Posted 12/18/2010 8:14 AM (GMT -6)   
Denise,
 
Good news and I would hate to see you start the Rewrapped Club !
Thank you for bringing us up to date.
 
Take care and keep on advocating for yourself.  You are important in the lives of so many.

Merry Christmas ! May God bless you richly throughout this holiday season.
Hugs,
Kitt
 

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 12/18/2010 9:25 AM (GMT -6)   
Thanks, Kitt. The surgeon that I went to is considered by all the finest Nissen surgeon in the area. He specializes in esophageal surgeries, so is certainly qualified to make a decision on the status of my wrap.

While I know some issues can hide, he was extremely confident that I was not a candidate for a redo. I think he was also looking into the future when a redo might be necessary when he talked about how redos become increasingly difficult the more that are done. He said that in most cases the cause of wrap failure is a reoccurred of the hiatal hernia. He felt strongly that it would be wrong to redo a wrap that appeared perfectly intact and correctly done.

In addition, I'm not having swallowing issues, the manometry also indicated correct wrap pressure. My barium swallow was also negative of any problems.

Really, I began to suspect that my wrap was doing fine when I was off all meds and I had no heartburn. That was NOT the case before surgery. I suffered greatly at that time. I did not get a trace of rebound when I stopped the meds cold turkey.

Although the PH monitor results could possibly contain errors (he suspects it just made it impossible to read the button-pushing results where I recorded symptoms.) he did not see any reason to redo the test. Even if the results changed, he would not, in good conscience touch the wrap because the barium swallow, endoscopy, and manometry all point to the fact that it is doing just fine.

He's going to send a report to my asthma doc, and of course if he requests a redo of the PH test, the surgeon will do it again. It's just that he didn't see any point, as all other tests point to an intact wrap and he would not redo a perfect-appearing Nissen.

So, there it is.
Hope you're having a great holiday season. The big day is coming quickly! We spent the evening at my son and his girlfriend's house--they made us a wonderful dinner, and taught us a fun new card game. It was such a pleasure spending time with them.

Have a great day!
Denise

LdyJane
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Date Joined Jun 2008
Total Posts : 903
   Posted 12/18/2010 7:41 PM (GMT -6)   
Denise; great news!..and yet..

I can tell you that my reflux damaged my lungs; the alveoli are fibrotic and can never be repaired. There are times when something (maybe cold air, maybe some allergy) that will get me coughing and I get tons of junk in my chest; I generally start my Q-Var to get it to calm down.

The only ones who really knew what to do, how to find, how to interpret and what to do, was out at National Jewish in Denver. They're the #1 respiratory hospital and they can figure out anything and often have much better methods of treating. All treatment plans transfer back to your local physician, but they are available for consult for as long as you need it, even if it means (and it did) a 2 year interval. They actually found that my reflux was so severe, because I was atypical..who knew! and that led to my nissen.

I've developed heartburn again, it's from those darn spasms, my Demeester went from below 6 to upper normal; but only when I was spasming; this told them that the spasms were causing the heartburn, the heartburn wasn't causing the spasms. I'm on klonopin to help and it does, but I do have heartburn.

If you continue to have the respiratory issues, I would seriously look into NJ.

Janice

opnwhl4
Forum Moderator


Date Joined Dec 2008
Total Posts : 4961
   Posted 12/18/2010 9:14 PM (GMT -6)   
Denise-
Great news! If it wasn't for my swallowing issues I would have never known mine was done incorrectly. It was doing a great job stopping the reflux, just wouldn't let much go in either, LOL! Now you can relax and enjoy the holidays with your family.

Take care
Bill
opnwhl4
Moderator: GERD/Heartburn
Nissen 6/06 and 5/09

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 12/18/2010 9:24 PM (GMT -6)   
Hi Janice,
It is so good to hear from you. It is a dilemma, isn't it? when you have reactive lungs, even "normal" levels of reflux can be a problem. Yet, to achieve zero reflux, the tightness of the wrap would cause serious swallowing issues.

I will be interested in hearing what my asthma doc has to say. He was quite certain that my reflux was very bad to the point where it was causing my hoarseness. The ENT I saw did a stroboscope and found the vocal chords to be mildly inflammed and swollen--not what he would expect to see in someone with severe reflux.

The other thing is that when given spirometry tests my lungs are 100% capacity--as my asthma/allergy doc says, "Better than his lungs." He also states that if he could get all his asthma patients to that level, he'd be happy.

