Oesophageal Physiology Tests: Oesophageal Manometry & PH Recording

On Tuesday, I travelled to London for Oesophageal Physiology tests. This consisted of an Oesophageal Manometry & a PH recording. The results of these tests, along with two others that I’m still waiting for the dates of, will be used to determine the reason for my dysphagia (problems swallowing), likely related to my EDS.

I took the train down to London for my Oesophageal Physiology tests. Unfortunately this supposedly simple journey was not so simple. When I arrived at the train station, I was told that the train was running 10 minutes late. This immediately put me on edge. Even if the train was on time, I would only have 30 minutes to get from the train station to the hospital once we reached London. As it happened, we arrived into London 8 minutes before my appointment time. I like to arrive with plenty of time, but unfortunately I wasn’t able to get a peak train. The cost of a peak train ticket was £60 as opposed to the off-peak £25.

Things didn’t get any better when I arrived into the London train station. The assistance that I had booked didn’t show up. I was lucky that some of my fellow passengers offered to help me off the train. I managed to get to the hospital only 5 minutes late. However, the receptionist didn’t tell the doctor doing the test that I had arrived. So 15 minutes after my appointment time, the doctor came out & asked the receptionist if I’d turned up yet.

Oesophageal Physiology Tests: Oesophageal Manometry

The Oesophageal Manometry was the first of the two tests I had done. The leaflet that had come with my appointment said that I would need to eat some bread during the test. It informed me that if dietary restrictions did not permit this, to bring a suitable alternative. Before the test started, I made the doctor aware that I was allergic to wheat. I also let him know that I had brought my own, wheat-free bread for the test.

The doctor started to calibrate the machine ready for the test. Unfortunately, this all want a little haywire. The machine was leaking air so wouldn’t calibrate. Then, all of a sudden, the air pressure caused a tube on the machine to shoot off. It was touch & go whether the test would be able to go ahead. This was rather stressful, as it isn’t easy for me to get to London. So the thought of having to go back was not appealing. Luckily, a nurse came in to help the doctor fix the machine. She changed two of the machine’s parts & we were back in business.

The Oesophageal Manometry part of the Oesophageal Physiology tests, involved having a tube inserted into my nose & down to the bottom of my oesophagus. This tube has sensors on it that picks up movement of the oesophagus as food & drink go down it. I wasn’t looking forward to this at all.

Unfortunately, the doctor doing the test didn’t help my unease about this test. The doctor forgot that I was allergic to wheat & had my own bread for the test. He began to get the their pre-prepared bread ready for the test. This didn’t worry me in itself, but what happened next did. I reminded the doctor that I am allergic to wheat & had brought my own bread. He reached out, with his wheat contaminated fingers to pick up my bread. I had to move it away from him quickly. If he’d have touched my wheat-free bread with his contaminated fingers, that would’ve been it. Game over. If they didn’t have an alternative wheat-free option, we would’ve had to abandon the test.

I also didn’t feel the doctor managed my being a wheelchair user well. When getting ready for the test, he looked at me as though he was trying to work out a problem. I worked out that he would usually ask people to sit on the bed. So I told him that I’m able to stand up & if he told me where he needed me, I would find a way to get there. I feel this could’ve been avoided by him telling me that he would usually have people sit on the bed for the test & then asking me if I’m able to manage this.

So by this point, I was rather stressed out. I had an idea of how awful the test was going to be, from my experience with ENT. With the doctor performing the test clearly not listening/understanding my health conditions I really wasn’t in a happy place.

I’m not going to lie, the test itself was horrible. Having a tube pushed into my nose & down my throat was more than just uncomfortable. The tube hit tender spots, which felt sore & my gag reflex kicked in on a number of occasions, making me bring the water that I’d been told to drink back up. It didn’t help that I also brought blood up with the water. That panicked me.

Once things had settled, the doctor asked me to drink a glass of water as quickly as I could. He got quite annoyed with me that after finishing the water I was still swallowing, as it made the results of the test harder for them to read. I got rather upset by this, as I was doing my best not to swallow. I think I did rather well, seeing as I often feel I have to swallow after food has gone past my mouth in order to push it down my throat. In addition, I think I was swallowing as a reflex action, as I could feel the tube down my throat.

