Nerve disorder causing nissen to come undone?

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babygirl10150
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Date Joined Jul 2006
Total Posts : 639
   Posted 10/26/2012 10:37 AM (GMT -6)   
After 3 unsuccessful nissens I seen a new surgeon. He said my wrap definitely needs to be redone, it's herniated, twisted, and broken down. He thinks that my nerve disorder is causing it to come undone. I'm not sure how that can cause it. So I'm wondering if anyone has any ideas? I see a new neurologist next month but I figured I would ask.
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~

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 10/27/2012 3:02 PM (GMT -6)   
Hi Michelle,
Sorry to hear about your wrap.  Do you get a lot of spasms in your esophagus?  I've never heard of a nerve disorder creating that kind of problem, but I guess frequent spasms could pull at the repair.  I'm glad to hear that you're going to thoroughly research this issue and see what's going on. Good luck with your neuro appointmet. 
 
Hopefully somebody out there will information about this be Googling and discover your thread.  I wish I could offer more help!
Very best wishes,
Denise
Words of wisdom by Eckhart Tolle:
"Whatever you fight, you strengthen, and what you resist, persists.”

“Worry pretends to be necessary but serves no useful purpose”

“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”

Sweet Potatoe
Regular Member


Date Joined Oct 2012
Total Posts : 87
   Posted 10/27/2012 4:52 PM (GMT -6)   
Michelle,
I wonder if you could go for TIF after having failed 3 nissens? That is a good question to ask your surgeon and Neuro Doctor. I feel so sorry for you. It has got to be so frustrating with misery. My prayers for you is that you find a solution to cure. Would a nerve disorder bother a TIF? Call your surgeons office monday and ask them. Good luck and keep us updated on how you are doing . We are here for you.
Anne :-)

babygirl10150
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Date Joined Jul 2006
Total Posts : 639
   Posted 10/28/2012 8:21 PM (GMT -6)   
Denise, I don't think I have spasms but I'm not sure. My manometry came back normal. I had the flu (not the stomach flu) 3 weeks ago and since then my reflux has been awful. Everything I swallow feels like it wants to come back up right away. All I taste is acid. I haven't eaten/drank in 3 days because it makes it so much worse. My one GI wanted me to have another manometry because he said the same thing, spams can cause it to come undone but I couldn't handle the test again. He won't redo the surgery unless I do the test.

Anne, my new surgeon did bring up the TIF. He said the H clamps might hold better but he wanted to wait until I talked to my neurologist. I'm beyond frustrated. It's so different when you have symptoms when you eat something you're not supposed to but every second is ridiculous. Every time I lean forward it feels like acid is going to come out of my nose. I've had a bad flare like this that lasted 2 years. I'm really hoping to not repeat that. I just don't know what else to do when nothing has helped.
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~

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 10/28/2012 8:33 PM (GMT -6)   
Hi Michelle,
You've definitely had a rough go of it.  I fervently hope that you find relief very soon.  Do you have a reason you don't want to have another manometry?  (I'm guessing you've got a strong gag reflex)  I know it's not a fun test (I've had 2), but if that's what you need to do, I'm sure you can find a way to make it through.
 
I hope you find answers ASAP.  We're all here to cheer you on! yeah yeah yeah
Hang in there!
Denise
Words of wisdom by Eckhart Tolle:
"Whatever you fight, you strengthen, and what you resist, persists.”

“Worry pretends to be necessary but serves no useful purpose”

“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”

babygirl10150
Veteran Member


Date Joined Jul 2006
Total Posts : 639
   Posted 10/28/2012 9:46 PM (GMT -6)   
The first time I had the manometry I was fine. The nurse numbed my nose and throat. The second time I tried was at the teaching hospital. The nurse put lidocaine on those long cotton swabs and shoved it up my nose. It didn't numb me at all. When she put the cath in it felt like it kept curling and I couldn't breathe I was gagging so bad. I asked her to numb my throat but she said they can't do the test then. My gi is at that teaching hospital which is almost 2 hours away. I asked him if I could do the test here and have them send the results but he wants it done there.
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~

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/28/2012 10:14 PM (GMT -6)   
Ask him if he's willing to numb both your nose and throat heavy.
My nose and throat was numbed for my test.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

babygirl10150
Veteran Member


Date Joined Jul 2006
Total Posts : 639
   Posted 11/1/2012 9:13 AM (GMT -6)   
I did ask and they said they can't do the test if I'm numb.
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~

opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 11/1/2012 5:19 PM (GMT -6)   
Michelle-

That seems odd to me. I have had several at regular clinics and teaching hospitals and they always had me snort the numbing gel and or sprayed the back of my throat. That's weird. I don't see a connection of the nose and top of your throat to the test.

