Facing Surgery and scared

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BMcD
New Member


Date Joined Aug 2009
Total Posts : 18
   Posted 8/14/2009 2:20 PM (GMT -6)   

Hi all,

 

My name is Ben and I found this forum and would like some opinions.

 

about 3 months ago I experienced a sharp pain in my chest after eating,  it even caused cold sweats and everything.  It subsided after a few minutes and I thought nothing else about it.  A month or so went by of minor pains about three times a week in the same area.  about 2 months ago I had another severe pain and made an appointment with my GP.  She said it could be GERD and prescribed 1 protonix/day.  I had never experienced this pain until now so I was thinking cardio issues.  She sent me to a cardiologist just to make sure.  Between that visit and the cardiologist I continued to have pains although they seemed less frequent.  He also believed it was GERD, prescribed an addition protonix/day putting me to two a day and thought I needed an edoscipy to watch for Barrets, a disease he said he had as well.  With two a day the pain is even less severe and frequent.  I went to get the endoscopy and they found a hiatel hernia, a gaping EGJ, and Barrets.  Needless to say I was bummed.  Biopsy came back negative for cancer which was good, and no dysplasia which is even better, but Barrets is still bad news and I certainly don’t want it getting worse.

 

My next stop was a consult with a surgeon.  He told me he recommended the Nissen procedure.  Sounded fine until I got on the internet!  Honestly until I found this site I was scared to death.  Still am actually.  I have a great life, very little pain, a wonderful family, and a great career.  The side effects from Nissen could turn me into a person who has trouble breathing, swallowing, can belch or vomit, has IBS, and God knows what else.  The idea of living with all of that for the rest of my life brings me to tears.

 

The doc thinks I should go through with it and from what I read, small, non dysplasia Barrets after surgery has been seen to not get any worse in many cases, and even improve in some.  I’m just not sure what to do.  I would do anything to keep myself healthy to be around as long as possible for my Son and Wife and Esophageal cancer can be a death sentence if my Barrets gets to that point.

 

I just don’t know what to do.  Apparently I have an esophageal sphincter that wont close and this is the only thing I can do to have the best chance at fixing that.  It just makes me angry that I don’t have any of the painful symptoms everyone else has, so there is nothing that is going to make me feel better from getting this surgery, only things that could potentially make my standard of living go way down.  Anyway, I guess I just wanted to begin to tell my story a bit to some people who understand.  Thanks for any thoughts or comments you might have.

Post Edited (BMcD) : 8/14/2009 1:28:34 PM (GMT-6)


LdyJane
Veteran Member


Date Joined Jun 2008
Total Posts : 903
   Posted 8/14/2009 3:22 PM (GMT -6)   
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

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/14/2009 6:11 PM (GMT -6)   
Welcome....
I, too, am facing surgery. Before I decided to go through with my surgery I was terrified. I had heard horror stories and did not want to endure all the suffering I had heard. Except for occasional burn and a chronic cough, I didn't think it was as bad as the doctor was saying. Talking with these wonderful people here has helped me to face my fears and realize they make wonderful cheerleaders.:))
I managed to find a wonderful doctor who is experienced in the newest procedure for our problem. It's called EsophyX TIF. Instead of incisions, they go down your throat with a special stapler and staple the top of your stomach around your LES. You can find it on the web. There is a strict criterea for being able to have the surgery. Plus it's best your surgeon must have done at least 100 of them. I wish you the best in your decision and stick around.


Joy

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7185
   Posted 8/14/2009 7:27 PM (GMT -6)   
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
http://www.healingwell.com/community/default.aspx?f=45&m=1407854

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

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

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

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

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

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

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

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

BMcD
New Member


Date Joined Aug 2009
Total Posts : 18
   Posted 8/14/2009 7:42 PM (GMT -6)   
He did order one more test, the impedance manometry, which I have scheduled on the 23rd.  The surgeon that I went to is a general surgeon, but he assured me he has been doing these since the mid 90's and does between 20-30/year.  He also offered to let me talk to a couple of patients of his who went through the surgery.  One is a doctor he operated on and thought the experience from a medical doctors perspective first hand might be helpful.  I have no reason to believe he is not fully capable of doing this as well as anyone, although when I go in for the final consult I will also ask for a name for a second opinion.  I just have a feeling that the second opinion will be the same as the first, as if my goal is to reduce the risk of Baretts from progressing, I do not really know of another option.

mariacarole
Regular Member


Date Joined Aug 2009
Total Posts : 35
   Posted 8/14/2009 7:56 PM (GMT -6)   
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

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/14/2009 10:04 PM (GMT -6)   
OOOOO.... Manometry...... (((((((shiver))))))))
The most terrifying experience of my life. I'd thought I was going to choke to death before it was all over.
I hope yours goes better.