In addition, while I was off all meds in preparation for the testing, my lungs actually improved. I am not nebulizing daily any more. That is not to say that I am not still coughing some stuff out, but it is definitely better. What has changed? The ground is covered with snow. I'm still thinking that there is more of an allergic component to this than has been admitted.

Yes, even a small amount of reflux can create problems with reactive lungs, but from my experience, since the surgery my reflux levels have been greatly reduced. Hence, during the PH test I experienced no reflux that I was aware of.

I will keep the NJ in mind if I get further lung issues. (Hey, I'll keep Cleveland Clinic in mind, too) I may yet get referred to a pulmonologist. My asthma doc has mentioned that possibility.

Are you getting excited about your upcoming retirement date? You are going to love the freedom and reduction in stress levels.
Be sure to keep in touch, Janice.
Take care,
Denise

dencha
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Date Joined Feb 2009
Total Posts : 7181
   Posted 12/19/2010 1:00 PM (GMT -6)   
Hi Bill,
Thanks for your good wishes. Your case is what made me question whether or not the surgeon could make a decision if the wrap looks intact.

However, he felt that with his visual confirmation in addition to the barium swallow and manometry (even without the PH score, which he considers normal) he was confident that I did not require a redo...in fact he could not do one in good conscience.

We discussed how getting reflux to zero would impose too much resistance to food entering the stomach, and would create other issues. It's a definite balancing act.

I hope you and your family have a wonderful holiday!
Denise

LdyJane
Veteran Member


Date Joined Jun 2008
Total Posts : 903
   Posted 12/19/2010 5:44 PM (GMT -6)   
Denise, I'm having more and more episodes of heartburn and consequently, more episodes of hoarseness, coughing and that heavy chested kind of congested feeling. My feeling is that the wrap is more damaged than they can tell from the tests and it will probably continue leaking or what ever it's doing. I think, ultimately, I'll be back in the same boat I was in a couple of years ago.

I think anyone who falls into that atypical arena are difficult to diagnose and test using standard methods. Test results may look normal, but they aren't normal for us; hyper-reactive comes to mind, overly sensitive may be another term, but whatever people want to call it, we know we fall outside of the norm and, well, we're different!

Retirement day is the 29th; my co-workers put on one heck of a retirement party for me last Friday, it was wonderful.

Janice

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 12/19/2010 7:27 PM (GMT -6)   
Janice,
Happy Retirement! Hooray! It's not long now. I will be shocked if you don't find the reduction of stress heavenly--especially when it comes time to schedule doctor appointments or tests.

I know exactly what you mean. People hyper reactive are far more sensitive to any small amount of challenge. My endoscopy showed no inflammation, yet every morning I wake up to a feeling of inflammation in the wrap area. A dose of Carafate or Maalox does the trick of coating it and making it feel just fine.

The surgeon told me something I didn't know. Stomach pain doesn't necessarily translate to pain in the stomach area. It can be high or low in the esophagus, thus being interpreted as esophagus pain instead. Interesting.

I have dry eyes, too...the asthma, the dry eyes, the reactive stomach...all things indicating hyper reactive tendencies. On top of that I was diagnosed with Rosacea--another inflammatory disease. I use a cream that seems to keep it at bay most of the time, but it also affects my eyes.

When I had my first PH test I got a Demeester score of 4. My GI doc said with conviction that my asthma was not being made worse by reflux. What a load of bull. Both my family doc and asthma doc were certain it was creating my problem, but tests don't lie do they. Of course they do!

Still, there's no way to get to zero while still allowing normal swallowing, so those of us with sensitive systems just have to cope with a little reflux.

That said, I feel so much better than I did before the Nissen. While I was off meds--no discernible reflux--the total opposite of the agony I was in during pre-surgery PH testing.

I surely hope you can find some solution to your spasms. I'm sure the fear is that if you get a redo your spasms will damage that one as well. Are they still trying to find the cause?

I hope you stay healthy enough to enjoy your holiday festivities.
Enjoy! I'll be thinking of you.
Denise

LdyJane
Veteran Member


Date Joined Jun 2008
Total Posts : 903
   Posted 12/20/2010 7:50 PM (GMT -6)   
Hi Denise; I'm just irritated that after going through all of it; the heartburn is back as are the some of the other symptoms. When they look at you and say, yeah, sometimes that happens....grrrrr.

I think we keep the grant writers in business huh!!

I'll be fine, and I hope everyone else has a wonderful Christmas too!

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 12/21/2010 10:51 PM (GMT -6)   
Janice,
Seriously, I do not blame you at all. It is an extremely frustrating situation for you. All of us with reactive tissue have to deal with lots of additional problems. I just hope that they find a way to stop your spasms. That is just so annoying--you watch as they create more and more issues for you.

