6 months post Nissen - anyone have any ideas/ advice?

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Mollymarie
Regular Member


Date Joined Mar 2013
Total Posts : 58
   Posted 6/24/2013 9:43 AM (GMT -6)   
Hi Everyone,
 
So I'm 6 months post wrap, things are great and not so great turn   I now have no regurgitation, my asthma has gone and I'm completely off my Asthma meds and my Nexium. I was lucky enough to have no rebound symptoms when I came off the Nexium but wow, I didnt realise how many side effects the Nexium was causing! All my dodgy heart rythms and evil headaches have gone!!!! It's evil stuff skull
 
Anyway, I saw my surgeon 6 weeks post op and was still in pain and suffering heartburn type pains, he said this shouldn't be the case so sent me for a Barium x-ray. This showed that liquids went done ok but then the coated cookie got stuck at the wrap site but was washed down with further liquid. The dr who reported on my xray said he didnt think the wrap was intact but then said he couldnt really see it anyway so my surgeon did a Gastroscopy and found that there was no inflamation and that the wrap was intact smilewinkgrin   and he has now discharged me back to my GI. So the not so great bit is the pain and weird swallowing type things: I get heartburn and chestpain but also I get awful back pain between my shoulders, this often appears awhile after I've eaten. I don't think I had this pain before the wrap. In terms of swallowing, I find that a lot of the time I have to wash food down with liquid ( as it showed in the x-ray), sometimes I think it's gone down but then take a drink and realise im washing the food down. Tablets are a nightmare, especially the small ones! I also find that sometimes I have to try to burp to try and get food/drink past the wrap, it's as if I have to open the wrap by burping. THis doesnt happen all the time though. Does anyone else have these problems? Am I going to damage my esophagus by food getting stuck? I'm so confused, worried and I don't like the pain. Would the surgeon have seen with the scope whether it was too tight.
 
I'd love it if somebody could give me any advice/ ideas on what it might be?
 
MM

Mollymarie
Regular Member


Date Joined Mar 2013
Total Posts : 58
   Posted 6/24/2013 9:50 AM (GMT -6)   
How could I forget? I get spasms too, which feel like a long hiccup. Are they spasms or am I just describing something else?

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 6/24/2013 7:10 PM (GMT -6)   
Hi Mollymarie,
Welcome to the Healing Well yeah yeah yeah Wrapped Club! yeah yeah yeah What you're describing doesn't sound normal.  Because your wrap is "intact" doesn't mean it is correctly constructed and working well.  I'm not a doc, but from my experience with my own wrap and others here, it sounds like your wrap is either too tight, or not correctly put together.
 
Another moderator here, Bill (opnwhl4) had a problem swallowing with his first wrap.  Here's his description of his first wrap experience:
 
Bill said:
Well that's an interesting story, kinda long too. Here goes.....
I had my first Nissen 6/6/06. After about 3 years of dysphagia and about 15 dilations with no help I was referred to Loyola Medical Center in Chicago. I had all the same initial tests and the finally found an abnormality on the 4th barium swallow, but they weren't sure what was causing it. After my wife and I insisting on having something done my surgeon decided to do an exploratory surgery. So on 5/18/09 I had my first redo. While in pre-op he asked me what I wanted him to do if they didn't see anything wrong or if they did find something wrong. Since he is a very experienced surgeon on Nissen redos I opted for him to do what he would want done if it was him on the table. After waking up he said he was very glad we kept after him to do the surgery because it was done incorrectly and was at a 90 degree angle at rest. No wonder food was getting stuck. Since it was done wrong it took almost 6 hours to redo it and I found out he brought in a lot of surgeons in training to see what not to do. I didn't ask enough questions of my first surgeon. I just asked if he could do it and he said sure. Since he had removed my gallbladder a year earlier I figured he could do it with no problem....WRONG.

Here's the link to his entire experience:

http://www.healingwell.com/community/default.aspx?f=45&m=2337138

You might want to get another opinion from a surgeon who's a pro at Nissens/Nissen redos.  You'd have to do some research to find the best person possible.  Think about it!

Very 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

Mollymarie
Regular Member


Date Joined Mar 2013
Total Posts : 58
   Posted 6/25/2013 7:50 AM (GMT -6)   
Hi Denise,
 
Thank you so much for your reply :-)   It's very interesting what happened to poor Bill. How do I get his attention on here? I'd like to ask him a couple of questions. Do I describe some strange symptoms then? I did think it was a bit odd that I kind of burp to swallow things on occasions. Did you or anyone on here get any of the symptoms I'm describing? I'm trying to guage what's normal post wrap in terms of swallowing. I get the impression the drs think I'm just whingeing and they have mentioned hypersensitivity or functional bowel (ie IBS). I understand where the hypersensitivity would come in regarding the pain but how does that explain the food getting stuck? Oddly, potatoes are the worst, particularly mashed!! Grr this is frustrating!
 
Also, how do you research the surgeons to find out their experience?
 
