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Posted 5/20/2015 6:28 AM (GMT 0)
Hello, firstly, this sight is amazing. I've been reading up on the nissen procedure here and it is all very informative. You all seem to support each other too.

I have had a bad time with wrong diagnosis (peptic ulcer) and treatment, then had my gall bladder out and recently a gastroscopy (not pleasant). I have been diagnosed with a LES, 6cm hiatal hernia, motility disorder & oesophagitis. This all happened with the last 12 months.

I have now just been to see a surgeon who has recommended the nissen fundoplication as I'm not coping very well with the esomeprazole. I have a barium swallow booked in just over a weeks time and and I am waiting for the manometry app. I am so scared of more unpleasant procedures and the op itself but I feel so poorly.

I wondered how long it takes from tests to surgery. Is it weeks or months?

Also is the manometry as awful as the gastroscopy?

Post Edited (Janeway71) : 8/28/2015 10:06:29 AM (GMT-6)

Posted 5/20/2015 4:05 PM (GMT 0)
I'm in the US and it took 4 months from initial tentative diagnosis until the test were complete and surgery done and that seems pretty standard. I've followed a few Brits who went through the NHS and the timeline seemed to hold for them too but that may vary by region. I'm sure some will respond to your post soon. The tests provide important information your surgeon will need and none is nearly as bad as continuing to feel as poorly as you do.
I'm no medical person but I think a 6cm hernia would be considered a moderate size.
I found the waiting time to be very difficult. If I could go back and have a "do-over", I would try very hard to worry less. Be informed of course, but keep stepping forward. Good luck!
Peg
Posted 5/23/2015 12:46 AM (GMT 0)
Janeway - If you have been feeling lousy for some time now, you have so much to look forward to in feeling better. Getting better requires going from where you are, through some serious stuff, and then back into the sunshine to heal.

The testing is crucial to evaluating your body's ability to handle surgery successfully. Keep in mind how interesting all these medical things are, that you are going through.

Look forward to your date with your Team in the OR. Do everything you can to further promote your wellness before surgery. (I lost 15 pounds pre-surgery) And then let the process flow. Your Surgical Team has a huge amount of vested interest in your successful outcome, your safety being the first priority.

Yes the testing is peculiar, but you're a lot younger than me, and I went through it all just fine. Do you have someone to ferry you back and forth to your various appts? Not a good idea to go alone.... Some of the tests will have you hurrying home to your place of comfort. But that's ok!

Your healing time will be filled with easy days and difficult days. Just remember the 'brass ring' that is the prize of much better health in the years right around the corner. I am in week 12 now, and feeling a bit better every day. I understand this phase takes quite a while, so be mentally prepared to take it easy and be good to yourself for some time.

We will all be here cheering you on; please post along the way and let us know how it's going. Just think; you have friends all over the World now!

Be positive and good things will happen!

Best, Ingrid (Color me Fresh Greens!)
Posted 5/23/2015 8:58 AM (GMT 0)
Hi Jane,
I am in the UK and I had my toupet fundoplication in March. My manometry tests were done in the previous November - it takes about 6-8 weeks for the results to come through- but it does depend on your NHS trust as to how quickly things proceed. Manometry tests are not as bad as an endoscopy - the catheter can be a little uncomfortable when you eat dry foods - such as bread - but it's only for 24 hours. It is well worth going through if you get good results!
Any questions - I will try to help!
Hope all goes well!
Posted 5/23/2015 9:00 AM (GMT 0)
Sorry Paula! :-)
Just read the end of your post! - I didn't have a barium swallow. 6cm hernia is classed as 'large'. Mine was only 3cm - and that was enough problems for me! (3cm classed as small - but over 5 classed as large)
Posted 5/24/2015 8:27 PM (GMT 0)
Hey, Janeway71 - I was thinking about you expressing apprehension towards your tests. I did not experience the manometry, so I don't know anything about that. I wanted to mention that every one of the medical people who performed the testing was very experienced with fearful clients, and they were all kind and reassuring, to a person.