Hey, I don't know if, intact or not, my wrap is keeping enough acid from escaping to ensure that I don't get a lung reaction. I don't get traditional heartburn, but we all know that there can be silent reflux.

All I can say is that before my surgery I had reflux I could feel. There was no doubt about it. So post surgery there is definitely an improvement. Still, I'd really like to see what my asthma doc says when he sees the results. I think he was banking on my needing a redo. I'm not needing to nebulize, so that's positive.

Hang in there, my friend. Be sure to do whatever it takes so you can enjoy the holiday. I'll bet you wish you retired BEFORE the holidays, don't you? It's not long now, though! Your retirement party is out of the way, and soon you'll be able to relax and work on feeling better. Oh, if only it were that easy, huh?

Take care of yourself.
Denise

kbr
New Member


Date Joined Dec 2010
Total Posts : 5
   Posted 12/30/2010 3:14 PM (GMT -6)   
Hello,
I am new to this forum and have been reading your posts with great interest. My husband is 47 years old and previously in excellent health (even did Triatholons) until 2 years when he developed a chronic cough, sinusitis, and asthma like symptoms.
He has tried every inhaler, mediction, and has had now had sinus surgery twice with really no improvement in his symptoms. He has been oral pred on an off (but mostely on) for the past two years. His asthma is poorly controlled. Finally we said enough of this and went to National Jewish Hospital in Denver, which is an AMAZING place. They were able to test and diagnose him with severe reflux. The doctors there seem to believe that this is causing or at least contributing to many of his problems. SInce we returned home, he was seen by a  local GI MD for an endoscopy - confirming severe reflux and Barretts Esophagus.
Mind you, he has never had heartburn symptoms - all are the "atypical" symptoms.  We are trying to schedule a Nissen hopefully in January for him. His GI doc doesn't seem completely sold that this will help his asthma , but the doctors in Denver felt confident that this was provide some relief. This has been such a long hard journey, as you all know - and I hope and pray that the surgery is a success.  Dencha, I was trying to find your recovery post... how was your recovery afterwards? I want him to have a sense of that.. I understand you are in the hospital 1-2 days?   THe wonderful news is is that we live in LA and he can have the surgery done by Dr. Demeester, who is very well known here. How long after did you notice improvment with asthma symptoms? Were you able to get off any asthma meds since the surgery?  RIght now, he can't even run a mile. He used to do 6 miles a day. Life changing, for sure.
Well, it is great to know others with similiar circumstances are out here.  Hope you are all doing well and I look forward to communicating with you in the future. And Happy new year. GOod health to all in 2011 !

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 12/31/2010 11:35 AM (GMT -6)   
Hi kbr,
I'm crazy busy today, and don't have time to do justice to answering your questions. I will definitely be back to answer your questions for now. I also had atypical symptoms, and was put off for many years during which time I suffered greatly with asthma, and was on unhealthy doses of steroids--both inhaled and oral--in an attempt to help my sad lungs. Yes the surgery did help me, and my lungs improved by 2 and a half months out. There is more to my recovery, but for now I'll copy and paste my posts that reported on the first 19 days of my recovery. Hope you find them helpful. Please be sure to ask any other questions you might have. Best wishes!

Nissen Fundoplication Surgery:

Pre-Op
Hi all. Thanks for sharing your experiences on this forum! I am having surgery (provided my asthma allows it) on next Friday. I've read everything possible in the internet, and am going into this with eyes opened, but I'm glad to be moving forward. My asthma is just unbearable, and I have 3 doctors who are quite confident that ending GERD is the answer.

I've resisted for 4 years...since being hospitalized for an asthma attack set off by GERD. I've been nudged over and over by my doctors. I feel quite confident with my surgeon, who was recommended by my GI doc, and has checked out with other sources as well. He has excellent bedside manner.

rburnet, thanks for sharing your recovery experience. I'm a teacher, and am hoping that my recovery goes well enough that I can manage to go back to school in two weeks. Wish me luck!

If anybody has some advice for a fundo nubie, I'd greatly appreciate it. I'll let you know how I do.

Days 1 and 2:
Well, I'm on the other side! I had my surgery done yesterday morning at 9 AM. I had a hiatal hernia repair and laproscopic Nissen Fundoplication. My surgeon reported that things went well.

I did have one little complication. I have taken inhaled steroids for a long time for asthma, as well as having to take oral prednosone for about the past 10 days due to an asthma flare up. The doctor said that my tissue was very fragile as a result, so he took extra sutures in the hernia repair to ensure that it would hold.

