Motility Issues and nissen

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babygirl10150
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Date Joined Jul 2006
Total Posts : 639
   Posted 3/7/2012 9:40 PM (GMT -6)   
I seen my gastro last week. He is having me redo the manometry under sedation since I couldn't do it last time awake. He thinks I might have a motility problem and that's why my wrap keeps coming undone. I have been having problems swallowing if I take more than 2 swallows at a time, like it wants to come back up. From what I understand, if there is a motility issue, the nissen should not have been done. I'm wondering if anyone has had a successful nissen with a motility disorder or what they would do? Do a take down?
Michelle

~Diagnosed with POTS 10/11~
~Nissen redo #3 coming soon~
~Nissen redo again 12/13/10~
~Nissen redo 05/10/10~
~Nissen 12/14/09~
~Colostomy 07/30/06~

theacidrefluxman
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Date Joined Oct 2009
Total Posts : 739
   Posted 3/7/2012 10:17 PM (GMT -6)   
Hi babygirl,

I have a motility issue and am not a candidate for surgery, but it is not due to my motility issue. I have had numerous doctors tell me that the motility issue doesn't mean that surgery is a bad idea...and in fact, many people with motility issues see their motility improve/get back to normal once the reflux is controlled by surgery. In other words, the surgery can oftentimes repair the motility issue since it removes the reflux and gives the esophagus time to heal, at least in younger people (I am 28 and have been told this).

So it may not have made you a bad surgery candidate in the past, I guess is my point ;)

LocalGuy23
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Date Joined Sep 2011
Total Posts : 620
   Posted 3/7/2012 10:52 PM (GMT -6)   
acidrefluxman,

what made you not a candidate for surgery?

babygirl10150
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Date Joined Jul 2006
Total Posts : 639
   Posted 3/7/2012 11:07 PM (GMT -6)   
I didn't have a motility issue until after my last nissen. He said that if the muscles aren't contracting correctly, it can cause the wrap site to come undone. I'm 28 also. He said if my manometry comes back abnormal I won't be able to get it done again but my wrap is a mess and can't be left the way it is.
Michelle

~Diagnosed with POTS 10/11~
~Nissen redo #3 coming soon~
~Nissen redo again 12/13/10~
~Nissen redo 05/10/10~
~Nissen 12/14/09~
~Colostomy 07/30/06~

LocalGuy23
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Date Joined Sep 2011
Total Posts : 620
   Posted 3/7/2012 11:17 PM (GMT -6)   
Michelle,

Wow you've been through a lot. Have your symptoms improved since having the Nissens?

babygirl10150
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Date Joined Jul 2006
Total Posts : 639
   Posted 3/7/2012 11:29 PM (GMT -6)   
Yes and no. I still have problems with reflux but my specialists think it could be more related to my pots and nerve dysfunctions than actual reflux. So I'm more of an oddball case. It's definitely a big mess that is going to take a bunch of tests and trial meds to get it sorted out.
Michelle

~Diagnosed with POTS 10/11~
~Nissen redo #3 coming soon~
~Nissen redo again 12/13/10~
~Nissen redo 05/10/10~
~Nissen 12/14/09~
~Colostomy 07/30/06~

LocalGuy23
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Date Joined Sep 2011
Total Posts : 620
   Posted 3/7/2012 11:42 PM (GMT -6)   
Michelle,

What is pots?

babygirl10150
Veteran Member


Date Joined Jul 2006
Total Posts : 639
   Posted 3/7/2012 11:51 PM (GMT -6)   
http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome

It's like a bunch of disorders thrown into one. My neuro thinks it's genetic which is why I had intestinal issues my whole life so it's not curable, only treatable.
Michelle

~Diagnosed with POTS 10/11~
~Nissen redo #3 coming soon~
~Nissen redo again 12/13/10~
~Nissen redo 05/10/10~
~Nissen 12/14/09~
~Colostomy 07/30/06~

LocalGuy23
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Date Joined Sep 2011
Total Posts : 620
   Posted 3/8/2012 12:20 AM (GMT -6)   
Thanks Michelle. I hope you feel better

opnwhl4
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Date Joined Dec 2008
Total Posts : 4961
   Posted 3/8/2012 11:53 AM (GMT -6)   
Michelle-

I too now have a motility issue. With all the work done to my esophagus. Mine is in the middle of the swallow. The top and bottom are good. What should be done with a motility issue is a modified wrap. 270, 180, anterior or whatever would work best.
I am not sure how a motility issue would make the wrap come undone though. I still believe something wasn't done correct with your first as mine was too.

