To do Nissen surgery or not....that is the question?!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

asthmareflux
New Member


Date Joined Aug 2012
Total Posts : 7
   Posted 8/14/2012 10:32 AM (GMT -6)   
Hello all!  I'm so excited to have finally found a forum that seems to have a lot of members with the experiences I'm having.  Hopefully not all of the scary experiences on the surgery I've read about either!
 
I'll give you a little bit of past history.  I've dealt with upset stomach / nausea most of life.  When I was younger they had me cut out caffeine which helped....then as I got older they moved to Nexium, endoscopy showed some irritation of my esophagus but not much......a couple more years and I had my gallbladder removed......up to today where I'm on Dexilant and still feeling a little naseau but definitely feel it if I miss the Dexilant for the day.  In the meantime, I began having bronchitis several years ago and over the years I would get more and more episodes of it.  I finally went to see a pulmonologist a few years ago and he began running a battery of tests.  I am currently on Advair 500 2x a day and Singulair for that.  I'm supposed to take Albuterol if wheezing but honestly, I was so used to the wheezing, I didn't even know that what I was doing when I breathe was not normal!  If I breathe out hard then you hear a wheeze....if I go to the dr. they always hear wheezing...and most of the time I end up with bronchitis a few times a year, last year it was almost every month but it has been better this year.  At the beginning of this year we did a bronchoscopy which showed nothing really, I've had allergy tests which didn't show enough to be causing this issue, and a few other tests.  My pulmonologist finally recommended me to a gastro dr. earlier this year b/c he said it was all he could think of that could be causing my asthma medicine to not control my asthma.  I met with them, had the endoscopy...same result, some reflux, and I also had the 24 hour ph test (miserable by the way :) )  Anyway, it showed I definitely had reflux quite a bit.  The first one put me on Dexilant but that hadn't helped so I went to a second one, he recommended surgery.  Fast forward to today and I'm questioning surgery. 
 
I met with the surgeon yesterday, a very highly recommended surgeon, and he did think it would help me but couldn't guarantee it.  I also know all of the scarey side affects I've read which freak me out.  I asked if losing weight would help, he DID NOT mention himself.  He said it could and I could try it if I want.  Honestly though, I'm not that overweight, like 10 lbs would put me under the 25 bmi so I'm really not that heavy and frankly I don't want to diet the rest of my life....plus I don't think that will do it anyway b/c I was sick when I was thinner too, only nausea wasn't as bad. 
 
I'm just having trouble deciding if the side affects / recovery are worth it if there's a chance it won't fix anything anyway?!  I don't have any episodes of chest burning, VERY few episodes of tasting the reflux in my throat.  Mine is all nausea and the asthma issues.
 
I would love it if anyone has some ideas, I know you're not doctors but experience means a lot to me!

asthmareflux
New Member


Date Joined Aug 2012
Total Posts : 7
   Posted 8/14/2012 10:35 AM (GMT -6)   
Sorry couple more things..... part of my drive to do is
1. Get rid of taking $300 worth of medicine a month!
2. Stop coughing like I smoke 2 packs a day
3. Stop getting bronchitis, although that has decreased
4. Lessen risk of esophageal cancer
5. Lessen nausea
 
Also I'm 34 so have a lot of years ahead of me, hopefully!

bowecho
Regular Member


Date Joined Nov 2011
Total Posts : 146
   Posted 8/14/2012 11:05 AM (GMT -6)   
Welcome to the forum! We've had a lot of questions about the Nissen in the past week. I recommend reading back through past recent threads with Nissen in the title. They are full of all kinds of information.

As with any surgery, there is a chance (very small) of side effects, complications or even failures. Those that do have complications tend to share their experiences online more often, so you can definitely get a very skewed idea of the success rate. Luckily, you will find many stories here of success with the Nissen. If you are properly screened and your surgeon is experienced, chances of success are very high.

I had my Nissen in November of 2011, and it gave me a new lease on life. I'm 32 myself, so I had the same feeling that I have a lot of years ahead. The Nissen was a huge success, and because of that I get to enjoy each and every one of those years, pain free.

One of our members, Denise (Dencha), had a Nissen for her asthma symptoms. She was very happy with the results. She also wrote an excellent journal of her recovery that I probably read a dozen times during my own recovery. I recommend you look it over. I don't have the link handy, but she may be able to provide it.

If you have any questions about the procedure or recovery, just let us know. We've been through it all, and would be happy to answer anything.
Learn lots. Don't judge. Laugh for no reason. Be nice. Seek happiness.

Baza
Veteran Member


Date Joined Jan 2011
Total Posts : 513
   Posted 8/14/2012 12:35 PM (GMT -6)   
Hi asthmareflux,im one of the people who have had the surgery and have had problems and it hasnt helped me.What you said in your post about the surgeon saying he thinks he can help you but couldnt guarantee it is exactly what my surgeon said to me before the op.I at that time was so desperate to fix my reflux i didnt really listen to that or anyone infact,my GP advised me not to get the surgery.Please take your time and think very carefully about surgery and if you decide to go for it please get all the pre op tests done thoroughly and most of all make sure your surgeon has carried out lots of these procedures.im happy to answer any questions you might have. thanks Barry

asthmareflux
New Member


Date Joined Aug 2012
Total Posts : 7
   Posted 8/14/2012 1:43 PM (GMT -6)   
Thank you both for your responses.... I definitely want to hear the good and the bad.  Baza - do you mind me asking what issues you've had and how long ago it was done?  My GP is actually advising me to do it.