Of course, I didn't know what to expect after waking up from surgery, and was pleasantly surprised. I had no nausea from the general anesthesia, my throat wasn't all that sore, and my lungs had handled the surgery well, with no asthma flare ups.

I had probably 3 doses of morphene through the day, before I switched to Lortab elixir. That worked very well, and is what I came home with.

My swallowing was a little spasmy at first, but got better as the day went on. I only had water all day, and a bit of chicken broth, and lemon ice at night.

Tips about the hospital stay:

Don't count on the nurses or dietary people to know what you should be eating and drinking.

Read lots about what to have and what to avoid.

I was greeted with a cup of water complete with straw. If I hadn't learned that straws are a no-no, I'd have gulped a lot of air into my stomach for no good reason.

I also had caffeinated tea on my dinner tray (which I switched out)

This morning I had a can of ginger ale and another straw. Also caffeinated coffee.

I had to ask for a gas-X product (simethicone) to be ordered, and it was a bit of a challenge to get it when I wanted it.

I'm home now, which is a huge positive.
Honestly, I've had much worse experiences with actual GERD episodes that burned my esophagus so badly that I couldn't eat a bite. This (so far) has been more comfortable than that. I've just got to remember not to get too feisty, and let myself heal.

IN THE HOSPITAL:
Everything went very easily. Pre-op and post-op procedures were fine. Recovery was a pleasant surprise. I didn't know what to expect, because I'd never had general anesthesia.

Once back in the room I just dosed on and off with the morphine. I didn't have any adverse effects from that, either. My swallowing wasn't as good in the beginning...little sips. As time went on, my swallowing got quite normal (water only), but I tried to be careful not to overload my stomach.

The nurse switched me from morphine to Loritab, so I could see if it was effective, since that's what they'd send me home with. It worked fine.

AT HOME:
Here I sit at the computer. I haven't had any pain meds since about 6 AM, so I'm feeling some discomfort.
Mainly in my left rib area...according to the resident, that's the port that gets the most activity and movement during the surgery.

I do have some of that famous left shoulder/collar bone are pain. They blame it on the co2 they pump into your gut so they can see what they're doing. It's uncomfortable, but bearable.

I had part of a soft scrambled egg, because I was really pretty hungry. It went down well, but I think my new valve is tired of working at the moment, and doesn't feel as good as it had when I didn't challenge it as much.

OVERALL:
While I know I'm in for some ups and downs, I feel that this is a very "doable" process, and I'm very glad I went through with this. I know that there are a lot of hurdles to pass, and I won't know of its ultimate success for quite a while.

I had to do this, though. Although the percentage for the lap Nissen's effectiveness in curing things other than GERD is only about 70-80%, I had to try this procedure. My doctors were just maintaining me. They had nothing else to help me, and really wanted me to give this a try.

Just before leaving for the hospital I had a severe GERD episode, and of course I could take nothing for it. I immediately started coughing and wheezing, and it took an nebulizer treatment in the hospital to get my lungs to calm back down. IT WAS A MESSAGE TO ME; This surgery will help your asthma, and the GERD definitely is irritating your lungs.

I stupidly did something I shouldn't have just now. I bit into a Dulcolax "softgel" to see if it was chewable, and got actually swallowed the liquid. It was quite irritating to my throat. Hopefully I haven't done something that will screw me up! Oh well...don't make that mistake!

I'll keep you posted.


Day 3:
Well, I've made it through my third day post-op, and I'm still here! My stomach felt more comfortable today. I'm on oral prednosone (due to persistent, severe asthma), and have been on it about 13 days (IV in the hospital), and that is very tough on the stomach. Because of that, I gave up the hydrocodone pain meds, and switched to extra strength liquid Tylenol (chosen because it's the easiest on the stomach). I use ice for the surgical pain. My left rib area is the most painful location, and I'm keeping ice on that most of the time. I'd rather deal with some pain, than an upset stomach right now.

By the way...my family doctor did call in a nausea script (suppositories) for me to have on hand. He understood that peace of mind is important at this time.

This morning, I don't know what I was thinking, (I guess I wasn't thinking)--I swallowed two 10mg prednosone tablets whole. They seemed to go down okay, but I won't do that again. I'll cut them into smaller chunks tomorrow.

