Miss diagnosis

[plumber53]

Dear all could I please ask for some advice/help

I have posted on here before on thyroid problems but now I’m at my wits end and desperately need help

So I have been suffering really bad with acid reflux mostly due to a large hiatal hernia I went to my local nhs hospital last Wednesday for a endoscopy that’s all it said on letter of appointment arrived in out patients was taken in room with nurse as she was going through what would happen and about sedation a man walked in and told her to hurry up I asked her who he was as he was really rude she said it was the consultant performing my endoscopy

I was then led into a room sedated when I woke I was in considerable pain obs was taken then was given a form and my daughter took me home I was in so much pain I’ve already had an endoscopy before but never had pain like this

When we got home we read the form 2 biopsy’s where taken and 150ml Botox injection was put in the lower sphinter of the Esophagus I did not sign consent for this and none of this was discussed then I realised that because the consultant rushed me through I never signed consent either for endoscopy I remember seeing the consent form but never signed

That same evening I was so I’ll i couldn’t swallow terrifying pain and my chest was on fire my daughter called 111 and ambulance took me back to hospital that evening

The hospital staff could not get hold of gastric team so admitted on to acute unit a consultant eventually showed Friday evening and said that the burning I had was acid due to lower splinter being relaxed and this will carry on for 6 months he explained that the consultant who performed percedure thought I had a Anesthesia he then produced consent form for me to sign but I refused

Iam still in hospital and have been put on IV saline and Omeprazole I am so scared and upset I feel like there all talking about me I’ve been told the acid will probably burn out my Esophagus and throat I don’t know what to do they said I can go home Friday and take Omeprazole tablet foam but I know that the burning will come back the pain in my chest is constant consultant is staying away because I refused to sign consent form and nursing staff don’t know how to help with pain apart from providing me with ice cubes

It’s just me and my daughter and could really do with some help or advice please

Sorry for putting it on this page/site

[BadHare]

Contact your hospital’s PALS the patient liaison service, & tell them you wish to make a complaint.

[plumber53 in reply to BadHare]

Thank you just tried phoning them and they said no one is available for me to email them and when someone is available they will respond but it might not be till next week

[BadHare in reply to plumber53]

Email, but keep phoning till you get a response. From what you said about the consultant, they might be busy.

[plumber53 in reply to BadHare]

I’ve contacted PALS she is contacting Tuesday next week to write a report Thank you

[BadHare in reply to plumber53]

Great!

Good luck, & I hope you feel better soon!

[Mary-intussuception]

I am so sorry for what you have been through. This is really, really appalling.

Not sure what to suggest for the pain & acid burning. Haven't heard of Omezprazole foam but guess it might coat the Oesophagus? Therefore be of some help?

The ENT Consultants I saw swear by Gaviscon Advance (peppermint ) but I would phone and ask Gastroenterologist secretary about that first or GP.

I am on Zoton Fastab orodispersible lansoprazole tablet, which is faster acting than Lansoprazole capsules.

I can't have OGDscopes because my throat is so narrow.

Sipping warm water with a little Bicarbonate of soda in it would neutralise acid - but again I would seek medical advice first. If you decide to use this it must not be taken near time of Levothyroxine or any other meds.

[humanbean]

Did anyone actually tell you that they were going to treat your oesophageal sphincter with botox to paralyse it? Whose benefit was that for? The surgeon's or yours? Did anyone mention to you that your stomach acid would be able to get into your oesophagus and throat for six months afterwards, and would burn them out? I'm simply baffled that this could be a serious medical procedure that the NHS would spend time and money on. What were they trying to achieve?

I had an endoscopy several years ago and I remember the pain was severe afterwards. In my case this was caused by the biopsies from my stomach and duodenum. I'm not aware of having had biopsies from my oesophagus and nobody mentioned botox to me. But the pain was bad for 2 or 3 months. If I mentioned it to anyone in the NHS I was made to feel as if I was a wimp and an attention-seeker, and other people didn't complain, it was only me.

You will have to experiment with your diet to see what you can do to minimise the amount of acid going up into your oesophagus and throat. Also, raise the head of your bed up on a couple of large blocks. (I have a couple of breeze blocks under each leg at the head end.) It feels weird to begin with, but you get used to it eventually. I have found that going gluten-free has helped me a lot, but I haven't found the magic diet that cures all my problems.

[plumber53 in reply to humanbean]

No one told me about Botox like I said the letter states routine examination I did not sign consent form for endoscopy as consultant was in a hurry I did not sign consent for Botox I was told he thought I had swallowing problems several days later but I don’t I only have reflux which is twice as bad

[humanbean in reply to plumber53]

I think you need to find out why anyone thought paralysing the entrance to your stomach so that it is permanently open was a good idea. In your shoes I would want an explanation. There ought to be a damn good one for making someone go through so much pain, and telling someone that they will end up with life-long damage as a result of a supposedly simple surgery is outrageous and unforgivable.

[Treepie]

For hiatus hernia I saw advertised a Scandinavian product “I Qoro”,

Worth looking at website : iqoro.com

Expensive at £150 when breeze blocks are an option, I have not started to use it as I want to finish my chemo first.

I had two gastroscopy procedures . Both done by clinicians the first was no problem ,a trainee did the second and was a bit rougher but had no after effects. The first took 8 biopsies from my stomach and found nothing , although hiatus hernia and Barratts mucosa and the oesophagus was inflamed . The second biopsies were sent to Leeds where dyes were used and lymphoma found.

My only symptoms were pressure on the chest which was diagnosed as acid and treated with ppi which removed the symptoms.

[birkie]

Hi

This is strange I was in hospital for a total thiyroid removal I am already on omeprazole for acid reflux, my surgery team went through all the procedures I would be going threw and I would be under for 3/5 hours they told me about the breathing tube that would be put down my throat to aid breathing during the op..ok op went very well I was under for about 5 hours...since returning home I had the normal swallowing probs which I was told about,,but as the days went on the swallowing became so bad I called the doc out anyway I had tonsillitis 🙄 I'm now able to swallow but like you I have bad acid reflux and chest pain especially after eating it's so bad I can't lay down I was walking round my bedroom last nite swinging my arms as I also had bad pain in my left shoulder blade..I can feel the acid coming bk up this is something the omeprazole helped with but now it does nothing I even went and got some nexium costs a lot of mine that's not helped either I dread eating because I know I will be in pain,,I must say the pain I had from the breathing pipe is still their my op was on the 8 the of May the roof of my mouth still hurts I began to think what the hell did they do to me when I was under 🤔🤔🤔 if this continues I will need to see my gp also I'm not eating spicy food as I cannot...it's all bland...hope you get sorted and soon best of luck 👍🏻