I had a barium swallow; it didn't taste too bad. Strange texture. I wasn't able to take on as much of it as they wanted; due to having only a 1/3 stomach capacity. It took me four days to be rid of the product 'out the other end' but was ok. That test took about 2 1/2 hours at the diagnostic lab.

Then to the local Hospital for Doppler (to check leg veins for clotting) and Breathing tests. Easy peasy.

The Stress Test was a half-day project. My Surgeon ordered a Nuclear Perfusion, instead of the usual. There were two young fellows who were specialists in the field, and both Paramedic trained. They were very good at explaining the process, very kind and supportive. That test was necessary to determine if my heart was strong enough to survive the surgery. It was all easy except for the longest 7 minutes of my life, which came almost at the end of the process. You may be given the conventional treadmill test, or maybe the other one. Maybe neither!

I hope you can conquer your fright. It only serves to make you more uncomfortable and probably makes your Darling more worried, too. You CAN do these things, and will probably wonder afterwards why you were so worried!

Being 20# (?) overweight gives you something to focus on. Try to lose some of that before you go for surgery. You'll be glad you did! (I lost 15#)

I can't relate to what size a 6cm hernia looks like. I would just say NO hernia is a good hernia. Getting it fixed is a good idea! If they will do that when the fix other things related. My hernia was ridiculous. By the time I got in the OR 'out like a light', ALL my stomach was intra-thoracic; all up behind and above my heart. What a mess! I am so glad I got it fixed; now I anticipate enjoying the next 20-25 years like a 'normal' person would. BTW, I'm 66, so you can see why YOU should get yourself fixed up. Then you too can enjoy your coming years (at least 45!) with your ever-supportive Spouse. Let him help you!

Keep us posted; we're here for you, Paula!

Best, Ingrid
Posted 5/24/2015 8:44 PM (GMT 0)
Hi Paula,
You don't stay in hospital for the manometry test - once the catheter is in place they will send you out and tell you to have as normal day as you can - but they ask you to eat and drink trigger foods - so they can see your reflux at it's worst. They will give you a digital box to record the results. It's not as bad as it sounds.
I was off 3 weeks after my operation - and that was prefect for me. It will depend on your job as to how long you are off. As for your weight - I wouldn't worry - you will lose weight after the operation anyway! I lost a stone!
Don't worry too much - many of us have done this - and we're all here to tell the tale :-)
Posted 5/25/2015 2:19 PM (GMT 0)
Hi Paula,

I had a manometry completed before my surgery and it is done to measure the motility of the esophagus. The procedure lasted less than 15 minutes. The worse part of the test was the apprehension before the test. The test was not nearly as bad as I expected.

I did not have the 24-hour test which I believe is used to measure acid reflux. You will want to find out exactly which test you are having done.

A barium swallow is totally painless and I did not mind the taste of the barium.

-Tim
Posted 5/25/2015 8:10 PM (GMT 0)
Hi Paula,

My surgery was on March 3rd--been almost 12 weeks. I had a large hernia with a large portion of my stomach above my diaphragm. It had bothered me for a number of years so I took my time and visited 3 surgeons before settling. I was in the emergency room in October with swallowing issues and the surgery was 5 months later. I am in the US and have good insurance (allowing me to visit 3 surgeons).

I had a toupet fundoplication instead of a NF. The toupet is a 270 degree wrap versus the 360 degree wrap of the NF. My surgeon's preference for a large hernia is a toupet. I am glad I had the partial wrap because of potential motility issues. Your manometry test will provide information about the motility of your esophagus. I have read that a partial fundoplication is a better option for someone with poor motility of the esophagus.

My recovery has been similar to what others have posted. The first 3 weeks or so I had lots of shoulder pain after I ate. My surgeon suggested this was referred pain from the diaphragm and would eventually pass. For the most part, it has pretty much passed. I find I still need to eat small meals and chew everything up almost to a liquid. I lost about 16 pounds but have been holding steady the last few weeks. I was back at work 2 weeks after surgery but could have used one more week.

