Facing Surgery and scared

Dear BMcD; take a breath!, you're with friends now. You are in the same position I was in over a year ago; some of the dx was different, but the need for the surgery was the same and all I had heard, and read lead me to think that I was heading for a huge mistake.

What you will hear from everyone here is honest, good advice and great shoulders to lean on; listen to everyone and take this information to heart. While each of us is different, our journeys are still very much the same.

First, this is no small surgery and just because they can do it laproscopically, doesn't diminish the magnitude of the surgery. It is a rough recovery, simpler it seems for younger people, but older ones like me can get through it fine too.

The MOST important thing is to find the best surgeon you can; this cannot and should not be a general surgeon, but a thoracic, or specialized surgeon who has done hundreds of these surgeries. Do not be afraid to ask the surgeon this question, how many of these have you performed? The surgeon, or your GI, should be scheduling several specialized tests as well, including, but not limited to: barium swallow, impedance manometry, 24 hr ph or a Bravo; all of these, while not the most pleasant to go through, provide tremendous amounts of information to the surgeon and your Dr. If they don't schedule these or don't require these, ask them why!

Most excellent surgeons have a set of protocols that they want their patients to meet, including weight restrictions, the healthier the weight the better the outcome. For me, the surgery made a tremendous difference in my quality of life; my biggest problem was pulmonary and the constant aspirating of acid was damaging my lungs and, in fact has caused permanent damage to my lungs. I also had severe erosions, a small hole in my esophagus, the LES of course had failed, my vocal chords, damaged, sinus problems, constant hoarseness, throat clearing, heartburn, regurgitation..all the normal stuff, but very little chest pain.

The surgery changed all of these things. Is it perfect, no, but it's the best thing we have to combat it; all of this, however is contingent upon having the best surgeon you can possibly get, and if that means traveling for that person, so be it.

You will hear from the others and we will help you through the process and the recovery. Your first and best step was finding us; not meaning to sound all this and that, but what I had read before and on different forums, scared me! People here are supportive and real and will stand by you!

So welcome to the group!
Janice

Hi BMcD,
I can totally identify with your experience Googling the Nissen surgery. It's definitely frightening. There are so many hysterical and negative posts that I resisted the surgery for four years. Finally, the GERD related uncontrolled asthma got too much for me to handle. The high doses of steroids made my skin thin, and caused adrenal insufficiency. I got sick of not being able to breathe, as I coughed and wheezed all day and night.

I also found this forum to be the most supportive, realistic, informational, and reassuring one on the the internet. After having some more tests, being continuously encouraged by my family and asthma doctors, I decided I needed to give the surgery a chance. I also did not have the severe GERD symptoms that others her had. My LES was weak but not open, so my symptoms were mainly lung related.

Long story short, I had the surgery February 27th and am SO glad I did. I'll copy and paste my recovery posts here, so you can read through them and get an idea of what I experienced in the recovery. The recovery was much easier than I ever thought it would be.
Relax. The surgery isn't perfect, but is a real blessing to those of us who needed it.
Read through my posts to get a feel for what the recovery would be like.
Good luck! Hang around here and you will get lots of support and encouragement.
Take care,
Denise

Here are the posts:

Nissen Surgery Failures…my thoughts
https://www.healingwell.com/community/default.aspx?f=45&m=1407854

Pre-op
https://www.healingwell.com/community/default.aspx?f=45&m=1392590

Days 1 and 2
https://www.healingwell.com/community/default.aspx?f=45&m=1400327

Day 3
https://www.healingwell.com/community/default.aspx?f=45&m=1401655

Day 4
https://www.healingwell.com/community/default.aspx?f=45&m=1402680

Day 5
https://www.healingwell.com/community/default.aspx?f=45&m=1403765

Day 6
https://www.healingwell.com/community/default.aspx?f=45&m=1404600

Days 9-13
https://www.healingwell.com/community/default.aspx?f=45&m=1411473

19 Days
https://www.healingwell.com/community/default.aspx?f=45&m=1417831

HI Ben,

Your condition sounds much like mine was.  I had been told in my 20's that I may have a hernia due to the pain you are talking about. The pain is scary since it is in the middle of your chest.  I continued on and had 3 kids -big babies and long long labors so I guess it got much worse.  Not many symptoms still.  At 59 I had an emergency gallbladder surgery and the scan showed a big hernia.  Still not many symptoms.  My family physician and a GI doctor just recommended aciphex.  A couple of other doctors along the way, told me it could be serious even without symptoms.  I got the run-around and started getting a little paranoid especially after goggling it.  YIPES!  I consulted with a couple of doctors on my own and really respected their opinions.  I ended up having the Nissen 3 weeks ago and so far it seems to be healing normally.  I too had a huge opening in the diaphragm and there is the danger of stomach being pinched off and causing an emergency surgery.  One surgeon told me I needed it but only wanted to do it open chest.  The doctor I went with is very experienced with the laparoscopic technique and was very confident that it could be corrected that way.  I have never been so apprehensive about anything.  But I think the procedure is being perfected.  I am in very good health in all other ways and not overweight.  I think that sometimes the hernia is associated with obesity and makes everything associated with it more complex. I think it is a good idea to consult with more than one doctor and check around for referrals.  THis is also time consuming and you have to be pushy and your own advocate.  I am a very mild mannered person, but have found that with health care you have to keep calling and asking for timely appointments.  I always ask my doctors what they would do if it were them or their family member.  Some don't take it well,but it is an honest question and we all deserve an honest answer.  My son is just finishing his medical residency and I always try to pass on to him how people feel and to remember how important it is to keep that in the forefront of his mind.  My surgeon did lots of tests to be sure the surgery would work well for me:endoscopy, motility, xrays etc. Just keep getting information so you can make an informed decision.  This forum is very good and you will get honest information and caring support here.Good luck as you make your decisions.  I hope this forum helps you to feel that you are not alone in this. 