Baza
Veteran Member


Date Joined Jan 2011
Total Posts : 513
   Posted 8/14/2012 2:04 PM (GMT -6)   
Hi,i had my surgery in early March of this year,since the surgery i had nausea everyday,burping,palpitations and generally unwell.ten weeks after the op the hiatal part of the surgery was thought to be too tight so surgeon undone a couple of stitches in there and said i should be fine.Since that i still am ill,with nausea,food getting stuck,liquids backing up my throat,im back on ppis and motility drugs,ive had a dilation of the wrap and scheduled for another.Not a great story,ive become a recluse from the op because i feel so unwell and the worst thing is the surgeon doesnt seem to understand or want to know,he said hes running out of options.Im looking into getting another opinion at the moment.I think i have some other problem that has been overlooked ie motility problem.Hope this doesnt put you off as the majority of people who get the surgery see some improvement in their condition,i actually know three people who had it done and where totally cured.Barry

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 8/14/2012 8:38 PM (GMT -6)   
Hi asthmareflux,
I had a similar situation to yours, however my lungs were far worse than yours are now.  That was a progressive deterioration over probably 5 years.  At one point in that progression, I'm sure I was like you, but things just went downhill as time went on.
 
My lungs were very unhealthy, and my PCP pushed very hard for surgery.  My GI doc dragged his feet for 5 years while my asthma doc and PCP tried to keep me breathing. GI doctors don't really understand how a very little amount of reflux can affect lung health.
 
500mcg Advair is a very high dose.  Before my surgery, I was on 240mcg 4 puffs twice a day (along with Serevent and Singular) and my lungs were so bad that I was taking nebulizer treatments with Xopenex (like Albuterol) several times a day.
 
Post surgery, I am on 115/21 Advair, 2 puffs twice a day, and my lungs are great.  I do have allergies and asthma unrelated to reflux.  Before my surgery, my doctors couldn't control my asthma even with prednosone, inhaled steroids, etc...I was on such high doses of steroids that I now have permanent problems (thin skin that tears and bruises extremely easily).  I just wish I'd had the courage to push my GI doc to refer me to a surgeon much earlier.  I could have avoided so much illness and discomfort, and I could bump into something without requiring steri strips and bandaids.  My skin has no protective ability.
 
Nobody can promise that surgery will solve your problems.  Noone promised me, either. That's why my GI doc was so hesitant to send me to a surgeon.  He was afraid I'd have the surgery without any improvement to my lungs.  My PCP and asthma doctors disagreed. They wanted me to have the surgery.  Many tests and many years, along with many letters from my PCP, finally led to my GI doc offering a surgical consult.
 
I know that there are no guarantees.  I know I many at some point need a redo surgery.  Still, for some of us, there is no choice.  It's a risk we must take.  I, for one, am glad I took the risk.  The reward has been great.  I just wish I hadn't waited so long.
 
Good luck with your decision!
Denise
Here is the link to my early recovery journal:

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.”

asthmareflux
New Member


Date Joined Aug 2012
Total Posts : 7
   Posted 8/16/2012 2:29 PM (GMT -6)   
Dencha- thank you so much for that response.  It's funny, I actually had a dr. with the asthma doctor yesterday.  It was almost like he wasn't so for it at first and then he listened to me, on meds now mind you, and still sounded bad.  He then almost had a change of heart and said you know we can't guarantee it b/c no one will and if they willl they're a quack.
 
However, nothing else is positive for you...no allergies...no bronchoscopy issues, etc.etc.  But we do have proof you have reflux so we have to believe this should help you.  He said they've tried everything and nothing is making it better.
 
I think I'm leaning towards doing this just wondering if I want to do now since it's almost my kids' birthdays (little ones) and holidays!

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 8/16/2012 5:10 PM (GMT -6)   
Hi asthmareflux,
At some point, when your lungs are affected by reflux, the surgery is the only answer.  Believe me, my PCP and asthma doctors were tearing their hair out trying to keep me breathing. I coughed constantly. I remember my daughter in law, who is a PA kept telling me that I had to do something...that I shouldn't be coughing that much.  My lungs were making tons of mucous, and it had to be coughed out.  It was not good. 
 
At one point, when I got gastritis from an antibiotic, my reflux got so bad that I was hospitalized for a week, on IV steroids.  This, when I was on top dose PPI and top dose inhaled steroids.  Even prednosone didn't do a bit of good.
 
My PCP told me that my situation was life-threatening, and refered me to a thorasic surgeon himself.  The surgeon did tests and on the recommendation of my PCP, whom he respected, said I was a good candidate for surgery.
 
I took the test results back to my GI doc, and he did the PH monitor again.  My reflux levels were a little higher (mind you, my reflux was never horrible...but it doesn't take much to get lungs going).  He told me I could continue treating the reflux with medication (which wasn't working) or he could refer me to a surgery, which he did.
 
I agree with your doctor who said that nobody can guarantee anything.  The reason they've ruled out all those other things with testing is to narrow down the probability that it's reflux that is causing your problems.  With me, it wasn't that easy.  I do have asthma and allergies, which definitely muddied the waters.
 
My surgeon told me that "If the lung issues were caused by reflux, the surgery [would] help me.  That, of course was the big "IF" that kept the GI doc from refering me.  However, I was at the end of my rope.  I couldn't continue the way I was.
 
I understand your desire to choose the best time to be recovering after surgery.  Mine was toward the end of February, which is a good time..after the holidays, but before summer!
 
Good luck with your decision!
This is a great place to be as you make that decision.  There are lots of post-Nissen members who can help you work thorugh things.
Take care,
Denise
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, June 19, 2018 4:19 PM (GMT -6)
There are a total of 2,973,359 posts in 326,083 threads.
View Active Threads


Who's Online
This forum has 160959 registered members. Please welcome our newest member, RBL.
419 Guest(s), 8 Registered Member(s) are currently online.  Details
LifeCointosses, Michael_T, Glascis, Serenity Now, C_G_K, OriolCarol, MacroMan, Jack & Diane