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Mary P

Anaesthesia

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After a virtual colonoscopy I saw a gastroenterologist for the results. There were problems in the sigmoid colon and for about 1 foot above that. It is tremendously painful for me to have a regular colonoscopy and brought him proof from my previous doctor and pathologist, yet reluctantly agreed to have a sigmoidoscopy, feeling I need to know what's really happening to me.

I have OI, both NMH and OH and I tried to explain that I couldn't tolerate the regular type of anaesthesia. He hadn't heard of Dysautonomia and was either annoyed or disinterested when I tried to explain how I thought I must have died when I didn't awake for 2 hours after a regular colonoscopy in 2000.

He promised to use just a bit of relaxant, but I had given consent that 'just a bit' of relaxant be used for the virtual colonoscopy. That 'little bit' made it almost impossible for me to get up, change into street clothes. My son had a transport chair waiting for me right outside the change room and I fell into it and then into bed when I got home. My mind was 'out of it'.

I had info saying what anaesthetic is best for OI patients but he knew nothing about it and again dismissed my concern. I told him about my constantly low BP and said it would have to be continually monitored and that I'd need an IV from the beginning and he did agree to these conditions.

Still, after 2 bad experiences, I'm scared that the regular anaesthesia might really kill me. I'm new to Toronto and can't just find new specialists easily. I think to myself, "If I do die, at least I had my son sit in on the consult and he can verify everything I told the doctor".

Can someone please advise about what to do in such a situation? Thank you to any or all who can help.

Mary P

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After a virtual colonoscopy I saw a gastroenterologist for the results. There were problems in the sigmoid colon and for about 1 foot above that. It is tremendously painful for me to have a regular colonoscopy and brought him proof from my previous doctor and pathologist, yet reluctantly agreed to have a sigmoidoscopy, feeling I need to know what's really happening to me.

I have OI, both NMH and OH and I tried to explain that I couldn't tolerate the regular type of anaesthesia. He hadn't heard of Dysautonomia and was either annoyed or disinterested when I tried to explain how I thought I must have died when I didn't awake for 2 hours after a regular colonoscopy in 2000.

He promised to use just a bit of relaxant, but I had given consent that 'just a bit' of relaxant be used for the virtual colonoscopy. That 'little bit' made it almost impossible for me to get up, change into street clothes. My son had a transport chair waiting for me right outside the change room and I fell into it and then into bed when I got home. My mind was 'out of it'.

I had info saying what anaesthetic is best for OI patients but he knew nothing about it and again dismissed my concern. I told him about my constantly low BP and said it would have to be continually monitored and that I'd need an IV from the beginning and he did agree to these conditions.

Still, after 2 bad experiences, I'm scared that the regular anaesthesia might really kill me. I'm new to Toronto and can't just find new specialists easily. I think to myself, "If I do die, at least I had my son sit in on the consult and he can verify everything I told the doctor".

Can someone please advise about what to do in such a situation? Thank you to any or all who can help.

Mary P

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Hi there -

If it were me -- I would look at my old records and tease out which medications were administered to you and their dosages - and your response to them. So a very common combination given to people is Fentanyl and Versed. The Versed helps you to have brief amnesia - so if anything is painful you do not remember it when dosed appropriately. Then the Fentanyl is a pain reliever they put on board as well.

I would take that record to a doctor I trusted - I hope you have one now? And just have a chat with them. You could say to them, "I was very very groggy for over two hours after I finally woke up and that took two hours" Then you could tell them how that concerned you. Like you were scared, or couldn't function normally for days - or whatever your concerns were. Then I would have that doctor then put it into the context of how your typical days vital signs go and how this is likely from dysautonomia diagnosed etc.... Saying things like, "I have concerns about the amount of medication they give me - I don't need much at all. Or "I would like a different less potent medication" Hopefully that doctor could communicate with the gastro doctor with recommendations.

