Just had my follow up with the Surgeon

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

Stockster
Regular Member


Date Joined Dec 2012
Total Posts : 54
   Posted 11/20/2013 11:29 PM (GMT -6)   
Hi Everyone,

I thought I would post a message after finally getting my results from the surgeon. It turns out that the results of my pH, Motility and Bernstein test were positive for definite reflux, and I was told that I would be a candidate for the surgery if I wanted it....

That was it! I was expecting to go in and have a definite decision made for me by the doctor. But instead he just said "if you are keeping the GERD under control with PPI's, then why would you get the surgery? I told him that the PPI's are still working, but not as well as they did in the beginning, and that I was concerned about taking the meds for the rest of my life, especially being so young. He then said that 'if you are concerned about Barretts, or cancer, that both the meds and the surgery are equally as effective at fixing the problem.

I told him about having a lot of the typical symptoms of Gerd, but he said why not just stay on the PPI's... get scoped every three years and go from there.

Is that typical?? I don't know... I was expecting him to say.... Yes, definitley.... if you are in pain or discomfort from the GERD, then Surgery is the right thing to consider.

Argh!!

Anyway, just wondering what to do..... Maybe another scope with my GI will make my decision....

Thanks for reading and have a good night!

Trump
Regular Member


Date Joined Nov 2013
Total Posts : 71
   Posted 11/21/2013 5:04 PM (GMT -6)   
I have gerds and hiatal hernia and dr didn't offer the surgery up either. I honestly don't even know if I would want it anyway. But he left it up to you. Research the surgery the benefits and the risks and weigh out your options of getting it or not getting it. Follow your instincts, trust your body. Only we know what our bodies are going through. Most of the times we experience way more than what they test are showing them and that's all they are going by. Go by how you know you are feeling... Good Luck

RobUK74
Regular Member


Date Joined Nov 2013
Total Posts : 24
   Posted 11/21/2013 5:44 PM (GMT -6)   
Hi Stockster - my surgeon who I rate very highly wanted to ensure that I made the decision not him. He wanted me to be clear as to the risks associated with having the operation, and equally with staying on PPI's - my only regret is not having found this site sooner.

My advice would be this - as I don't know how young you are. I have suffered with gerd for more than 10 years - to start with I just thought it was occasional heartburn and indigestion which I controlled with Pepcid AC or Zantac, but I noticed that these would control less and less so went to see my GP. That was when I was introduced to PPIs which to start off controlled them. When I noticed blood in my stools my GP referred me and that was when my private health clicked in. Luckily a great work colleague of mine recommended a great gastroenterologist who performed a number of colonoscopies and endoscopies, that was when we discussed my faulty valve and hiatus hernia. We increased meds until I was on Nexium and Zantac at very high doses. These would sometimes work and sometimes would not. The final endoscopy was for me the line in the sand I was literally red raw throughout my whole Oesophagus and had Barrett's Oesophagus. We both agreed I should be referred onto the surgeon.

The first meeting was to discuss findings so far and medications then a return 4 weeks later to discuss how things were going - we tried changes in diet, weight loss, cutting out alcohol etc, but to no avail. At this second meeting he discussed what surgery was and the complications and we agreed to do a barium swallow and pH/menometry. All came back with positive results and high levels of acid.

I met with surgeon again to discuss the findings and he was quite frank about the results, and gave me the opportunity to ask any questions I had. I pushed quite hard and his view was that at 39 I was very young to have such a chronic condition and recommended surgery, but that I had to make the final decision.

I opted to have surgery, and am now in week 4 of recovery. There is a lot that the surgeons don't tell you about post op care and recovery times, mainly as you will see on here everyone has different rates of healing and recovery time.

I hope this helps, feel free to get in contact again if I can help further.

Stockster
Regular Member


Date Joined Dec 2012
Total Posts : 54
   Posted 11/21/2013 7:50 PM (GMT -6)   
Thanks for the advise.

RobUK74, I am too fairly young, only 38, and most of the people on the site have heard my ups and downs of this disorder.

I have had Thyroid cancer in the past and know that I have to be my own advocate through a process like this. I am on 40 - 80 mgs of Nexium a day with at least 1 or 2 X150 of Zantec, and sometimes on gaviscon to ease the bad times. I completely understand your current journey.