Praying they get this figured out. BTW, mine is working great now. If I have to do it again I am asking for the open one again. For me it was much easier to recovery from. Guess it could have been my surgeon too though. But he was surprised to hear it was my easiest since he had to do so much work in there because mine was literally torn apart.

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

babygirl10150
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Date Joined Jul 2006
Total Posts : 639
   Posted 3/8/2012 10:37 PM (GMT -6)   
Bill, does stuff feel like it's coming back up when you swallow? I'm not sure if it's a motility thing or if it's getting caught at the wrap and I'm trying to swallow too fast. As far as I know, I have the full wrap but who knows anymore! Lol He said it's in pretty bad shape so hopefully there's a way to fix it without causing more problems. Your open was an easier recovery?!? I'd think that would be more difficult. My recoveries incision wise weren't too bad. I still think he nicked a rib on my left side or something because it's still sore to the touch. Have you had the MAC sedation? That's what I'm having done since I woke up with the twilight. It should be an interesting procedure. He said he's going to knock me out, do a flex sig (he thinks he can figure out my intestinal dysfunction), put the manometry tube in and then finish off the manometry when I wake up. And then I drive back the next day for part two of my EMG.
Michelle

~Diagnosed with POTS 10/11~
~Nissen redo #3 coming soon~
~Nissen redo again 12/13/10~
~Nissen redo 05/10/10~
~Nissen 12/14/09~
~Colostomy 07/30/06~

LocalGuy23
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Date Joined Sep 2011
Total Posts : 620
   Posted 3/8/2012 10:59 PM (GMT -6)   
Michelle,

Reading your posts makes me feel like a wimp. You went through so much and still have such a positive attitude. Good job. I'm still have my mouth and throat issues post Nissen :(

I know I shouldn't have done this but I took some pictures of my mouth last week and this week and compared them......they actually look better this week which is a positive sign.

I ain't no ENT but I can see visible damage......I'm going to see my ENT this weekend to evaluate the situation. If he says its not too bad...I'll take his word for it.

babygirl10150
Veteran Member


Date Joined Jul 2006
Total Posts : 639
   Posted 3/8/2012 11:43 PM (GMT -6)   
Maximus, I'm sure if you search my name you'll find a bunch of my 'whining' posts. Lol! I have awful days where I just want to break down and run but I've dealt this long. Keep your chin up!! :) Do you have sores in your mouth??? I did have biopsies taken of my esophagus because it was so eroded from the acid that the dr said it looked like cancer, negative whew! I get white patches on the back of my throat kind of like strep along with a lovely metallic taste.
Michelle

~Diagnosed with POTS 10/11~
~Nissen redo #3 coming soon~
~Nissen redo again 12/13/10~
~Nissen redo 05/10/10~
~Nissen 12/14/09~
~Colostomy 07/30/06~

LocalGuy23
Veteran Member


Date Joined Sep 2011
Total Posts : 620
   Posted 3/8/2012 11:45 PM (GMT -6)   
it's so confusing as to why Nissen doesn't stop this.....

or make i better.

Did you ever feel better from your nissens...

babygirl10150
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Date Joined Jul 2006
Total Posts : 639
   Posted 3/8/2012 11:58 PM (GMT -6)   
I did for about 2-3 weeks after each one was done. My first one was done loose and the other 2 were to tighten it so I guess it worked better when it was swollen. I'm fairly small in size so not sure if that has anything to do with my surgeon's judgement. I've had about 6 scopes also and I was symptom free for about 2 days after, assuming it was swollen then. I brought it to my surgeon's attention and he wrote it off as I was crazy, his head is so far up his behind. He told me from the beginning he's performed the surgery many times and none have failed. I guess I was the lucky one times 3! I have no clue what happened after the third one, how it got so messed up. Those few weeks were heaven. Ha! I could lay down when I felt like it, now I have to wait at least 5 hours after eating or drinking anything.
Michelle

~Diagnosed with POTS 10/11~
~Nissen redo #3 coming soon~
~Nissen redo again 12/13/10~
~Nissen redo 05/10/10~
~Nissen 12/14/09~
~Colostomy 07/30/06~

LocalGuy23
Veteran Member


Date Joined Sep 2011
Total Posts : 620
   Posted 3/9/2012 12:10 AM (GMT -6)   
I may have asked you this, but what are your symptoms again?