Mariacarole

Mine wasn't that bad Joy, it must be operator experience!! I know others have had a rough go if it, and others, not so bad...let's hope Ben has a good operator!!
Janice

I have a couple of things to say about the manometry test. I was also terrified. I heard from this board about how much everyone hated it. So the 1st time I went, all I did was choke, cry and could not finish the test. I talked to my doctor about it, asked if there was another way to find out how tight to do the wrap with out this test. He said no not really and it was very important.
My main thing that I was scared of with the whole surgery was that I was going to wake up and have a problem swallowing and not being able to burp.

So I bucked up and thought about all of the pain that my mom goes through daily(she has cancer) and told myself, if you want the surgeon to be able to be precise then go back and do the test.
So I went in, stood up for the whole test(made it easier for me) once they got past my throat area.....I just kept on thinking how I wasnted him to be able to have these measurements so he could do a great job. And guess what I sailed thorough it with flying colors. I am a firm beleiver that you need to think about something else while its going on to get through it...
Long story short when I woke up after the surgery I had no problems swallowing nor burping. I am eating alot of different foods and I am on day 17.
I am still very sore, but I am getting better every day. I have not had any problems with acid reflux and was told that i don't need all of those meds anymore. I had it real bad before surgery. it was to the point I couldn't hardly eat anything without getting super puffy stomach, acid reflux so bad that no meds worked and every night I would wake up with it coming up my throat. So don't be afraid just go for it. In the long run it will help us all live a longer more painless life.

Hi All,
I'd also like to speak up about the manometry. It's definitely mind over matter. It's not that bad. If you build it up, and worry about it, and expect it to be horrible, "Sure enough!" that's what you'll experience. The hardest thing for me was not swallowing in between the water swallows they ask of you. It's such a reflex, that you want to keep swallowing, and you can't, because they need clean measures of you swallowing reflex.

The most important thing is to do relaxation breathing while you're having the procedure. Visualize a well-loved location, and breathe very slowly. Concentrate on your breathing. Usually there's a great nurse, who is skilled at talking you through the procedure, and that's very helpful.

Don't worry about it, BMcD, (or anyone else Googling this thread). It's an important test. It doesn't last all that long, and there are a lot worse things you could have to be going through.
Good luck!
Denise

I am not the least bit nervous about this test. I have so many more things on my mind right now; pre-cancer (barrets), Nissen possible long term side effects, the constant thought of if I over do it I could cause the wrap to fail. This last one really bothers me as I like to be an active athletic person and don't want to have to second guess every activity I do for the rest of my life to make sure it does not cause my wrap to come undone. Its weird how you can live your life without a health concern in the world, then boom, overnight your forced to make decisions that are either: pick bad or pick worse.

Heather, have you discussed the Esophyx procedure with your doctor? From everything I've read and heard it's the lesser of two evils.

Joy

BMcD-
As far as damaging the wrap goes, once it is healed there aren't any restrictions. You can do anything you could before the surgery. You just have to give it 6 to 8 weeks to heal then all is well. I too saw all the horror stories about this surgery over 3 years ago. I couldn't find anyone who had anything good to say about it, besides the doctors. I went for it anyway and am so glad I did. Even witht he difficulties I had the first time I would do it again. Now that I have had it redone by someone who really knows how this surgey should be done evrything is perfect again. No issues swallowing, I can burp, still can't vomit( found out the hard way) but I have anti nausea meds for that. Not taking PPIs anymore and eating what I want when I want is great.

Take care,
Bill

Hi Heather,
I don't know what your symptoms are, but if doctors are encouraging you towards surgery, there must be a reason. I know it's a scary decision, and shouldn't be done for the wrong reasons, but if you have been told it is in your best interest, you should give it some serious thought. (I'm sure you have.)

I was scared away from the surgery for four years, and wish I'd done it at least a year or two earlier. There has been permanent damage done to my body as a result of the steroids I had to take to be able to breathe. The reflux (perhaps even bile reflux) was causing my lungs to be constantly inflamed.

It's not a perfect surgery, and yes there are permanent changes, but it has been a lifesaver for many of us here. You might consider getting additional opinions, and be sure to search out your surgeon very, very carefully. He/she should have a great deal of experience with the lap Nissen procedure, specifically, and have done many of them. It's a very specific surgery, and just because a surgeon is skilled at other surgeries doesn't mean he/she would be successful with this one.

This is a great place to air your fears and concerns.
We're here to support you as you try to make the right decision for you.
Take care,
Denise

Hi Ben,
As Bill said, you don't have to worry about your wrap, once it's completely healed. Your surgeon will release with no restrictions, when you have your final visit. Rick, a longtime member here, was out riding his bike miles and miles just two weeks after his surgery. He recently climbed Mount Washington--the highest peak in the NE! If you post a new thread asking about exercise/workout limitations after surgery, hopefully he'll see your post, and respond to you.

Good luck with your manometry and your decision!
Denise

HiBen, and welcome. You sound like me, Please go read my thread. I was shakin in my boots but Bill, Denise and janice assisted me in  not peeing on myself. It isnt as bad as the internet states. It was very frightening  to me to say the least.I drove my hubby freaken nuts  and my best frend!!! Now i can say I am 100 percent better. Please insure to speak to ur surgeons other patients ,my dr did the same with me. I felt so much anxiety until my recovery.I had the iatial, chest pains but never had heartburn.I did think i was havin heart attacks. I am so much better

good luck

Bea