So far, my swallowing is pretty good. I handle liquids just fine. My doctor sent me home to a soft diet, and I seem to be doing pretty well with it. Before my surgery I made up some fresh frozen squash, applesauce, and homemade chicken broth. Today I made whipped potatoes, and topped them with some locally made low fat turkey gravy. I also had some squash. A Thanksgiving dinner minus the turkey! I don't eat much, though...a quarter cup total. I don't want to challenge my stomach. I just eat tiny meals whenever I feel like it.

I slept from midnight to 6 AM last night...so that was good.

I have been trying to walk around the house as much as possible. At the hospital I walked a lot. A night nurse told me to walk whenever I got up to go to the bathroom. She said that was the trick to getting the gas to move out of the body. I still have some shoulder pain, but it seems to have subsided a bit. It's just a dull discomfort...not excruciating at this point.

Overall, I'd say..so far, so good. I was prepared for anything. I've had more torturous episodes with my uncontrolled GERD/gastritis that was caused by intolerable antibiotics.

I do have some phelgm in my lungs that I'm coughing up. I'm assuming this is not just limited to asthma patients post op. I'm assuming that many people experience the need to cough up some gunk. Am I right? I'd like to hear your experience.

Hope this record of my post surgical journey helps someone else who is struggling with their own decision to take the surgical route.
Best wishes to all.


Every day is an adventure. Still, to all those people out there who are fearful of this surgery (as I was)--in my experience, Days 1-4 have been much better than I had hoped. FYI--To help with others who are trying to relate to this experience...I'm a nearly 57 year old female. I don't think I'd mentioned that.

A few things that I'm noticing (and would appreciate experienced members to comment on):


Day 4:
1. Lung Issues

As I've shared, I have asthma issues, so my lungs are more problematic than in other cases. Do other (non asthmatic) recovering patients experience mucous in their lungs as well?

I made the mistake of trying the Unisom Melts, and they worked great in getting me to drift off to sleep again, but I ended up paying for a few extra hours of sleep with dried out mucous in my lungs, and a wheeze that won't quit. So--to anyone reading this who has asthma, I would recommend against the Unisom. (They're just Benadryl--which is an antihistimine/drying agent, that makes you sleepy) Lucky non-asthmatics, it works great for snoozing, and is definitely non habit forming.

I've been coughing way too much today, which hurts and worries me a bit. I'm also tapering off prednosone, so that could be part of the problem as well. I've emailed my doctor for advice. I'm sure this too will pass. Just one of those little bumps in the road.



2. Burps.

My surgeon told me that I wouldn't be able to burp, but burps are slipping out here and there. I'm not purposely burping, but every so often a burp is allowed--which is actually very nice, since it allows the bloating to dissipate.

The surgeon (another in the practice) who discharged me, said that I MAY be able to burp. I guess he was right!

Do I need to worry that because I can burp it will mean that reflux will also be allowed to pass out of the stomach? The resident said that the flap can allow a bit of air to escape without letting stomach contents out.

What has been the experience of others who've been through this? Are burps okay?


3. Wrap swelling over the first two weeks.

I noticed today that "lump" feeling--the feeling that I'm swallowing a big gulp of air--when I swallow food. I figure it's the beginning of the swelling, and expect that it will probably become progressively more challenging to get things swallowed, until the swelling begins to subside. So far, though, swallowing has been fairly easy. Better than I had hoped. Very "do-able", and much less scary than I expected.

Is it common to have this experience? Do the wraps always swell?

I'm determined to go with the flow of the recovery process. I wish my lungs weren't giving me fits, but oh well...that's why I'm here to begin with. The surgery isn't a magic wand! It's so important to maintain a positive attitude, and be patient, patient, patient!

Anyway...in case it helps anyone, I'm sharing my experience. If anyone has anything to add, or can help me through some of these issues, I'd appreciate it! Best wishes to all!


Day 5:
Another day, another adventure.

I went to the doc today regarding my lung issues. I'm back on an antibiotic for a suspected lung infection--I was being treated for one before surgery, and I guess it didn't totally resolve. I never really got a full course of antibiotics. I'm also continuing on 20mg prednosone twice a day to protect my lungs as well.

Because of those meds, my doctor put me back on Protonix for a while, to protect my stomach, which is very sensitive.

WRAP SWELLING
I knew this was coming, but it's not too much fun. I've got that lump in my throat that doesn't want to cooperate in getting food to my stomach. No complaints, though. I knew this was coming before I made the decision to go forward. I was a lucky one. After the surgery, and before the swelling, I had no difficulty at all, swallowing liquids or soft foods. Now it's definitely a challenge.

It will probably get worse before it gets better. I am determined to go with the flow. This too will pass.

SPASMS?
When I eat, I feel like I'm getting (non-painful) throat spasms, as things move at the unmovable wrap.