Currently, I have small burps but cannot do large burps/belches and I still have some occasional chest pain and trapped air (I eat too much in one sitting too many times). Others have indicated that most of the recovery takes about 6 months---getting back to more normal eating, etc...

I am no longer on PPIs or other medications and I am glad I had the surgery. The recovery does take some time but the post-surgery pain, for me, was not nearly as bad as expected. Good luck with your tests and let me know if I can answer other questions. Be your own advocate and ask your doctor(s) questions,

-Tim
Posted 5/26/2015 2:07 AM (GMT 0)
Hey, Miss Paula - See what a lot of support you have! You GO, Girl!
Posted 5/29/2015 5:59 PM (GMT 0)
Hi Paula you have been getting great information on this site. I also live in the Midlands and had my 2nd operation ( 1st one 14 years ago) on 27th January You are on that road now, working your way through some important tests until your operation is scheduled. Can I ask what hospital you are attending for the tests?
Posted 5/29/2015 6:59 PM (GMT 0)
Hi I also had my op at Derby hospital under Mr Leeder although the manometry was done at Nottingham university hospital because they have a high resolution camera there. Its a small world and a great hospital. Let me know if I can answer any questions I will. All the best Rita
Posted 5/29/2015 7:03 PM (GMT 0)
Hi Paula,

One test down and one to go? Do you have the manometry scheduled yet?

-Tim
Posted 5/31/2015 4:47 PM (GMT 0)
Hi Paula,

Hopefully sharing a little of my own story may support you.

I had a fundoplication back in 2002 (I think!). The battery tests prior to the surgery were unpleasant but necessary.

Last year I thought I felt some of the old symptoms returning and I was required to go through the same tests again. Things have changed over the last decade:

The gastroscopy was unpleasant. At one time the patient could be thoroughly sedated and have his/her throat numbed. Recent NICE guidelines (in the UK) indicate that either a minor sedation OR throat numbing is permissible. This improves the safety but increases the discomfort. That said, I think much of the discomfort experienced is directly attributable to the skill of the doctor wielding the endoscope.

The barium swallow was a walk in the park. As you'll now know, the experience is not at all unpleasant and I was fortunate to have an excellent doctor and nurses all of whom demonstrated empathy, humanity and a fabulous sense of humour.

The manometry was quite unpleasant. Whilst I'd not wish to go through it again, I wouldn't fret nearly so much if it became necessary. My first manometry took a long time. They used the technology that was available: an adult probe with a single pressure sensor. This necessitated moving the probe up and down after multiple sips of water which prompted severe retching and vomiting. Having to repeat this experience filled me with absolute dread and I very nearly cancelled the appointment. On this occasion, a child's probe was used which, crucially, had pressure sensors along its length. This made the test significantly easier and more comfortable. Interestingly, the results of my manometry were very poor, much more to do with my nervousness I think than with the functioning of my oesophagus which the barium swallow had shown to be fine.

The 24 hr testing was bearable. The probe is just a nuisance and I counted down the hours to the time of removal.

As you'll be aware, the tests are necessary to determine the value and parameters of surgery. It's much better to furnish the surgeon with all possible data than to proceed to surgery without this information.

Good luck with the tests and let me know if i can be of any assistance.
Posted 6/11/2015 4:38 PM (GMT 0)
Hi, Paula - Did they let you see the pictures of your stomach after the swallow? (You should always ask to see; it will help you understand your inner workings) It shows how your stomach is positioned, where your small bowel joins (mine was in the middle of my lower abdomen; not where it belongs) and makes any abnormalities very clear to view. So it sounds like there was nothing unusual there.

The gastroscopy shows a view from the inside of your throat, esophogus, and stomach. Much different from the Swallow test. They can also take biopsies and photos at this point. You will probably be fully sedated for this test. A bit of a sore throat and grogginess from sedation are all you will probably experience. Easy peasy!

I'm here in the US, so your experience might be slightly different. You are travelling down the right Road!
Keep us posted!