Joy

LdyJane
Veteran Member


Date Joined Jun 2008
Total Posts : 903
   Posted 8/14/2009 10:13 PM (GMT -6)   
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

griffdawg
Regular Member


Date Joined May 2009
Total Posts : 247
   Posted 8/14/2009 10:29 PM (GMT -6)   
i survived mine even though i nearly choked to death... yay! lol
relax it takes time and trial and tests and patience, which we've all been thru... im on my way for surgery as soon as the stupid surgoen fixes the date he messed up.. take care and we're all here for u for anything!
griff ^_^

surfergirl
Regular Member


Date Joined Jul 2009
Total Posts : 28
   Posted 8/14/2009 11:47 PM (GMT -6)   
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.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/15/2009 11:30 AM (GMT -6)   
When I had the test I didn't know anything about it. What it was for or what they were going to do to me. That maybe the reason I fought to so much and had a choking experience. After they had me lay down I felt better but I was still scared. I had to go to my happy place to distract myself from the experience.

Joy

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7185
   Posted 8/15/2009 12:00 PM (GMT -6)   
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

LdyJane
Veteran Member


Date Joined Jun 2008
Total Posts : 903
   Posted 8/15/2009 12:38 PM (GMT -6)   
I must have been extremely lucky; the first time I had it, the nurse told me everything she as going to do, what it was all about and what to expect and the importance of relaxing. I happen to be very good at biofeedback, so once I get past the one spot, I'm fully calm and no problem.

She taught me to keep my chin down and how to breathe through things and it makes all the difference in the world. Did it still bring tears to my eyes, sure, but it really wasn't awful...I've been through a lot worse, that's for sure! Denise has given you great tips (like always!) read through them and keep them in mind and you should do well.
Janice

BMcD
New Member


Date Joined Aug 2009
Total Posts : 18
   Posted 8/15/2009 4:01 PM (GMT -6)   
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.

hehe1nw
New Member


Date Joined Jun 2009
Total Posts : 5
   Posted 8/15/2009 5:15 PM (GMT -6)   
BMcD ~ You and I have some things in common. I too am contemplating the surgery. I have Barret's and reflux. The Protonix I have been taking (2 twice a day) seems in my opinion to have stopped working although the Dr told me the medicine is for the acid, not for the reflux. As I research and visit with the Drs, I am feeling many of the same things you are as far as the outcome. I haven't come to grips with the fact that my body will be changed permanently, as it can't be undone. So, what to do. I have another appt with my GI Dr on Monday to ask some more questions.
I am questioning myself. Is it really THAT bad that I need surgery? I don't have much pain just swallowing all the time to try to get the food to stay down, like a lump in my throat. I already have a bit of dysphagia (trouble swallowing) I have already put this off for 2 years and I don't know if there is a right and a wrong answer. Everyone is diffferent. We just have to educate ourselves and do the research and then decide i guess. I had to stop googling the procedure because of all the horror stories. It wasn't helping me at all.
Heather


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/15/2009 5:35 PM (GMT -6)   
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

mariacarole
Regular Member


Date Joined Aug 2009
Total Posts : 35
   Posted 8/15/2009 7:37 PM (GMT -6)   
Hi All, I was just telling a friend about this test today. I see that so many of you did what I did. I kept pretending I was at the beach and breathing through the gagging impulse because I knew that if I started gagging, it would be hard to stop. It is not a painful test, just yucky. Just "breathe deeply" and like the others said, "Go to your Happy Place" Good advice. Good luck, it is one more step toward healing.
Mariacarole

opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 8/15/2009 9:34 PM (GMT -6)   
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

hehe1nw
New Member


Date Joined Jun 2009
Total Posts : 5
   Posted 8/15/2009 9:50 PM (GMT -6)   
Joy ~ I haven't talked to my doc about it. My insurance considers it to be "experimental".
Heather


dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7185
   Posted 8/16/2009 7:27 AM (GMT -6)   
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

BMcD
New Member


Date Joined Aug 2009
Total Posts : 18
   Posted 8/16/2009 7:30 AM (GMT -6)   
Bill,

Why did you need to have your wrap redone?

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7185
   Posted 8/16/2009 7:31 AM (GMT -6)   
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

BMcD
New Member


Date Joined Aug 2009
Total Posts : 18
   Posted 8/16/2009 9:24 AM (GMT -6)   
I dont know if you have seen this, but this is a great video of the procedure.  The doctor answers a ton of questions and I think shows that if you have a good surgeon, your chances of being "normal" again are greatly improved.  He address Barrets a couple times also which made me feel better about possibly going through with this.
 
 
 
Also interesting he uses a 56 French Bougie where as the surgeon I have been interviewing uses a 60.  Grossly simplifying, wider (higher #) means looser I think?

beareilly
Veteran Member


Date Joined Mar 2009
Total Posts : 553
   Posted 8/16/2009 7:04 PM (GMT -6)   

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


dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7185
   Posted 8/16/2009 8:56 PM (GMT -6)   
Hi Ben,
I've heard of surgeons who use a 56 bougie for men, and a 54 for women. I'm a tall woman, (5'9"), and my surgeon used a 56 for my surgery, which is quite loose. I can burp, and don't know about vomiting, but don't expect to be able to do that. I've got anti nausea meds should I get a stomach bug.

I'd say a 60 bougie would be a very loose wrap. (too loose? don't know).
Thanks for sharing the link!
Take care,
Denise
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