MUCOUS!!
When I drink or eat, and start having spasms, etc., my mouth begins making huge amounts of thick, "mucousy" saliva. I can't even stand to swallow it. It only happens during eating or drinking, and subsides shortly afterward. Has anyone experienced that?

INCISIONS
I haven't used pain meds in 3 days (even Tylenol)...I've been icing. The only incision that hurt is in the left rib area. OUCH. Ice takes care of it. Actually, lately it hasn't even hurt enough to ice. Coughing does flare it up.

WALKING
I've been walking for 10-15 minute intervals on my treadmill...all day long. A nurse told me to walk whenever I get up to go to the bathroom, so I try to follow that advice. I had a blood clot after my last surgery, so it's important to keep my legs moving...it's also good for my lungs. I also think it has help my shoulder/neck referred pain/loose gas pain.

FEELING REMARKABLY GOOD
I'm amazed at how quickly you can bounce back from laprascopic surgery. Nobody should fear the surgical pain aspect of this surgery.






Day 6:
Just a quick update:

1. VISIT TO SURGEON
All was well with incisions. He assured me that I don't have to worry about healing on prednosone. I'll heal. He's not worried that the tissue/sutures won't hold through coughing. He put extra sutures in the hernia repair (it was a small hernia). He's confident that all is fine with the repairs.

BURPS--he thinks I'm fortunate that burps are escaping, and that it's very normal, and a bonus for me. Burping does not mean reflux.
From my perspective, burps have been a lifesaver. When my stomach starts feeling bloated (after drinking or eating), the pressure shifts around, until a little bit of air escapes. This may repeat several times. I don't "belch"...the burps just happen on their own.

SWELLING OF WRAP--My surgeon reinforced the fact that the wrap will continue to swell over the next two weeks. He said I could eat anything I can manage--things that can be chewed thoroughly. He said that if the wrap makes it hard to get food through, (being sure to take small bites), just sip water/tea until it goes down. It will get through.

Surrender to the recovery process...it makes it lots easier.

I'll be going back for a follow up with him in a month.


2. LUNGS
I do have some fluid in my lungs. Hopefully the antibiotic I'm taking will take care of any residual infection from my pre-surgery lung issue.
Patience is a virtue!

I did have a bout of loose stool/diarrhea...I have a tendency to react to GI issues (even my endoscopy) with that problem. Also, being on the antibiotic...

3. OUT TO DINNER
Before coming home, we stopped at Friendly's for supper. I ordered a cup of decaf tea and a bowl of clam chowder. I just worked around the clams and enjoyed the broth, potatoes, and vegetables. Of course I didn't eat a whole bowl. I get stuffed before I eat much. I was also able to eat saltines...they chew up to total mush. YUM. It was a treat to have crackers and soup ! I brought the rest of my soup home to enjoy later.

All in All...
I'm keeping active...walk daily on my treadmill--10-15 minutes at a time...no incline...1.9mph. SLOW. It feels great, though.
Things going as well as to be expected...I was prepared for pretty much anything.
Heal well!


Days 9-13
First of all...to anyone who is agonizing over this surgery, stop. It is nothing to be afraid of, provided that you do your homework, take the required tests, and find an experienced surgeon.

I was very frightened, and struggled against the decision for four years. Granted, at 13 days, the jury is still out as to it's effectiveness in my case, but I can speak to the surgical experience.

I was ready to be tortured in recovery. I expected my stomach to shut down, and that I may not be able to swallow anything but liquids, and that I would have unbearable bloating and gas. I didn't know what to expect, and prepared myself for a horrific experience.

This fear was totally unwarranted. Once the anesthesia wore off, I had no trouble swallowing liquids. I went home after just one night in the hospital, on a soft diet. Within 6 days post surgery the surgeon told me I could eat anything that could be chewed thoroughly--warning me against sandwiches/bread/steak.

I have had a few moments of swallowing spasms during the 9-13 days post op, but very few. Actually Days 4-5 seem to have been my most difficult hurdle, swallowing-wise.

Throughout this time, I was having difficulty with my lungs, and coughing did hurt the incision at my left rib area. Over time, that incision has healed, and although I still have some coughing (better, but still mucous to raise), my rib area is much more comfortable. I don't even need to ice any more, and can just hold my arm there when I cough. Much improved on that front.

I'm now walking on my treadmill--no incline--2.5mph. I truly believe that my emphasis on walking and getting up and around right after surgery has made a huge difference with the shoulder/neck pain gas issue. It has resolved quite quickly, and is only occasionally felt--and then, very mildly. I would recommend getting right up and walking as much as possible throughout the recovery process.

