Just had my follow up with the Surgeon

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!

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.

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

 

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

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

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

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