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Scleroderma & Raynaud's UK (SRUK)
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manometry

Has anyone had this procedure? I've just been given an appointment but the description sounded so horrendous that I can't face it and have cancelled. I have none of the symptoms it's supposed to investigate – my consultant wanted to find out if I have silent reflux and if that caused the (irreversible) damage to my oesophagus. But I don't want to take the drugs he proposed (PPIs) (and he doesn't want to prescribe them either) to cure the reflux (which I don't have!) so I don't see the point in all this investigation.

Anyone out there had manometry? Was it really awful?? Any other thoughts re its usefulness?

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I wish I could say it’s easy, but it is uncomfortable . I’ve had to do them several times. They are necessary unfortunately. The best thing I can say is try to relax. Breath through it. They will have you tilt your head so the tube passes more easy. And also they spray some numbing stuff. It could work great for you. My biggest advice is, if they say you need surgery and recommend a nissen funduplication, RUN!

Worst decision of my life was to agree to that surgery.

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I'm really sorry to hear that you think a fundoplication was so bad. What happened with it if you don't mind me asking? I hope you feel better soon. X

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The surgery left me unable to vomit... ever! Imagine having the stomach flu, food poisoning etc. Instead of being able to let it it, I instead dry heave for about 20 minutes straight. And the pressure and pain is horrible. I end up breaking blood vessels in my eyes, and my body begins to shake and get weak. This also happens when I get built up gas. I went back to the surgeon who told me this had nothing to do with the surgery however it took very little investigating to see that it is a common side effect! I have had to deal with this for years now and it can be debilitating. Imagine being at work and having on of these attacks happen. You can be heard retching for that long in the public bathroom. UGH. I have had mine slip once and had to get it redone. Had hoped the second one would relieve this since it was a newer procedure but nope. I had one specialist say the surgery damages my Vargas nerve which again is an occurrence with this surgery

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I knew about the inability to vomit or burp but feel really sorry for you having such painful effects from it. It's the lived experience that makes it real. Take care. I'll say a prayer for you. Xx

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It sounds like your consultant is concerned the mobility of your oesophagus isn’t good - are you having problems swallowing or with your digestion? He must have cause to be concerned. It might’ve been better to discuss before you cancelled. No test is especially fun - personally I’d be more concerned about procedures I’d have to face if there were a problem and I’d not looked into it.

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What procedures are you thinking of?

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Tube down the nose into stomach, eating bits of bread (can’t eat bread; was quite ill afterwards 😅) little scribbly lines showing the oesophageal function.

Wasn’t half as bad as the 24 hrs with a tube in I had straight afterwards. Honestly, in the scheme of things it doesn’t last forever & you get useful info.

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My experience having this wasn’t too awful, but the tech doing it was vvvvv kind & patient, and i was much younger so at a relatively earlier stage of disease severity. I hope things go smoothly & gently for you. Rptake care & good luck. XOXO

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I don't have any problems at all swallowing (apart from see below!!) or with my digestion. But a barium swallow showed up damage to my oesophagus and he wants to know whether it's caused by "silent reflux". He didn't mention any treatment other than proton pump inhibitors which he didn't want to prescribe anyway, so I don't see the point. I know I shouldn't really have cancelled the appt but I can't even swallow a paracetamol without a lot of fuss (anxiety not physical difficulty) and just the idea of something in my throat for 24 hours makes me feel panicky. And having a long journey on a crowded bus home with a tube coming out of my nose! I still have to have a gasteroscopy but at least for that I can opt for sedation.

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I'm embarrassed about wimping out now but I've had so many procedures recently – endless CT and MRI scans, barium swallow, breath test (for SIBO), colonoscopy, ultrasounds, x-rays, echocardiogram... I'm a bit fed up. Unlike some of you poor folk, with systemic scleroderma I don't have many symptoms; I'm certainly not suffering or in pain (apart from the Raynauds) and I just feel horribly over-medicalised. I've got to the point where I just want them to LEAVE ME ALONE. What an old grump!

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I had it done. Wasn't fun. Dr thinking of doing another one. I was very uncomfortable. Didn't hurt. Lot of swallowing to get the thing down your throat. Mine came back ok which confused me because I have esophageal dismotility caused from Scleroderma. I have very bad reflux. Idk but if you don't have reflux why do the test unless he's checking for something else. I think mine was a waste of time.

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This is all very interesting. It sounds like an issue of 'high patient burden' (time-consuming and uncomfortable) with uncertain clinical benefit.

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