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

babygirl10150
Veteran Member


Date Joined Jul 2006
Total Posts : 639
   Posted 11/3/2012 12:05 PM (GMT -6)   
Bill, that's what I had with the first one and I did ok. I only gagged when she pulled the cath out because the numbing was wearing off.

I seen my GI's new assistant. She's fresh out of school and had no idea how to answer any of my questions. She did refill my meds though. She pointed out the obvious that if my wrap is too loose and acid is coming up, a drug won't fix it but I feel a little better knowing that I'm taking something to keep the acid down even if it doesn't help most of the time. I see my neurologist in 3 days so I'll update with what she thinks.
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~

babygirl10150
Veteran Member


Date Joined Jul 2006
Total Posts : 639
   Posted 11/6/2012 10:23 PM (GMT -6)   
My neurologist said there is no reason my autonomic dysfunction will cause my wrap to loosen and has cleared me for surgery. So back to the GI I go to see what he wants to do. He brought up the TIF which I'm guessing would be the same diet as the nissen? He said it's less invasive which is great. I'm trying to think of any reason why/how my wrap has loosened 3 times in a year. It doesn't make any sense to me.
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~

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 11/6/2012 11:40 PM (GMT -6)   
Hi Michelle,
Will you see another surgeon?  It seems that if you've had 3 done by the same surgeon, no matter how wonderful that surgeon is, it would be worth considering a different surgeon for your next procedure.  You might want to seek out a center, because your situation is very unusual, and you will want to find the absolutely most experienced surgeon you possibly can. 
 
 Yes, the recovery is very similar with the TIF...the only difference really is the lack of external incisions.
 
I wish you all the best.  You've been through way too much. 
Take care,
Denise
GERD/Heartburn Moderator
Nissen Fundoplication 2/09
Allergy/Asthma

"Whatever you fight, you strengthen, and what you resist, persists.”

“Worry pretends to be necessary but serves no useful purpose”

“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”Eckhart Tolle

babygirl10150
Veteran Member


Date Joined Jul 2006
Total Posts : 639
   Posted 11/7/2012 9:16 AM (GMT -6)   
Hi Denise. Yes this is a different surgeon that would be doing the TIF. The surgeon that did my nissens basically threw me out the door, he had no idea what was going on and I'm sure it would ruin his 'no nissen failure' reputation. I have a ton of questions for this surgeon. My main one is if he would take down the wrap completely and start over. From what I've heard it's in really bad shape. I've been doing some research and watched some videos about the TIF. It looks a little more reassuring than a few stitches.
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~

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 11/7/2012 10:02 AM (GMT -6)   
Hi Michelle,
I'm guessing that your hiatus hernia repair has held, is that true?  I'm assuming that its also a necessary piece of even a TIF repair as well as the Nissen.  No wonder your wrap is in bad shape...it has been manhandled over the course of a year.  That can't be good.
 
I wish you the very best of luck, and hope you can get this thing straightened around once and for all!
Best wishes,
Denise
GERD/Heartburn Moderator
Nissen Fundoplication 2/09
Allergy/Asthma

"Whatever you fight, you strengthen, and what you resist, persists.”

“Worry pretends to be necessary but serves no useful purpose”

“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”Eckhart Tolle

babygirl10150
Veteran Member


Date Joined Jul 2006
Total Posts : 639
   Posted 11/7/2012 11:49 AM (GMT -6)   
I wasn't told I had a hernia repair until after the 3rd surgery. And I found out from a different dr that was reading the notes. My last scope 2 months ago showed another hernia. I think I need a digestive tract transplant. :) Upper and lower doesn't function properly.
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~

opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 11/7/2012 10:24 PM (GMT -6)   
Michelle-

I would seek out a very good nissen redo surgeon. when I had my 1st redo that is who I was sent to at Layola near Chicago. He basically takes care of swallowing issues and nissen redos.

When my esophagus tore the surgeon was concerned that after 2 nissens my stomach may have been too damaged to use when they thought they were going to have to remove my esophagus.
I am wondering if you have too much scarring for the TIF to be a viable option.

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

babygirl10150
Veteran Member


Date Joined Jul 2006
Total Posts : 639
   Posted 11/7/2012 10:31 PM (GMT -6)   
This is the surgeon my GI referred me to. I have an appt with him to discuss the surgery on Monday so I will be asking a lot of questions. I think this is my last chance to get it right. Nobody has said anything about scarring during scopes but not sure if that would be on the outside of the wrap and stomach? During my 3rd nissen the dr spent an hour removing scar tissue which he did not tell me during my post op visits. I found out by my GI reading the notes during an appt.