I'm feeling much better--stronger--more comfortable, and I have lots more energy at this point.

I'm noticing that my stomach is beginning to accept more food without feeling so bloated and uncomfortable. I'm not getting as much gas, either. My surgeon said I wouldn't be able to burp, but my stomach does burp. I've never been one to force burps, and I don't now. My stomach burps itself whenever necessary, which really reduces the gas issues.

I took two weeks off from work (I'm a second grade teacher) after surgery. I've got enough sick time available that it wasn't a problem. I'm going to start back to work next week--mornings only--to give myself a chance to regain my strength before going full force. My family doctor, who is following my lung recovery, is very conservative in that way, and wants me to take it easy so as not to relapse.

My lungs are still far from perfect, but they're already better than they were pre-surgery. Also, everyone who sees me comments on the fact that my voice sounds so much better--I was very, very hoarse before the surgery.

I'll check in again as my recovery continues. Hopefully those who are seeking the information they need to make an informed decision will find these posts helpful.
Happy Healing!

19 Days:
Once again, I'd like to begin by reassuring those people who are searching these forums for information as they try to decide whether or not to go forward with a Nissen Fundoplication surgery. I know how hard it is to find positive comments on the web. I found so many negative blogs and forums that I waited way too long to make the decision to go forward with the surgery.

This surgery isn't as difficult to recover from as I had expected. I've posted earlier reports, so I won't repeat that here.

1. For those who want to avoid or alleviate shoulder pain (due to gas forced into body during surgery)--walk,walk, walk. Mine improved greatly with walking. In fact, when I went a couple days without walking as much, the pain came back. Once I went back to walking a lot, it went away again. The more you walk, the less pain you'll have.

2. Rib/incision pain subsided by the end of the second week--I didn't even need to ice. I think it would have healed more quickly if I hadn't been coughing so much. (I had a lung infection that started before surgery.)

3. By day 15 or 16, my stomach began accepting more food. (Not a lot, mind you...but still more than before.) Be careful not to overdo it, though. You'll be sorry if you stuff your stomach. Several small meals are better than one larger one.

4. Bready foods--even when chewed well--still seem to challenge the wrap.

5. I was able to eat stew cooked in the crock pot (for hours). Even the meat was able to be chewed to liquid form. If you can handle soft foods, you can (carefully) experiment with the slow cooker.

6. Creamy Chicken Gnocchi soup at Olive Garden is a great choice. Actually small bites/careful chewing--opens up a lot of options. Just don't swallow anything that you can't chew to a liquid/mush.

7. My doctor put me on Carafate to counteract stomach problems/acid/wrap irritation. It coats my stomach really well. I take it 4 times a day--1 hour before/2-3 hours after meals. I put the pill in a little medicine cup and add a bit of water to make a slurry that I can drink easily. It did work well to counteract the wrap irritation that was waking me up in the early morning (3AM and on).

8. Expect some irritation feelings around the wrap site. Expect some resistance at the wrap site. It's normal. Things get better, though. Just don't get too frisky with your eating. Your appetite gets better before your stomach can handle a lot. I found that when I became too frisky/eating too much, eating things that might be a bit too chewy, I paid dearly, with more wrap irritation, and stomach problems.

When that happened I backed off and started measuring my meals--a half to 2/3 of a cup is about all I can tolerate comfortably.

9. I've lost about 14 pounds, which I'm glad about. I can lose a little more without a problem. If I start losing more than I want to, I'll just pick my nutrition intake with some snacks in between meals.

10. I still have a persistent lung infection, and am now on injected antibiotics to get rid of it. I can't take antibiotics orally (except amoxicillin) without getting gastritis, which I don't need now. So I'll be going to the doc daily for some (ouchy) shots. I just want to get my lungs cleared. My asthma is the best it's been in years. So far so good there. My lung problem is the reason I finally had the surgery, and so far so good...once I get over the infection. I'm off prednosone as of tomorrow, so that's a happy development.

Hopefully this little journal helps someone who's looking for information and trying to imagine what the recovery will be like. It has been so much better that I had ever dreamed.
This is a great forum. There are many supportive and experienced members who will help you through.
Best of luck to anyone considering/or is scheduled for surgery.
Denise

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.