It's so weird because before surgery my symptoms were:

1. burning/uncomfortable/tickling feeling in my stomach (worst symptoms)
2. burning in my throat, mouth, and tongue
3. signs of dental erosion

Post surgery

1. the uncomfortable feeling in my stomach got better (so that's a plus)
2. however the burning in my throat and mouth remained :(
3. my lips are getting darker at the edges and sensitive....it's not really peeling/chapped...but red and sensitive

I believe most surgeons want to believe they did the surgery perfect so hence the patient should feel great

but in reality we feel what we feel right....

They say....well come back in two weeks and see how you're feeing....or it take months for you to feel better......

I don't get that how can you feel better in months when your symptoms is consitantly occurring on a daily basis.....will it magicaly one day stop?

Those are somethings I don't understand and it's hard to have hope when I feel and see these things. :(

babygirl10150
Veteran Member


Date Joined Jul 2006
Total Posts : 639
   Posted 3/9/2012 12:38 AM (GMT -6)   
My symptoms are severe nausea (worst of them all), regurg, burning throat, chest/back pain or pressure, burping (thankful I can do that after nissen), throat clearing, full feeling. I've noticed that about 2 hours after I drink I will get a tightening feeling in my stomach, a couple rumbles, and I'll have a small amount of relief...I'm guessing that's my stomach emptying?

I've never heard about the lip problem, that's interesting. Do you get regurgitation? Once in a while I'll get a sensation that feels like I'm breathing fumes, hard to describe.

I was told to 'come back in 3 months' for 2 1/2 years. Like I'd wake up one day and be cured. Or try this med and that one. I have every single one in my medicine cabinet right now. :/

Don't lose hope! Easier said than done I know but take one day at a time. I have no idea where I'd be without the specialist I have now. If I could marry him, I would (ok definitely not but pretty close) :) I was turned away from the drs and surgeons I've seen saying they couldn't help me which got me down hard. One determined, wonderful specialist gave me my faith back. I highly recommend him to anyone, not sure where you're located, I'm in WI.
Michelle

~Diagnosed with POTS 10/11~
~Nissen redo #3 coming soon~
~Nissen redo again 12/13/10~
~Nissen redo 05/10/10~
~Nissen 12/14/09~
~Colostomy 07/30/06~

LocalGuy23
Veteran Member


Date Joined Sep 2011
Total Posts : 620
   Posted 3/9/2012 12:45 AM (GMT -6)   
Michelle,

What kind of specialist are you seeing? A GI doctor?

How often is the nausea? I don't have that symptom but the burning is bad enough :( I feel like these problems just came out of the blue...... I was fine one day...then bam....life changed......

Well, maybe one day in the future future....they will have a real way to solve GERD/LPR.....

babygirl10150
Veteran Member


Date Joined Jul 2006
Total Posts : 639
   Posted 3/9/2012 1:01 AM (GMT -6)   
Yeah he's a GI. My nausea is 24/7. Some days it's debilitating. Other days I can function ok. Motion, mainly car, makes it incredibly worse. My symptoms started when I got pregnant with my daughter, she will be 3 in May. I was told it was just pregnancy heartburn, take a tums, it will go away after I deliver. Wrongo! I barely ate my entire pregnancy, gained barely 6 lbs...my daughter weighed in at 5 lbs 9 oz. The only way to escape the symptoms was to sleep so I did alot! I had everything tested from hormone levels to thyroid, was told to stop breastfeeding, get my tonsils removed, everything short from giving up a limb. I have a lot of trouble sleeping even with 7 inch risers and my pillows propped. The nausea and regurg are horrible at night. I usually stay up until I physically can't anymore so I get maybe 3 hours of sleep a night if I'm lucky.

Stress plays a big factor in how severe my symptoms are for reflux and pots. I find it amazing how much damage stress can do. Some days we all just need an easy button.
Michelle

~Diagnosed with POTS 10/11~
~Nissen redo #3 coming soon~
~Nissen redo again 12/13/10~
~Nissen redo 05/10/10~
~Nissen 12/14/09~
~Colostomy 07/30/06~

LocalGuy23
Veteran Member


Date Joined Sep 2011
Total Posts : 620
   Posted 3/9/2012 1:05 AM (GMT -6)   
Michelle,

I remember, when I first started getting my symptoms of GERD/LPR, I lost my sleep cause I was traumatized of what was happening to me. Yes I had my burning pains but I was in shock that I "me" was getting this condition.....

I went on sleep meds for about a month....but later I got my sleep back.