I have also had all the tests multiple times and from an Endoscopy perspective, I appear to have no esophagitis....to date. Although the test come back confirming GERD, I don't like the idea of feeling like crap most days. To be honest, even though I'm an athletic guy, and in decent shape, I find that I am not as active due to the constant regurgitation that I experience, from water/liquid, to food, to the constant chest pain and often raspy and raw throat.. not to mention the times when the pain radiates to both my arms and legs. I have become moderatly lazy since this all came on as working out doesn't feel good when you always feel regurgitation on excursion.

Ultimately, the question remains..... to do the surgery, or not!? How are you doing with your recovery? Are you happy you did it? I know the thought of barretts for you is a concern that you will have to monitor, but if you could turn the watch back, would you have elected to take the surgery?

I'm torn on the topic as I know it would help me, provided the surgery is a success, but can I manage with PPI's for life and a high percentage of miserable days ahead? I don't know.

If I was 50+ it wouldn't be a second thought, but there is a lot of living left and I worry about getting the Flu, ruining the wrap, bad surgery and this is what scares me.

The great thing is that sooooo many people on this site are positive about their experiences and their journeys, it motivates me to get the surgery. (i know you must now be in the toughest phase of recovery, so if you're not feeling the best at this point, you need to remember that you;re through the worst of it.. As you've read, it is supposed to get better from this point on :).

Thanks for both your replies.








I can go on and on

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 11/21/2013 10:05 PM (GMT -6)   
Hi Stockster,
Glad you got your results, and discussed them with your doctor.  It is so difficult to have the tests and wait around for that follow-up appointment!
 
I had the surgery in February 2009.  Honestly, I had no other options (although my GI doc told me I could have surgery or stay on meds...pretty much what yours did).  My lungs were in horrible condition, and my PCP and asthma docs were at wits end...I had been sick for 6+ years and there was no controlling asthma. 
 
The GI doc didn't have any confidence that the surgery would help, as my reflux levels were quite low.  Thankfully, the surgery has worked extremely well, and my lungs are healthy again.
 
I had no idea if the surgery would work, but I had to rule out reflux, so I went forward with it, and happily, in about two and a half months, I started to see positive results.
 
I am extremely satisfied with my surgical results, and live my life normally and happily.  That said, I certainly wouldn't have gone through it with the reflux levels I had, if it weren't for my lung involvement.  Yes, I'd get bad heartburn at times, but it wasn't like I was regurgitating food and acid into my mouth on a nightly basis.
 
GI docs seem very hesitant to push people toward surgery, as the recovery is challenging, and the results aren't guaranteed.  The PPIs are so effective that there isn't as much need for most people to get a Nissen, as the meds do the trick. 
 
I know you've talked to "Cindy123" who lives in Toronto, and she was a case where a GI doc/surgeon encouraged surgery.  She'd had only silent reflux, and could have done fine on PPIs but was fearful, I assume, because of what she was told about the affects of reflux on the esophagus.  She struggled greatly with the recovery, because she hadn't been suffering prior to the surgery, so the recovery was much more difficult to deal with.  She could have gone on with just PPIs and have done just fine.
 
If you're not having horrible reflux symptoms, why not take the "wait and see" approach?  I am an advocate for the surgery...it can improve quality of life greatly  for people who need it. Still, it's not a surgery to take lightly.  Even though you can go back to living completely normally after healing, there are always some quirky changes you'll have to deal with. 
 
Often people fear using PPIs long-term, but GI docs (and my PCP) are very comfortable with their long-term use.  There is absolutely no guarantee that you'll never have to take PPIs after having the surgery (though at lower levels), so I personally don't think avoiding the medication is enough reason to get the surgery, though I know it's the reason some opt for surgery.
 
I know I haven't answered your question.  I think you're the only one who knows how much your quality of life is being reduced due to reflux.  That would be the biggest reason to have the surgery.  If you're on peak dose of PPI and you aren't getting good results, it can very negatively affect your quality of life.  Then it's time for surgery.
 
Good luck with your decision!  Keep us posted...
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

RobUK74
Regular Member


Date Joined Nov 2013
Total Posts : 24
   Posted 11/22/2013 2:39 AM (GMT -6)   
Hi Stockster

So it sounds as if we were both in similar territory I had to take Nexium 40mg 3 times a day and Zantac ranitidine 300mg each night and that would sometimes do the trick and sometimes not. My consultant stooped me from exercising due to my hernia, and I am not allowed to go back to lifting weights for at least a year!