LdyJane
Veteran Member


Date Joined Jun 2008
Total Posts : 903
   Posted 12/31/2010 12:55 PM (GMT -6)   
Hello KBR, welcome. and welcome to a fellow National Jewish member. I went there myself, same symptoms, but was on PPI; but atypical and not severe enough..so was sent to NJ because of the breathing issues. You are so right, the Dr.'s there are AMAZING! I was sent to a GI at Rose for testing; they were amazed (as were we) at how bad it was, and it was the reflux that was at the root of the breathing. I did have the Nissen, it did fix the fixable parts of my lungs; I'm only on an inhaler during times when it's really cold or really cold and damp...like now.
My lungs were damaged by the reflux and that contributes to the tough to breathe times...but overall, that worked. My Dr. at NJ was Dr. Cott, he is still available if e need him..wonderful experience.
Since you were willing to travel to Denver, don't be afraid to travel for the best nissen surgeon either. A lot of the dr.'s do the surgery, but very few are skilled enough to do it.
Stay with us; the people here are incredible, the support is heartfelt and full; nothing you ask is looked at as insignificant, stupid or wrong; and being able to come back and ask is this normal? after or before surgery.

For me, for Bill, for Denise and others, we're kind of the "odd ducks" (I say that with love!!). We are atypical, we continue to have problems, some things have been fixed, complications develop, but having them here is priceless.

Janice

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 1/2/2011 8:41 PM (GMT -6)   
Hi kbr,
Janice is a great one to talk to, as she has had similar difficulties with her lungs, caused by GERD. As she said, she also went to Denver, and has recommended the facility highly. It's a place I would go to if I wasn't able to find appropriate help closer to home.

I had asthma before the reflux, but the GERD caused so much irritation that it really messed up my breathing. I do know that after the surgery, (if the rest of my body could handle it) my lungs would allow me to run, even with my asthma. Prior to the surgery my lungs were in horrible condition, and I couldn't do anything that caused exertion.

I'm sure Janice would agree that the sooner your husband gets the reflux taken care of, the better it will be for his lungs. As she said, it's extremely important that you have an extremely skillful surgeon (in Nissen fundoplications) do the procedure. It's great that you live in a big city like LA, so it's easier to find a great surgeon.

Good luck with your decisions, and be sure to keep asking questions!
Glad you've joined us!
Denise

kbr
New Member


Date Joined Dec 2010
Total Posts : 5
   Posted 1/3/2011 12:57 PM (GMT -6)   
Thank you all for your thoughts and well wishes ! Your insight and suggestions have been so helpful. Dencha, your details of the recovery are so helpful.. while it sounds very manageable, i don't think i realized that the full recovery was so long.. and that the swallowing /eating issues can be problematic.  I am sure I will be asking more questions as we get closer to the surgery date..  we need to send all of our records to the surgeon before they will schedule. After reading these posts, I am really pushing him to get moving on this but I know that when you have dealt with a problem for so long it can be frustrating and difficult to follow up with all of the medical apts. etc. I am trying to be supportive but I think the sooner the better ! I am going to share these posts with him tonight.. i think it will be very encouaging.  Ldy Jane, and fellow NJH -- yes, wasn't that the greatest place ever! Do you live in Colorado? It was worth traveling to. HOnestly, I don't think we would have found the reflux if it hadn't been for Denver. Since he didn't respond to maxmum PPIs , no one thought he had reflux and no one bothered to do the tests for it. My husband had Dr. Smith, he was WONDEFUL.. everyone there was wonderful.. that is nice you got to have your tests done at Rose .. i feel like we fell behind a bit when we got back to LA , had to find a GI doc, now finding surgeon,etc... And thanks for your mention of the skilled surgeon, I initially thought that any of the doctors at the bigger hospitals could do it, but you are right, it is better to find the BEST because it sounds like there can be complications. So now we are moving forward with that. I will let you all know how thing proceed, it is really nice to have your support , thanks to everyone !

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 1/3/2011 3:44 PM (GMT -6)   
Hi kbr,
We're very happy to help however we can. We were also in your situation...looking for answers and trying to make difficult decisions. Many of us felt it was important to continue to participate on the forum in order to "pay it forward", and help others as we were helped.

Please be sure to continue to ask any questions that may come to mind.
My experience has been that people here, who had been through the surgery, were able to help out with many of the day-to-day, nitty gritty information and suggestions that made things much easier. It's always good to know that someone else experienced whatever random symptom you're dealing with.

Doctors deal with the surgery and the medical piece, and people here help with the recovery. Most docs haven't actually had the surgery, so it's good to talk to others who have.

This is a very positive and affirming place, and everyone here will provide support in whatever way we can!
Take care and good luck with all the decisions you will be making. You already made a great one when you went to NJH!
Denise
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