Sedation

[PoTs_lass]

Hello! For years now been having issues swallowing. The hospital want to do an endoscopy (hope that's the right word!) However for the last year I've been having some unexplained heart problems and low phosphates. I'm terrified to go under any form of sedation not knowing what has happened to me in the last year or so. Phoned the hospital to explain and they really weren't interested and dismissed me. Still not sure I'm going to go ahead with the procedure just needed to vent this out and hoping someone understands 🙏

[cyberbarn]

These days you would be lucky to get sedation for an upper endoscopy. My son and I have both had them. A squirt of numbing stuff up the nose sometimes, (I had one with, one without) then a very small tube is fed up through the nose and down your throat. My son had a comprehensive one, right down to his stomach, no sedation. I had a friend who was desperate to have sedation because she was so anxious, but they refused.

So I wouldn't worry, it will be fine!

[PoTs_lass in reply to cyberbarn]

Thank you for replying! I'm sorry to hear bout your friend, it must have been absolutely awful for them bein so anxious and having to go through that! Trying my best not to overthink it, think it wouldn't be so bad if they weren't wanting to do biopsies this time 😬

[Blearyeyed]

First , don't panic as yet.Whom did you speak to about your concerns a receptionist or the doctor whom will do the procedure?

If you only talked to a receptionist it may be better to ask to speak to the consultants secretary, you can be put through to them by the main switch board . Explain that you have as yet unconfirmed heart symptoms , likely POTS, and remind them that you have EDS and how this can affect your response to local anaesthetic and you are not sure whether this will make a difference to whether you can have sedation or how the test will be done. Ask the Secretary if they can speak to the Consultant and see if they can speak to you or that the secretary can send you an email with their advice . If you don't hear back fro them that day ring back a few days later to ask if they had got your response.

People seldom get a general anaesthetic for an endoscopy and more often just receive spray or a mild oral sedative which makes you relaxed or sleepy but not fully under.

Whether you get any sedation for an endoscopy depends on whether there is a chance that you will need it. Ordinarily, they try to do it while you are conscious using a numbing spray alone. The reason some people with EDS may get a sedation depends on what is involved in the procedure itself and if they don't respond to local anaesthetic. In terms of your heart responses , they will give you a check up of your Obs before they even go ahead , and assess them as they work.

They may choose to send you for a quick ECG on the day before they begin just to make sure that you are in normal rhythm if your BP or heart rate are a little high or low. If your heart rhythm is normal they will carefully proceed but if there is any doubt about things they will delay to another day.

The people doing these tests are usually very kind and caring and try to get the tests done with as little pain and discomfort to you , and stop if they need to at any time you feel you can't continue or your other symptoms change( I've had about 8 now including ones that took biopsies from my stomach , two GA , two numbing spray , four combo or local and oral sedation). You may need to remind them of your EDS and that local anaesthetic/ spray may not work for as long on you which means they may need to respray to repeat the local if you are in pain .

It's good to drink the recommended water per day for at least a week before and after the test. Drink well up to the time you can before the procedure. I took my normal medications at the times I could around tests, I found taking a Antihistamine and my anti nausea medication reduced my symptoms . It can be sore afterwards for up to a week but gargling with warm green tea or water and honey and taking Paracetamol can ease that.

Hope things go well , take care and let us know how you get on , Bee

[PoTs_lass in reply to Blearyeyed]

Bee thank you so much for taking the time to reply! You've helped put my mind at ease a little bit that they will do lots of checks before hand. When I rang the hospital it was a nurse I spoke to but she was so dismissive. Hopefully on the day I'll have someone with a bit more of a care for the patient. Understand they work so hard but there just wasn't any need for how rude she was!Hopefully I'm a few weeks I'll be posting it was all good 😊 first time having to have biopsies so I'm overthinking everything a bit especially the things that has happened in the last year or so, reading you're experience has helped put a more reasonable voice in place in my head. Thank you, Jules

[Blearyeyed in reply to PoTs_lass]

If you need to talk about it at all or have more questions post again or please feel free to send me a private message I will help if I can , take care , Bee

[PoTs_lass in reply to Blearyeyed]

Bee thank you so much for you're kindness, really do appreciate it.Jules

[Beezwax]

I have had several upper GI endoscopies and had some with sedation (injection) which relaxes you but doesn’t put you to sleep, and some without the sedation but with a numbing spray. Personally I can’t stand the numbing spray so prefer the sedation by injection. If they give the injection they have to monitor you continuously and for about half an hour after the procedure. You would also need someone with you to take you home.

I would attend for the procedure but make sure you tell them about your other health problems on the day (even if you think it’s in your notes). To be honest if you opted for sedation they would want details of all health conditions before going ahead. Also make sure you tell whoever is carrying out the procedure once you are in the room (you don’t get sedation until they are in the procedure room so you would be able to have a chat before anything goes ahead and if you don’t feel comfortable you can still refuse to have the procedure done or refuse sedation- this is easier for them as they don’t have to monitor you so much.)

Make sure they know your swallowing difficulties. I have swallowing difficulties and was diagnosed with a diverticulum (from having an endoscopy) and after this I was told to always tell any doctor before an upper GI endoscopy that I have a diverticulum because they need to be careful with the endoscope.

As a side note, my husband needed an operation (with a general anaesthetic) last year. He had also been seeing the GP for high blood pressure concerns (a separate issue to the operation) and we were a little bit concerned this could cause problems during the GA and operation. On the day I wrote a note with all the concerns (my husband would have been too anxious to tell them on the day and there were still covid restrictions in place so I couldn’t go in with him). Everything went fine and my husband told me later they had read the note and taken the concerns seriously with extra pre op monitoring.

Hope this helps.

Best wishes.

[PoTs_lass in reply to Beezwax]

Thank you for taking the time for replying to me! You've helped me realise I don't have to go ahead with anything I'm not comfortable. I'll definitely be writing up some notes for myself in the next few weeks it's a good idea to get everything needed across and not forget something important. So glad your husband was ok too, sounds like you both went though a extra stressful time especially with the COVID restrictions being in place too.

Thanks again, Jules