Nerve disorder causing nissen to come undone?

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

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.

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.

I did ask and they said they can't do the test if I'm numb.

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.

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

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

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

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

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

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

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)