Results of a Manometry not taken serious, am I being silly

[sozzy42]

Desperate for some help please.

I have Barrett’s Oesophagus and had this for many years. Last year I started getting central chest pain and had a CT scan which nothing significant was found.

I have kept driving my GP mad with this pain which now radiates to my back. Sometimes also a pain in the left side. It’s slowly getting worse, losing weight slowly and I’m not big to start with.

I was sent reluctantly by dr to have a endoscopy and just showed the Barrett’s. I was then sent for a Manometry which showed 100% failed peristalsis on swallows and my lower oesophagus sphincter was hypotension. I also had a 24 hour ph-impedance reflux monitor which showed acid reflux and significant aerophagia nothing else.

My consultant said it’s nothing to worry about and no further action. He said the chest pain is not related as the oesophagus cannot hurt. I think this is wrong.

I asked my GP for a second opinion but she said he’s the best and it would be a big mistake!

Any advise would be really really welcome as I don’t know what to do next.

[TishH]

Food getting stuck in the oesophagus does hurt!

[TishH in reply to TishH]

I was getting desperate during Covid-19, and after constantly emailing my Consultant's Secretary, plus badgering my GP to try to get some sort of test arranged, I felt I had no option but to go private for the tests. The manometry results showed I have non-specific oesophageal motility disorder, and when I finally saw the NHS Gastroenterologist he said there were various medications that were intended for other conditions, but could help to relax the oesophagus. The only one suitable for me is Tensipine, which is normally prescribed for high blood pressure. Mine is already low, so I'm on a small dose. Food and drink is still getting stuck, but the pain level and discomfort is so much better, so I guess things have loosened up a bit.

[sozzy42 in reply to TishH]

Thank you for replying

The badgering of GP’s is so frustrating! I feel like I’m actually going mad. I know somethings wrong but getting someone to listen is frustrating.

The consultant doesn’t seem bothered so I don’t know what to go back to him with.

I’m glad you got sorted in the end and that you feel a bit better

[meadfoot in reply to sozzy42]

Thank you. Its darned hard work to deal with ongoing thats for sure.

[TishH]

I hope you get the help you need soon

[FKM100]

I would say, keep on at your GP. A life of constant pain is not "nothing to worry about" and nobody should try and tell you that it is.

[meadfoot]

I feel your pain, literally. I have 100% failed peristalsis too and chronic acid reflux. The pain is awful and very little relives it. I have seen two consultant gastroenterologists at two different hospitals plus two gastric surgeons. Had all the tests you mention plus many more. I have also had a Bravo capsule inserted into my oesophagus to capture data on acid reflux.

I cant have a fundoplication procedure to help the reflux as the failed peristalsis would mean I would be even worse off and obviously medics dont want to do that, that way madness would lie,

So where does that leave me, cant speak for where it leaves you sadly. I remain on gaviscon advance to take the edge of the reflux, have famotidine to try but, mm, not sure about that one. Cant take PPIs as they throw me into arrhythmia another condition I content with. I sleep sitting up to control reflux, eat small meals nothing spicy , bland food and dont eat after seven pm. The pain I am in during flare ups every two or three weeks becomes intolerable, it took a long time for me to accept it was gastric generated pain rather than heart attack as it feels like cardiac pain, sadly I know both pains.

Its hard to explain how distressing, debilitating and painful this condition is, I feel for you. Heres hoping you find some relief and some freedom between very bad flare ups. My GP was patient but between us we were at a loss what to do most of the time. I just try to truck on every day but its draining. Best wishes.

[sozzy42 in reply to meadfoot]

HiThank you so much for taking time to reply.

It made me really sad listening to your story as it seems we are a carbon copy of each other. I feel exactly what you are going through and sadly no great outcome.

My consultant is in the middle of asking another consultant if I should have the Bravo test. Im so sick and tired of having all these unpleasant test for no positive out come.

Please keep in touch it would be good to know how you get on.

[Mauser1905]

Sorry to know of your pain.

Fundoplication is not going to work where lack of peristalsis exists. It would be clinical suicide to even attempt that.

Sometimes being too obsessed with the unknowns and stressing the mind and body, eventually leads to worsening of the oesophageal muscles functionality. Mental health does have direct affect of the underlying conditions.

Lack of peristalsis can't be fixed with medicines. However with managing mental health and good pain relief can be a better compromise.

Surgical fix would mean permanent external food pipe with or without removal of oesophagus.

Perhaps what primary care is doing is maintain status quo and YOU find a balance.

Unfortunately it's always a give snd take transaction when it comes to such things.

[Mark4]

Have you been checked for gall stones ?

[sozzy42 in reply to Mark4]

No, is that a possibility?

[Mark4]

Well they are common and can cause severe pain below rib cage and elsewhere and I have them so can sympathise - pain usually subsides after 1-2 hours

Just a thought

[sozzy42 in reply to Mark4]

Thank you, I will look into this

[LucyBoo21]

Hi, I've come across your post while searching for help for me and would love to hear an update from you. I have had central chest pain for almost 2 years. A year ago I had 2 bad episodes and was sent to a cardiologist. My LAD artery was 99% blocked and a stent was fitted. My chest pain didn't go and I was given a GTN spray which does work if I take before walking (it always comes on when walking quickly). In May I developed ulcers in my oesophagus. I've been under a gastroenterologist for a few years with gastro issues - blockages mainly, diagnosed with GORD. I also have an oesophageal inlet patch and it's thought that is a cause of my issues (but not the pain) so last week I had HALO ablation on it. My chest pain has got worse since which makes me think it's gastro related but medical professionals all think it's cardiac.

Can anyone give me any info or have you experienced similar?