Even now I can sleep a good amount hours but you're right it's the only escape from the pains and nausea.

I often dream about this condition too.....it's crazy.... One day I will accept it and move on I just don't know when or how.

opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 3/10/2012 6:42 PM (GMT -6)   
Michelle-

Sorry it took so long to get back to you. I haven't had that type of sedation. I can feel food stop going down at times and have to double swallow. I don't feel it come back up though. Now when my wrap was torn apart I did feel food and drink come back up a lot.

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

biged11543
Regular Member


Date Joined Jul 2012
Total Posts : 42
   Posted 8/2/2012 10:44 AM (GMT -6)   
All,

I had my nissen done on 7/6/12. about 3 days after, I started noticing the burning throat and white tongue (had the throat burn prior but NEVER the white tongue). Since that day, the white/burning tongue has gotten worse. I went through a 14 day course of Diflucan (PCP diagnosed me with thrush) with no change at all. I now also have pain in my chest (behind breast bone), and symptoms that literally mimic acid reflux. My symptoms were NEVER this bad prior to surgery and I feel as though I'm far worse off. I know it's my 4th week of recovery and it's still relatively early, however, I'm getting worse, not progressing. Any comments, shared experiences, etc. would be greatly appreciate.

Thanks!

Mike :-)

kyheart
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Date Joined Apr 2011
Total Posts : 515
   Posted 8/2/2012 6:44 PM (GMT -6)   
MIKE
Welcome... First of all, please start you r own thread.. this one is rather old and you really will have a better chance of being answered by all if you start a thread of your own. That being said,

My advice to you first and foremost, is; Do not jump to conclusions.. you are very early in your recovery and your body has been through some heavy trauma.. please go to the beginning of this Gerd Forum and read the Gerd resources thread posted by the Administrator.. there are some recovery journals in there that you may find very helpful..

You failed to say what diet you are on at the 4 week point.. I was still on soft foods at this point.. everyone is different but, if you are trying to eat the wrong things this can contribute to pain in the middle/sternum area..

also; your esophagus is a "dumb" organ and it will mimic reflux pain for any pain you have in the area. We need to hear where you are at with your diet and your physical activity etc before anyone can give you the benefit of their experiences.. please start another thread and let us know what is going on with you.. we all want to help....

Reach for the sunshine... Rainbows will follow..
Sandi

biged11543
Regular Member


Date Joined Jul 2012
Total Posts : 42
   Posted 8/2/2012 9:11 PM (GMT -6)   
Hi Sandi, thanks for your repl. I posted a new thread: here is what I posted

All,

I thought I would start this thread to get some thoughts, suggestions, experiences, etc. that might help alleviate some of my concerns.

I had my Nissen performed on July 6, 2012. It will be 4 weeks tomorrow, August 3rd, 2012. I have my ups and downs though here are my primary concerns:

1. I've had a white burning tongue since day 3 post Nissen - I went on a 14 day course of Diflucan because my PCP diagnosed me with Thrush. No change after taking the Diflucan. This is driving me crazy - it's like when you burn your tongue on hot coffee and it never stops. It's whiter towards the back near my throat.

2. I have burning in my throat and chest, and sometimes in my stomach.

3. I have pain when swallowing and burping behind my breast bone.

My diet has been as follows:

1st 2 days post Nissen, liquid diet. Starting the 3rd day, I began soft foods (the "splat" diet - if you drop it on the floor it goes splat). I was eating things like mac n cheese, ravioli, etc.

By week 2 I started mixing in things with a bit more consistency.

Last week (week 3) I actually had a burrito bowl with shredded meat from chipotle. I also had chicken and fish. I feel like I'm almost back to a semi-regular diet.

Perhaps I am being over aggressive with my diet and that's causing my issues. Could food be getting stuck at the wrap site, fermenting, and causing the white burning tongue??

I haven't done much physical activity other than mow the lawn a couple times. No weight lifting or strenuous activity.

Right now I'm drinking Gatorade and it's burning my tongue....I just don't understand it.

I had a barium swallow post surgery and it showed the liquid going down VERY slow and getting stuck right in the middle of the esophagus; I can only imagine what food is doing.

I have an endoscopy next week; the Dr. is going to see what's going on as well as biopsy AND "brush" my tongue for a tissue sample to see if there is any bacteria/fungus/etc. present.

Phew, that was a lot. Thank you all for reading. I would sincerely appreciate any and all feedback, thoughts, experiences, advice.

Thank you!!

Mike
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