Next came the bread, which I had to chew & swallow. This part was a little easier, as the doctor had told me to keep my mouth open to reduce how much I was swallowing. If only he’d told me that before the test started! *rolls eyes*

Because there were two students in the room, the doctor explained what he could see on the monitor to them. Unfortunately, this has left me very confused. He told the students that something was opening, but delayed. I was relieved at this, as I often worry tests will come back normal & I’ll be told that I’m imagining my symptoms, as this has happened in the past. He then started to tell the students that this can happen with water, but doesn’t happen with food, giving a false positive. So I’m left confused as to whether my delayed opening of whatever it is was a false positive or whether the test has shown something useful.

Oesophageal Physiology Tests: PH Recording

The PH Recording part of the Oesophageal Physiology tests wasn’t as bad as the Oesophageal Manometry. The tube (catheter) was thinner & as I didn’t have to drink anything to help it go down, I didn’t vomit. I asked for the PH Recording tube to be inserted through the opposite nostril This was because the one that had the oesophageal tube had been put through was feeling rather sore.

Once the PH Recording catheter was in, the doctor explained to me how I needed to record my food & symptoms on the machine that the catheter was attached to. There was also a sheet of paper that I needed to record this information on. Unfortunately, I really wasn’t in no fit state to process the information I’d been given.

I’d arranged with the department to post the machine back to them. This was because going to London two days in a row would be too much for me. The hospital said that I could remove the catheter myself with no problems. Unfortunately, no one told the doctor this. So he looked very surprised when I told him. The doctor spent a while finding the address that I needed to post the machine back to. I was given no information as to how to remove the catheter either.

It’s great that the hospital understand that it isn’t possible for everyone to come down to London two days in a row, but a little more guidance & forward thinking wouldn’t have gone a miss.

The PH Recording was uncomfortable, but at least it wasn’t as bad as the Oesophageal Manometry. I was able to eat & drink with it as normal. The leaflet says that you can carry on with all day to day activities, but the whole experience left me severely fatigued. So if you think this might be an issue for you, it’s worth cancelling any plans & making arrangements for other people do cover anything important.

I had difficulty with the number of button options to press. There were 5 in total, all for different things & on at least 2 occasions, I completely messed these up. I was so exhausted that I wasn’t able to cope with the simplest of things. To get around this problem, I noted my mistakes down on the paper I was given. Hopefully the person analysing the results will be able to work out what I meant to do, rather than what I actually did.

I was getting so worried about removing the catheter myself, that I cried for a whole hour that night. Having felt the Oesophageal Manometry tube coming out of my throat & nose, I didn’t think I could face doing that to myself. I decided the best thing to do would be to go down to my GP surgery in the morning & get an appointment with the nurse to have it removed.

If you are having Oesophageal Physiology tests & are going to post the PH recording machine back to the hospital, I would highly recommend making an appointment with your GP surgery to have it take out. You can thank me later.

I turned up at the doctor’s surgery nearly in tears. The receptionist was absolutely fantastic. She was so reassuring, which was what I needed having got myself worked up that I was just being a wimp about pulling the catheter out myself. The nurse saw me in the afternoon after the test had finished to take the catheter out & was just as reassuring. When I saw my GP the next day she also reassured me that I had done the right thing in going to them to have it taken out. Because of my EDS, having the catheter in my throat for 24 hours has left me with a very sore neck. I suspect that my muscles were working overtime during those 24 hours & they just need to settle.

The Oesophageal Physiology tests have left me physically & emotionally fragile, which is why I’ve not been particularly active on social media. I knew they were going to be hard, but I didn’t imagine they would be this hard. I’m glad it’s all over now & I really hope that the results are helpful in determining why I’m having problems swallowing.

I have since had a Gastroscopy and Barium Swallow test.

UPDATE: I have been diagnosed with oesophageal dysmotility.

Have you had Oesophageal Physiology tests? How did you find them?

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