On the bright side, I'm very happy with being mostly Asthma free ( I now only cough after I've eaten) and no longer being on the meds.
 
MXX

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 6/25/2013 9:57 AM (GMT -6)   
Hi Mollymarie,
I'll drop Bill an email and let him know you have questions.  I'll include a link to this thread. 
 
It is not normal to have those problems at your stage in recovery.  You should be able to swallow normally by 6 months, barring any unusual setbacks like vomiting/retching.  (That can irritate things and slow up your progress...by the way, do you have anti-nausea drugs handy?  You should always keep them with you once wrapped. Vomiting/retching can cause lots of problems and damage wraps.)  It's normal to have to eat more slowly and chew your food completely before swallowing, but as long as you're following that "wrapped rule" you should be able to swallow without a problem.
 
Your surgeon is way off base.  Maybe if you had lower GI issues or stomach was bothering you, that would be a different issue.  But swallowing problems are linked directly to the wrap--or motility issues.  Were you tested with a manometry to measure your swallowing reflex before having the surgery?  If you have swallowing reflex problems, that could make it difficult to get food past your wrap as well.
 
Do you live near any large medical centers/universities?  How about a Mayo Clinic, John Hopkins, Duke University, or Cleveland Clinic, etc.?  That would be a great place to start.  You want to find who does "all the Nissens" or who specializes in redos.  If you're questioning how your wrap is working, you'll need to find someone who has lots of experience fixing other surgeon's problems.
 
I'm very glad your asthma has resolved.  I'm an asthma sufferer, too, and my lungs were a mess before my surgery.  I would have a redo in a heartbeat if I started having lung issues again!
 
I'll email Bill now, and he should respond pretty quickly if he's around.
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

Mollymarie
Regular Member


Date Joined Mar 2013
Total Posts : 58
   Posted 6/25/2013 12:01 PM (GMT -6)   
Hi Denise,

Thanks, it would be good to talk to him.
I had a couple of retching moments but nothing mad that hurt or anything and that was a while ago. But yes I do carry anti sickness tablets with me, I saw a post you had written about this and took your advice. Fortunately I'm not really a sickly person. I think I eat slowly and chew well, I'm certainly faster than post op but slower than preop. Maybe I could try even slower again.

I don't have any lower GI problems with the exception of mild gastroparesis. I did have a mannometry before the op and it did show dysmotilty, but the surgeon was not concerned ( although it didn't look mild to me on the screen, the waves hardly rose at all!!!), they were more concerned about the very low pressure on my LES. So they went ahead and did the full 360.

I live in the UK so unfortunately I'm not near any of those places. But I'm so glad I don't have to pay for all this or deal with insurance companies. I really feel for you guys. Although its a nightmare finding out if the surgeons over here are experienced, they are so private and never publish or talk about anything!!! I believe the guy who did it is very experienced but it's a very rare procedure over here.

Mol Xx

opnwhl4
Forum Moderator


Date Joined Dec 2008
Total Posts : 4961
   Posted 6/25/2013 7:30 PM (GMT -6)   
Mollymarie

Howdy! Sorry to hear you are having swallowing issues still. The mashed taters stood out to me. That is a tough type of food to get down. Seems strange, but they can pile up very easily. I now have some motility issues since my esophagus tear, but it hasn't caused much of an issue for me.

Do you know if your surgeon did the wrap by sizing it with a bouge or did a floppy wrap? If it was sized with the booge it might be a bit too tight. They can dilate the wrap some, but I would be sure to go to a surgeon who is very experienced with this. Also seeing a surgeon who specializes in swallowing disorders would be helpful. My 1st redo surgeon was a swallowing specialist and that helped out in my case.

If it was a floppy wrap done then your body might be taking longer to heal. Would you list what foods are the worst and what foods are better to get down? Without knowing how much of a motility issue you have it's hard to say what would have been better, but a 270 degree wrap might have been a better choice in your case.

This may sound silly, but are you remembering to chew your food to a liquid still and waiting about 30 plus seconds between each bite? I had to keep doing this for about 9 or more months with my 1st redo. I now can tell when food goes through or not and use what ever I am drinking to help it through.

The burping to get food through is something I am very familiar with. It's hard to understand unless you have to do it. It seemed like an air pocket to me and I needed to get it up to let food go through.

I had several barium swallows after my 1st nissen and I had to swallow a 12 mm wafer and they timed how long it took to go through. They told me it should go through within about 30 seconds, but mine hung there for 20 minutes until it dissolved enough to go through.
My 1st one was done wrong and the lower part of my stomach was brought up to make the wrap instead of using the upper only. that made my esophagus sit at a 90 degree angle until I swallowed then it would try to straighten out. This made it very difficult for them to figure out what the problem was, but they did finally figure it out.

DON'T GIVE UP! Someone will be able to help you. Whether it's just backing off your diet a bit and letting things heal more or finding if something is physically wrong in there.

Please feel free to email me any time. I usually am up very late and check my email regularly, well except for the last couple days since we had a tornado and the power just came back on.

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