Upcoming Nissen Fundoplication - Looking for Guidance & Support

[SCjason]

Hey Everyone,

This is my first time posting here but after doing a lot of research on Nissen's, this forum seemed to be the most updated. I am 32 and have been suffering from GERDS since I was 18 when I was diagnosed with it after it put me in the hospital for trouble swallowing, shortness of breath, and chest pain. On the 3rd day the Dr's did an Endoscopy and located several ulcers in my esophagus and said I had GERDS.

My family doctor treated me for about 8 years but every new medicine that he would give me would last around 2 years and stop working. Finally, he referred me to a digestive disease doctor. He continued with medications and performed an Endoscopy on me every two years. Again, around that time the previous medicine would cease working. Eventually, I ended up taking the most recent medication, Dexilant (formerly Kapidex). I started off at 30mg, then 60 mg. Back in December it stopped working and he then put me on a cocktail of Dexilant, Pepcid, and Protonix. That cocktail worked for 3 weeks and quit working in January.

My GI Dr. said I was a great candidate for a Nissen and referred me to a surgeon trained in performing the procedure. I hesitated at first and decided against it, but the symptoms were getting worse. My last Bravo gave an above average reflux reading every 15 to 20 minutes with or without food. He told me that there were no more medications on the market so I went and saw 2 highly recommended surgeons in my area. After choosing the one I felt the most comfortable with, he scheduled me for the motility test (which by the way calling it hell would be an understatement) and then he also did a stomach emptying test on me.

I am scheduled for the surgery in June. I understand that sometimes the Internet can be the worst of enemies but it seems like for every 1 feel good story that I read, I am reading 9 horror stories. Needless to say I am not wanting to have the procedure done to simply stop taking medications, nor am I wanting to have it done because I have had reflux for only 6 months so I think after suffering from it for as long as I have, I would possibly have a more positive outcome then others who rushed into the surgery. But needless to say, after reading forum after forum, this procedure really has me scared. I had a ventral hernia repair done 4 years ago so I am well aware of the uncomfortable recovery that comes after a abdominal laproscopic procedure and I am prepared to handle that. But I just can't get past wondering if the side effects of a Nissen is better than living with GERDS which has just become a common part of my life?

The surgeon was very positive (of course). He did tell me the recovery would be long, that I would be on a liquid diet for 2 to 4 weeks, that I would not be able to burp or vomit, and that after 10 to 15 years the surgery MAY become ineffective so it wasn't like he blindsided me, but I am still very hesitant to have this done.

I am not sure if I am looking for support, reassurance, or just a reason to run but any comments would greatly help me either way.

Thanks everyone!!

[karajo]

I too feel VERY full, usually after 2 bites of food.  And feel that way for hours and hours and hours.  Actually sometimes it feels like the food just sits there.  And yes, your stomach will start hurting along w/ the feeling like it's all going to come up, but it doesn't.  Not a pretty sight in a public place.

A part of me is glad I had the surgery.  I was having coughing fits all day long and even in the night.  Regardless to what I ate or didn't eat or what medicines I took.  Now, I cough occasionally or when some of the lupus symtpoms flare up.  

[SCjason]

Hello everyone,

Well, I had my Nissen on May 14th so I am almost 2 weeks out.  The surgery went really well but I did develop a high fever of 104.7 while I was in the hospital recovering.  Other than that, everything has gone fine, just trying to adjust to this new diet.  Question for anyone else who has had the Nissen, I have completely lost my gag reflex.  Prior to having the Nissen, I couldn't even brush the back of my tongue without gagging, now, I can literally stick my finger down the back of my throat without the slightest gag.  I had my first follow up visit today and I told my surgeon that, but he didn't seem concerned?  He said that he wished he didn't have a gag reflex.  I have been doing research and I haven't seen anywhere where a loss of gag reflex is a possible side effect of a Nissen.  Initially I though, well, if you can't vomit than you probably can't gag either, but I am not seeing that correlation anywhere.

Any input?

[Smiley2000]

Hi there Karajo  

Sorry for only replying on your post now.  It is also nice for me to "meet" someone that are still in the same recovery stage that I am.

I never loved eating as it always made me feel sick and I have a problem with my Cricopharengeal muscle and food get stuck in my throat... so I am more of a chocolate person :)

but all jokes aside:  I have never had issues with bowels/IBS, but since my surgery I have developed typical IBS symptoms:  constipation, tummy cramps and aches.  But I am okay with that and now just take "Norvacol" once per week (normally, preventative on Mondays) and I must say that it has improved.

I only received the "Crico muscle" diagnoses in April and still battling with that, even though I now take 15mg Diazapam and 50mg Amilothrypteline nocturnally, I battle with hoarse voice and throat troubles...

I have a very complicated Medical History... but I feel better than I have in the past 10 years!

I am still losing wait as I can not eat a lot and I am borderline underweight at the moment (1,67m and weigh 55kg).  I just try to eat healthy and have lost my cravings for chocolates!  but I have not had any Nexium since my surgery.

I consulted an Otolaryngologist who diagnosed the throat issue as being "Cricopharengeal spasms and muscle thickening".  I have been battling with ENT symptoms for more than 3 years and that is why I have agreed to the Nissen Fundo.  Going for Botillium injections (yip, Botox) but will be done under general anaestesia and after 3 treatments might have to go for Mayotomy - and this is all related to years of GERD that were not diagnosed and treated.  As said before, I am also just in my 30's but now sit with long segment Barret's and lifelong surveillance for cancer signs.

With ENT symptoms, post Nissen Fundo, I would advice you to also go and see an ENT or even better a "Otolaryngologist" who specializes in GERD damage.

All the best, and let me know how you are doing and if you have any more questions or just wanna talk :)

[Smiley2000]

Hi there,

I am now 3 months + post-op after Nissen Fundo.  I have noticed a difference in the way that I used to "burp" - now it just feel like bubbles coming up and I don't have control of it.  I have to stick my finger almost down my throat as my Epiglottis becomes very swollen during the day (long story, but I have a thickened muscle due to GERD damage) and I don't gagg or feel like vomiting or anything.  I am so used to doing it now as I have had these ENT symptoms for more than 3 years now.

I don't think you should be conserned about the loss of the "gagg" reflex.  You are very early in the recovery period and a lot of the symptoms that you have now will also get better and disappear with time.  I can remember that I had those terrible shoulder-pains for up to 2 months post-op, every time that I either had something gassy to drink or even just ate to quicly.  That has now completely disappeared and I don't have any dietary restrictions and can even drink Coffee for the first time in years :)

All in time, but it will improve.  All the best and keep us updated on your recovery :)

[karajo]

How did they dx the Cricopharengeal muscle problem?  

I have also lost a lot of weight, but that seems to have slowed down somewhat.  I've lost a little over 20 lbs.  I almost weigh what you weigh now.  The symptoms seem a little better, but I still can't eat very much.  And I still get nauseous at times.  I looked back on my post a month ago and can see some improvements.  They did a swallow test, but thought everything looked OK.  

Thank you for your reply.

[Smiley2000]

Hi there,

I have had these ENT symptoms now for 3+years and eventually I ended up seeing an Otolaryncologist who did a Fleuro-scope test (pipe through the nose to the UES) and he could see that the muscle is thickened and damaged from GERD.  I had my test done in Adelaide.

I have read that the Crico muscle is also called the UES?  you can read into that.  Very interesting and complicated.  Treatment is the muscle relaxants and then Botillium injections via Endoscopic instruments.

Hope the info helped you.