Fresh Greens
Posted 6/12/2015 1:40 AM (GMT 0)
Oh, Paula, sweetie.... I am so sorry you are in such turmoil. Sucks, doesn't it!? You didn't like seeing the swallow pictures? I found them interesting. GP's don't know everything.... that's why they're GPs! The human body is a complicated piece of equipment. And not everyone is built exactly alike, to add to the confusion.

Don't worry about the manometry. Just take it in stride - puke all over the technician if you have to! You warned them......

You're getting closer to the end of testing and on to surgery. Keep your eye on the prize, as it were. Many of us have been down branching lanes from where you are, and we are all alive to talk about it.

You have a huge cheer team out here, and we are all checking up on you regularly. Be strong and proceed.

Love ya - Ingrid
Posted 6/12/2015 3:32 AM (GMT 0)
Paula,
Each diagnostic test focuses on a separate part of the digestive process and, taken together, they give your surgeon and doctors valuable information about how to treat you. Every person is different and it's really sort of interesting to see how the pieces go togetherness in each separate case. My barium swallow test results indicated I had no reflux, even though I had been treated for gerd for years. Then the manometry showed my swallow to be on the weak side and that turned out to be significant since the surgeon later decided to do a partial fundo instead of a full one to allow for my limited strength swallowing. The gastrometry/EGD was pretty easy. They put me out during the procedure and woke me up 20 minutes later no worse for wear. That test showed the amount of damage to the tissue, and allowed the doctor to get biopsies of any damaged areas. It also allowed the doctor to sees the unique lengths and contours of my upper system, including a hiatal hernia that was he source of my problems. That was also helpful to the surgeon later because it gave him a picture of the "lay of the land" before surgery ever started.
I think your doctor may be saying that the barium swallow tells him reflux may not be about culprit but the other tests may reveal the cause of your problems and ways to treat you.
It takes a while to get the tests done and it can be very difficult to be patient. I know it was a hard time for me. But just keep moving ahead. You really are making progress!
Peg
Posted 7/2/2015 7:22 PM (GMT 0)
Hi Paula,
I have been on that NHS pathway - it is complicated! If you have to have tests that have to be done at the surgeons request, they can 'stop the clock' as it involves other hospital departments, also on the 18 weeks waiting time - and re-start it again when the tests are done. Unfortunately - the tests have to be done - and each new test can potentially take up to 18 weeks. From my first GP appointment to surgery was about a year! 24hr ph and manometry test results take at least 8 weeks to come through after the test - just so you are aware. I was told at Christmas I was on the waiting list for surgery - took another 3 months before I actually had the surgery. It seems like an eternity - but it is worth it in the end - at least from my point of view anyhow. If you wanted a quicker route you could go private - but I was advised against this - as this is a complex operation - and if it goes wrong the NHS wont fix it. I had a very good surgeon- I had a complication - but I got through - and have had no anti-reflux meds for 5 months now!
Posted 7/3/2015 11:43 AM (GMT 0)
Hi Paula. Are you going via the NHS or privately? If its privately it'll be a matter of weeks waiting but a longer wait via NHS. I had my Nissen done privately and it all happened very quickly.

The manmetry is not too bad, it's a very very fine tube that goes up your nose and down into your stomach, my throat was slightly sore the next day but not too bad.

The barium swallow is easy, you just swallow a white liquid and they take xrays of it. At my recent swallow I had to swallow a mini marsh mallow to see if food gets blocked, which is part of my current problem.

The actual operation is fine. Its keyhole surgery. I had a little discomfort straight after the op and I went home the next day. I felt fine after a few days. You have to "eat" very soft foods like porridge, soup, icecream for a few weeks while the body heals.

I'm having my Nissen reversed at the end of July because it's caused me more trouble than I had before the op. My case is not the norm so don't worry about your op. The consultant made the decision to reverse the procedure in December and I'm having the op on 29th July so the waiting wasn't too long. I'm having it done at the Gloucester hospital.

Post Edited (Cariad12000) : 7/3/2015 5:51:33 AM (GMT-6)

Posted 7/3/2015 11:55 AM (GMT 0)

Sweetie UK said...
Hi Paula,
operation - and if it goes wrong the NHS wont fix it. I had a very good surgeon- I had a complication - but I got through - and have had no anti-reflux meds for 5 months now!