Am I glad I have had the surgery? Absolutely! I can honestly say whilst it is still early days (week 4 of recovery) I've not had one instance of reflux and I do feel a new man. The only thing I will say is that here in the UK the surgeons undercook the healing process and are a little skint on information - I wish I had found this amazing site earlier.

So in terms of recovery I am happy to share further details of my experience if it helps, and would certainly recommend the surgeon and hospital I had my surgery in. It is amazing the differences in terms of speed of diet and return to work. In the UK I have been told not to return to work until after Christmas, am entering the purée stage of the recovery diet, and my appetite is still fairly poor.

My personal view is that if you are happy to continue to take tablets and it controls your GERD fully then leave as is and keep reviewing annually - if they are not, then I would really consider surgery but make sure that the surgeon knows what they are doing, and come highly rated - I did a lot research on my surgeon and I am glad I did!

Mcedge
Regular Member


Date Joined Aug 2013
Total Posts : 292
   Posted 11/22/2013 3:16 AM (GMT -6)   
Hi RobUk74

I hope you don't mind me asking you a few questions.

First let me say that I'm also in the Uk and I had my fundoplication 10 days ago. I had a hernia repair also.

I've got over the actual surgery fine but I do feel that I have acid reflux. I've started to get pain in the chest ,warmth in the throat and an acidy mouth.

I know it's early days and others on the forum say that it could all be due to swelling. I was wondering if you had such problem or as yours been straight forward and did your symptoms disappear after the op?

I know others say that their symptoms went straightaway but I feel that mine are still the same as they were before surgery.

My surgeon assured me the day after my op that I don't have acid reflux.

Where did you have your surgery? I had mine in Cambridge and the surgeon specialises in hiatus hernia repairs so I do believe he was a good surgeon but I guess even they have failures.!

I haven't done anything to jeopardise the wrap and I've followed the liquid / sloppy diet. I really can't understand why I should be feeling like this.

I hope you don't mind me asking you these questions but it's nice to talk to others who are in the UK and have been through the same thing.

Thanks

RobUK74
Regular Member


Date Joined Nov 2013
Total Posts : 24
   Posted 11/22/2013 12:42 PM (GMT -6)   
Hi McEdge

Thanks for reaching out - good to know there are fellow Brits out there - just wish I had found this site sooner as there is such great information and insight from our friends across the pond!

I'm sorry to hear that you still feel that you have reflux - and I do remember my consultant telling me that the acid should drop away immediately after but that in some cases it can take longer - and this sounds like you.

Whilst you were in hospital did you have a post op barium swallow? I had mine two days after, and it was very reassuring a) to hear the operation was a complete success and b) to see with my own eyes the amazing work that had been done! If not, it might be worth you asking for this to be done, to see that everything is as it should be.

I had mine done in London and I have replied to Rod61 (as I believe you have) as to the surgeons and specialists there - they were simply superb and excellent at putting everything simply and in plain English.

My surgeon was keen for me to be on a liquid diet for at least two weeks (which I have done) and in week three to move to a pureed diet with liquid still the main part and then this week going 100% puree and I have to say so far so good - although the biggest thing I have noticed is how little I want to eat and how little appetite I have, along with a gurgling tummy which seems to be something that dies down gradually.

I hope I have given you some comfort, and if there is anything else, do get back in touch!

Best wishes


Rob

Mcedge
Regular Member


Date Joined Aug 2013
Total Posts : 292
   Posted 11/22/2013 4:10 PM (GMT -6)   
Hi Rob (RobUK74)

Thanks for your reply.

I have an appointment with my surgeon on Tuesday to discuss my problems. He e-mailed me today and again reassured me that it's early days and these things usually settle down.

I didn't have a post operative barium swallow maybe that would be good to see. I did get photos that were taken during the procedure. They were really interesting I got one of the actual hole in the hiatus and I was really surprised how big it was. The other photos showed the actual stitches in the diaphragm to make the hiatus smaller and one of the completed wrap.

Do you get pain and tightness in the chest? Im not sure what the pains are. I used to get them before surgery which I put down to either acid reflux or the hernia but as these have supposedly been dealt with I can't understand what they can be.

I get the gurgling tummy also but like you said this eventually goes.