What do they replace your esophagus with if it needs to be removed? They can just take my stomach out and I'll live on TPN. Kidding! But I'm almost to the point of being serious.
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~

opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 11/9/2012 6:38 PM (GMT -6)   
Michelle-

I know exactly what you mean.

They were going to use my stomach for an esophagus/ partial stomach. They basically cut off the part that is rounded and make the stomach into a tube and attach it just below where the jaw attaches. Since I had so much scar tissue on and around my stomach they were prepared to use a piece of my colon as an esophagus. The good would be no more reflux and the bad, besides no esophagus was everything would just pass through into my small intestines and would have to deal with dumping forever.

Yes the scarring is on the outside of your stomach and that along with the cutting and stitching multiple times can damage the stomach. My last redo my surgeon spent almost 2 hours just cutting away scar tissue.

Praying this doctor is the right one and can get you all fixed up.

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

babygirl10150
Veteran Member


Date Joined Jul 2006
Total Posts : 639
   Posted 11/11/2012 9:36 AM (GMT -6)   
That is interesting Bill. I didn't realize they could use part of the stomach to make an esophagus. I've read about the colon though. I wonder how that works. The stomach is used for a different function than the esophagus...to manipulate it and put it in a place where it's purpose is different...if it would need to be retrained.

I see the surgeon tomorrow morning. I'm curious about the effects of a nissen x3 and then the TIF. I'm sure there is some damage done since the wrap is in such bad shape. If there is, will he be able to see that from the inside of the stomach? I'd rather have him go in lap to make sure everything is ok on the outside before he attempts the TIF.
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~

opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 11/11/2012 12:25 PM (GMT -6)   
Michelle-

When they remove the esophagus you no linger have a functioning stomach. The food just passes through into the small intestines. They loosen the opening into the small intestine since there is no longer stomach muscles to push it through easily.

They can't see anything from the inside and wuld have ro go in your belly to see that.

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

babygirl10150
Veteran Member


Date Joined Jul 2006
Total Posts : 639
   Posted 11/11/2012 3:10 PM (GMT -6)   
Does that affect nutrient absorption?
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~

babygirl10150
Veteran Member


Date Joined Jul 2006
Total Posts : 639
   Posted 11/12/2012 12:46 PM (GMT -6)   
Just got back from my appt. So mad!! My appt was at 10. The lady said my surgeon won't be there until 11 so I sit there for an hour with my 3 year old. Good thing I brought my ipod! I pay my copay, which is $60, they call me back. He comes in and asks if I talked to my neuro. I said yeah she cleared me. He says ok I want to do a bravo study and he will decide surgery on that. And left. Less than 2 minute appt.

Excuse my vent but for one, someone up front could have called and said dr wasn't there. Two, I can't afford to keep paying that much for 'pointless' appts. Between my neuro and gi I have 3 or 4 appts a month plus tests. That adds up. I think they should be able to call for these type of things.

He said if the bravo is normal he won't do surgery. So then what? I'm stuck like this until the acid eats away my esophagus or I get cancer? He wanted to do a manometry but I told him most of my problems are later in the day and at night so he decided on the bravo. BUT not ever night is horrible. Most but not all. Knowing my luck I wouldn't have any symptoms that day. Lol
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~

opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 11/12/2012 9:54 PM (GMT -6)   
Michelle-

So sorry your doctor is behaving this way. Almost sounds as if he is looking for someone else to handle this.

And yes, with the esophagus replacement you have to deal with malnutrition like someone with a gastric bypass.

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

mitsie
Regular Member


Date Joined Apr 2010
Total Posts : 129
   Posted 11/13/2012 1:16 AM (GMT -6)   
Michelle
 
I had the TIF surgery on 4/9/2010.   That surgery failed.   I had the nissen fundo done on 10/19/2010.    I am still having problems with burning tongue and nose and bad taste.   I had tests done and they came back normal and the dr said the surgery was good.
 
I am now having some burning in my stomach along with all the other symptoms.    But enough about me.
 
I would be very careful about having the TIF the surgeon I went to was in pittsburgh and he had quit doing the TIF because of failures.   Now there are some that are successful, but sounds scary to me.
 
Good luck.... Hope you get better soon.

Post Edited (mitsie) : 11/13/2012 12:40:33 PM (GMT-7)

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