Hi Sweetie UK,
I had my Nissen done privately about 6 years ago. It hasn't worked for me but I'm having it reversed through the NHS
Posted 7/3/2015 9:09 PM (GMT 0)
Hi Paula,
I didn't have any tubes anywhere except the blood pressure band and a morphine drip which you self administered by pressing a button when needed. It's done in such a way you can't overdose yourself. I used it that night of my op but didn't need it the next day.

I've had several endoscopes including attempts to stretch the wrap(last August) and a barium swallow with bolus (mini marshmallow)(October). I also kept a diary of when food got stuck and what I'd eaten. That was enlightening. I thought I was being sick about once a week but the diary showed it was every few days, sometimes several times a day!
The specialist saw me in December and said the op was likely to take place in April but its booked for 3 weeks time. I have the pre-op tests in 2 weeks time.

I no longer have private insurance so am going with NHS. So far the hospital have been very good. been
Posted 7/5/2015 9:30 PM (GMT 0)
Hi, Paula - I see you are still chugging along down the NHS path. I need to google that system, so I can understand why on earth things are moving so very slowly!

I guess the saying 'whatever doesn't kill you makes you stronger' must be the National Slogan for the UK Health System?

Sounds like you are still a very long way out from a surgery date. I (for one) surely hope you don't land in the surgery process till after Christmas. Because you won't feel like cooking or socializing or holiday shopping or carolling or any of that fun Christmas stuff; you will be internalizing on your healing, as well you should be!

I'm in Week 17, and opted out for no July 4th merriment yesterday. Just didn't feel up to it! You are quite a bit younger than me, but as you have read many times over in the Forum, healing can take quite a while. No speeding up the process at will; it just takes time!

Regarding recovery in hospital; I had 3 IV's, oxygen, a naso-gastric tube, multiple contact pads on my abs and tummy, massage booties and a Foley catheter by the time they wheeled me into ICU. And I was in PACU for two hours unconscious. (Not sure why they kept me 'asleep' for so long...)

24 hours in ICU, then off for a 'swallow x-ray' then all the equipment came off, I got dressed, hailed a wheel-chair, and out of there!

Fresh Greens
Posted 7/6/2015 9:19 PM (GMT 0)
Hi Paula,
Just thought I'd give you an idea of my NHS surgery experience. I was originally meant to have the surgery done in day surgery. That can work if you go in first thing - but it's not so do-able if it's an afternoon slot. I had a complication which meant staying the night, but was out by lunch time the next day. I was on a paracetamol drip for the first few hours topped up with codeine tablets which were in tablet form. I had no tubes or drains. It really depends on your surgeon, your hospital and what wrap they decide to give you (depending on your results), also how you are post-op. Also there's no guarantee you will have follow up post surgery. I found out at 8 weeks post op that my health authority don't do follow up,but I had no issues to speak of. I was told if I had they would have given me a check over. It may be totally irrelevant as there's no 2 health authorities the same!
Posted 7/7/2015 10:48 AM (GMT 0)
Hi Paula

I have had symptoms for 10 years and finally found out I had a hernia two weeks ago when I paid £2250 for a private endoscopy and colonoscopy. I was told I could have surgery but need to go through the testing as well. I am petrified of three things, 1. coming off the meds for the tests. I have been on them for 10 years and suffer if I forget one dose (like I did last night); 2. that I will throw up during the tests as I am emetophobic, and 3. that the tests will show that I shouldn't have the surgery and that I have to live like this for the rest of my life
Posted 7/7/2015 1:02 PM (GMT 0)
jennielouises:

You just have to let go of your fear and have the testing done. You could be a candidate for surgery, but you won't know until they have all of the results. I didn't have any issues with the manometry, the test does not take very long and the nurses were very understanding and said not to worry about getting sick, it happens. As far as going off the meds, unfortunately it's something that you can't get around.

Good Luck, Sharon
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