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Ignorance And Scepticism Can Be Fatal...


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My Gastroparesis (inability for the stomach to empty its contents) has been getting worse lately causing severe nausea and I am finding that foods I ate 2 days ago are reappearing and still undigested when I vomit. I consulted a Gastroenterologist who arranged for an endescopy. I had to explain to him about my Dysautonomia and how exteremely sensitive I am towards all substances that act on my Autonomic Nervous System and that I would not be able to have anesthesia as I can't even tolerate my opiate pain medication without ending up in the ER with severe adverse effects and distruptions to my vitals.

So he agreed I would have the endescopy unsedated. When I arrived for the procedure the nurse and the staff there had no idea about the arrangement I had for my request to not be sedated. When the Nurse was suprised at my request and told me it would be very uncomfortable, I then had to explain to the nurse once again about my condition and then showed her all my history and documents from my Neurologist, Cardiologist and Specialists explaining how I am hypersensitive to many substances more so than others with Dysautonomia and a showed her the results of a laborotary test indicating the adverse reactions I had towards an aministered opiate under controlled setting conducted by my Neurologist.

She agreed and said I would still have to speak to an anesthetist and I told her that was fine but I wanted to speak to them before being taken into the endescopy room. Despite my request I soon found myself on a bed being wheeled into endecopy theatre where i was then surrounded by 7 medical staff including the Gastroenterologist who is waiting ready to start the procedure. Then the anesthetist comes in and says "tell me why you don't want to be sedated" :o

I'm lying on my back, seconds away from the procedure and everyone in the room is now looking at me waiting for me to explain to anesthetist why I can't be sedated. Despite trying my best to avoid that exact same scenario by requesting to speak to an anesthetist earlier I still ended up in the exact same nightmare moment. :wacko: :wacko: :wacko:

I wasn't about to tell him in front of 7 people that 12 years ago I had a drug overdose to ecstacy which damaged my Autonomic Nervous System and left me hypersensitive to stimulants, anelgesics, sedatives, anestheisa, opiates, alcohol and any other substance that stimulates or depresses my autonomic Nervous system in someway. Instead I did my best to briefly explain my chemical sensistivity is a part of my Dysautonomia. So then he asks me;

"what happens when you have Anesthesia ?"

I replied saying: "probably the same thing that happens when I take opiates to manage my chronic pain, I end up with a distruption in my vitals causing problems with my blood pressure, temperature, heart rate, breathing, muscle spasms etc"

He then became sceptical and says: "This is different than opiates, you should be fine, I am just going to give you a bit of propofol"

:o:unsure::angry:

"I then tell him "its not just opiates, I have reactions to all substances that act on my ANS, look if you dont believe me I can show you, i brought in all my documents from my specialists but the nurses put them away in the outside locker and if I knew I was going to have this last minute discussion I would have brough them here to show you"

He replies saying "well if your that sensitive than your likely to have even worse reactions to the effects of the endecopy being put down your esophegus and the air we use to inflate your stomach"

Now I just wanted to jump out of that bed and smack him. Here I am doing my best to stay courageous at the idea of having an uncomfortable procedure unsedated and here he is putting ideas into my head about having even worse reactions if I dont have anesthesia and trying to scare me into submission when he dosent realize how easily he could kill me if I agree to be put under. I am already feeling nervous at having an unsedated endescopy and in my nervous state I am then expected to accurately recite my medical history and convince his sceptical *** that I do infact have a real valid concern as to why I cant be put under anetheisa and I had to do it without showing him my documents, whilst laying on my back staring at the ceiling seconds waway from the procedure and not only convince him but also the 7 eyes surrounding me all glaring at me waiting for me to give everyone a valid reason why I should not be given Diprivan (propofol, the same substance that killed Michael Jackson).

They put me in a horrible situation and it made me furious that it could have all been avoided if I had been given the oppurtunity to talk to the anesthetist before being taken in to the procedure room like I requested. It's a moment where I need to be at my most relaxed and calm state as they are about to put a garden hose sized tube down my throat and inflate me and I have the fight all the gagging and retching and on top of it all I am being pressured by a septical, clueless anesthetist who just wont take no for an answer. He kept trying to pressure me into being sedated when he has no idea about my medical history or even what Dysautonomia is and hasnt even bothered to look at any of my paperwork. Part of me made me wish I could have said yes just so when he did kill me he could have learnt a valuble lesson to be more thourough and to never underestimate a patient. Even if I was going to have anestheisa that trigger happy, clueless, sceptical, insensitive anesthetis would be the last person on earth that I would allow to put me under. He looked like new graduated rookie and he acted even more like it. He made me appear as if I was an over-reacting anxiety freak to everyone in that room.