Again thanks for your help

Maria

RobUK74
Regular Member


Date Joined Nov 2013
Total Posts : 24
   Posted 11/22/2013 4:15 PM (GMT -6)   
Hi Maria

I did get pains in the chest but these went quite quickly and was due to air that is blown into your stomach during the procedure and disperses during deflation into your chest area - although this should have gone by now.

I think the sensible thing is to discuss with your consultant when you see him on Tuesday and get him to talk through what the pain is - I had painkillers for the first two weeks, a daily injection of blood thinners and had to wear surgical stockings to prevent blood clots for four weeks.

Have you had any of this? And is this private or NHS?

Good luck for Tuesday, keep in touch!

Mcedge
Regular Member


Date Joined Aug 2013
Total Posts : 292
   Posted 11/22/2013 8:50 PM (GMT -6)   
Hi Rob

I took painkillers for the about 3 days after the surgery. I did get pain from the gas but that was in the shoulders which disappeared after about 5 days. I didn't have blood thinners but I did have the surgical stockings which I wore only in the hospital.

I only started with this condition in April of this year and of course when my symptoms first started I was with the NHS. So I had CT scan, endoscopy and some biopsies with them but when they found nothing the consultant said "nothing found come back and see me in December". Well I knew that something was wrong so I started to research myself and made arrangements with the gut clinic for tests. Which of course proved that I had acid reflux when I had a high demeester score. I than asked my GP for a barium swallow because I started to suspect that all of this was caused by a hernia. In the meantime I had been in touch with a surgeon in Cambridge who I saw privately and he agreed to the surgery. The barium swallow on the day didn't show a hernia but on the morning of the surgery I was told by the surgeon that the hernia had been found after they had analysed the images. So I had some things done on the NHS but I had some tests and and the surgery done privately.

I had to go private because basically the NHS consultant had given up looking what was wrong with me but I knew that something was wrong which I eventually found out what it was.

I'm assuming that you went private also ?

I will discuss with the surgeon my on going pains and the thought that I may still have acid reflux. Although in his e-mail he didn't seem to concerned. I'm hoping that my problems are due to internal swelling and will eventually go when the swelling goes down.

I guess that in a few weeks if I feel that I still have reflux I could have a 24 hour impedance test to find out for sure what's going on but for now I'm hoping that it all settles down like the surgeon and others on the forum believe it will. I don't know what I'll do if it doesn't or if the tests prove it's still acid reflux.

I'll let you know what happens on Tuesday although I'm sure the surgeon will suggest giving it more time.

Take care

Maria

FlaCracker
Regular Member


Date Joined Oct 2013
Total Posts : 235
   Posted 11/23/2013 5:41 AM (GMT -6)   
Stockster,
 
I would take the meds and watch how everything goes. Go on a GERD diet too. At 38 years of age, you were smart enough to watch for any potential problems. I didn't and have Barrett's although multiple GI doctors have told me it reversed. The last scope I had showed EE in the throat area. I had teeth erosion and acid burns on my gums. That was caught by my dentist. My reflux came and went for years. I was ignorant to the whole thing. My condition is inherited. My now deceased father, aunt, and cousin all suffered from heartburn. My cousin sleeps in a chair every night.
 
I do know of someone at 35 years of age getting the Nissen. The gentleman had to get it because he had 1/3 of his stomach (paraesophageal) in his chest. He did a watch and see for a number of years. Meds did not work and he was getting sicker. So if you don't have a hernia and just GERD; I would follow the Gastro dr's orders. Good for you for being proactive.
 
FC 

Stockster
Regular Member


Date Joined Dec 2012
Total Posts : 54
   Posted 11/24/2013 10:12 PM (GMT -6)   
Thanks for you note FC

I agree with your recommendation in the wait and see approach. I do have a small hernia, but it is only a small sliding one. I was told it was really small, but I'm sure it is also adding to the occasional severe episodes I get.

I will push for annual scopes and biopsies, but I have a feeling I will be only allowed to do it every 2 years

Thanks again to all who responded
New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, September 20, 2018 6:00 PM (GMT -6)
There are a total of 3,005,237 posts in 329,204 threads.
View Active Threads


Who's Online
This forum has 161763 registered members. Please welcome our newest member, Dnoey.
308 Guest(s), 13 Registered Member(s) are currently online.  Details
Chask, SoMuchFun, JayMot, bobmars, 81GyGuy, Michael_T, cashlessclay, Bohemond, Anitas, jrpsf, Mamatomypeas, fiddlecanoe, Ed C. (Old67)