I am proud to say though, I did not even flinch when that tube was put down my throat and they told me it was the best they have ever seen anyone tolerate an unsedated endescopy but the only bad taste left in my mouth that day was from the way I was treated by the anetheitist and how unwilling he was to review my medical records.

Edited by corina
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Oh, hon - you were so brave and I'm proud you stood up for yourself. We know our bodies better than anyone else and we know what we can and cannot do. I'm glad you did so well with the procedure despite the horrible drama it created for you. I hope they find some answers to your problems and you don't have to repeat this eposiode any time soon.

Issie

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  • 4 weeks later...

Wow, you seriously deserve the medal of bravery for that! Amazing!

Btw why are they doing that procedure on you. My gf had it done a few months ago, because she doesn't go for weeks and he had awful pain, like gerd. But the doc doesn't even suspect delayed emptying. I only just brought it up to him because of how nauseous she always is. He said the the endo should only minor acid, but she was on tons of antacids. He said the delayed emptying test is completely different. Also she did not handle the anesthesia well at all it was hard to get her to wake up from it :/

Can't believe these anesthesia docs, they make almost as much as the ones doing the procedure that's why he was trying to force you..pshhh

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These people are cowards. You tell them you don't mind the pain and they are worried about things like a little screaming or moaning. I've told more than one doctor to do a painful procedure with little or no medication and you should see how frightened they get! I always wonder if they are they worried about their eardrums or whether this is where the conscience of a doctor surfaces (never seems to appear when they want to put you down and tell you about phantom anxiety, can't see how anyone still said that when you told them you'd endure pain nobody else does).

Hope they told you you are a great hero with nerves of steel! And may they think they learned something from what they must perceive as a great show of emotional strength. If they can't figure out that excruciating suffering is worse than pain for some of us, they will have to admire our great courage.

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Endure, you have the right name! You poor thing, I was absolutely horrified reading that, and I'm in awe of your bravery. I'm so glad that that horrible bit is over, and really hope that you get some helpful results. I'm shocked that they hadn't already been informed with your medical records from your doctor, it shouldn't be up to you to let them know what might kill you,- THEY are the medical professionals and should make it their business to keep you safe! "Grrrr"ing on your behalf! x

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I am so proud of you for continuing to stand up for yourself and not cave. I have caved many times under this kind of pressure and have had to suffer the consequences. Most times, now, I don't cave since I've learned that the docs don't suffer, no one else suffers but me. You go!

And, take care.

Lindajoy

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Wow...that's amazing. That was a very brave stance you took, when it would have been a lot easier to have run. I'm proud of your perseverance!! Way to go!! What ever happened to the patient advocate?! You're the one paying for the procedure after all. You should be able to have it done anyway you like. When I see arrogance in the medical community it saddens me...it actually shows their insecurity and weakness, when they lack the control. I can only say this being a retired RN. I'm glad you stood up to them!! You will Endure :)

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Wow, you seriously deserve the medal of bravery for that! Amazing!

Btw why are they doing that procedure on you. My gf had it done a few months ago, because she doesn't go for weeks and he had awful pain, like gerd. But the doc doesn't even suspect delayed emptying. I only just brought it up to him because of how nauseous she always is. He said the the endo should only minor acid, but she was on tons of antacids. He said the delayed emptying test is completely different. Also she did not handle the anesthesia well at all it was hard to get her to wake up from it

Can't believe these anesthesia docs, they make almost as much as the ones doing the procedure that's why he was trying to force you..pshhh

I have had every possible test on my stomach known to man and they are very unpleasant all of them. A gastric empting scan is where they will have you eat a small sandwhich or oats and then get you to blow in a special bag at timely intervals in the hour,but in total spread over 4-5 hours. From the breath test they measure certain gasses to see how fast your stomach is emptying. The other type of gastric emptying scan is when you eat a nucklear type meal and you are scanned as they can watch the food travel through your stomach and intestines.

Then there is a 24 hours small bowel test where you have two wires put down the back of your nose to your small intestine, and the worse part about it is you can not be sedated for it. You have to keep these wires in places for 24 hours and the computer you wear on a satchell reads the contractions and rythms that your small intestine is doing. You can have a normal emptying stomach time, but a slow acting small intestine, depenind on the patient.

But having an endoscopy for Gastroparesis is not the best test to have in my opinion nothing will show up unless there is an obvious blockage or ulcer or hiatus hernia .

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