In any event I think it would help you to actually speak to an anesthesiologist or a concerned primary care doctor about this so you go into the procedure confident that your concerns are truly taken to heart - as they answer your questions and perhaps network with your gastro doctor.

If the doctor is worth his salt - he will be having the procedure in a clinical setting (hopefully a hospital) that is well equipped to handle any emergency that should arise. If you require lots of time to come out of the medications effects then have your test first thing in the a.m. AND have the doctor review with you the steps he is taking to address your concerns from the beginning....such as supplemental oxygen or whatever he thinks is prudent.

With my "hyperresponsive" type constitution - I had a double dose of Fentanyl and Versed and was not alseep even for a second. I watched the entire procedure on the monitor and was fascinated. Same with when they put in my Femoral block for my knee surgery - they tried to knock me out and all I did was learn how to insert the block in the thigh - with all the other anesthesiologists. YET in spite of being too hard to put down - I did get lows in blood pressure post op with the knees........not the colonoscopy though.

So I never really do anything until I am fully comfortable. I've arranged consults with radiologists to discuss varying opinions - I've met with doctors frequently to get all my concerns addressed so as not to overwhelm them at one visit. In the end it's your body and you have to be willing to do what you think is best for it.

The colonoscopy with the conscious sedation was a breeze aside from the prep -- but I never slept - If you feel as though you may need intensive type care post procedure -- then by golly tell someone this and get these concerns addressed -- you should never be blown off -- even if it does 'annoy' a busy doc. He should respect you voicing your past experience - so he can best serve you as comfortably and safely as possible. Maybe speaking with his nurse or nurse practitioner could be one way to gain more information....& confidence that your concerns about your body reacting differently than they present in the materials is heard.

Don't be railroaded....act on your smarts and intuition and get things ironed out ahead of time so you can get your procedure in peace..... good luck to you

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Hi there -

If it were me -- I would look at my old records and tease out which medications were administered to you and their dosages - and your response to them. So a very common combination given to people is Fentanyl and Versed. The Versed helps you to have brief amnesia - so if anything is painful you do not remember it when dosed appropriately. Then the Fentanyl is a pain reliever they put on board as well.

I would take that record to a doctor I trusted - I hope you have one now? And just have a chat with them. You could say to them, "I was very very groggy for over two hours after I finally woke up and that took two hours" Then you could tell them how that concerned you. Like you were scared, or couldn't function normally for days - or whatever your concerns were. Then I would have that doctor then put it into the context of how your typical days vital signs go and how this is likely from dysautonomia diagnosed etc.... Saying things like, "I have concerns about the amount of medication they give me - I don't need much at all. Or "I would like a different less potent medication" Hopefully that doctor could communicate with the gastro doctor with recommendations.

In any event I think it would help you to actually speak to an anesthesiologist or a concerned primary care doctor about this so you go into the procedure confident that your concerns are truly taken to heart - as they answer your questions and perhaps network with your gastro doctor.

--------------------------------------------------------------------------------------------------------------------------------

Hello nowwhat.....Thank you for your informative and knowledgeable response. After reading this I've decided to see my GP and impress on her my serious concerns and hope she'll respond in a caring way. I do know that she's quite concerned about my mounting problems. I'll also phone the gastro's nurse and ask her to speak with the anesth....

I must also write to the surgeon who performed the 2000 colonoscopy where things went so wrong. Also the hospital where I had the recent virtual colonoscopy. I'll have to work fast as the sigmoidoscopy is just 4 weeks away. it seems he'll give the anaesthesia himself but I'll ask to speak to an anesthetsiologist. It will take place in a hospital. I felt pain from the beginning to the end and passed out when my BP plummeted and that was at the end of the procedure. Again, thank you so much.

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Well again good luck - and you can hopefully always reschedule the date of your test if you feel not adequately prepared. Basically though I'd get a copy of the short report dictated by the doc who did your old colonoscopy. That will have in it the medications given, the time given, the route, the dose....& then you will also be able to read the nurses note too - such as did they give you a second dose because you were hurting ... or just what happened. It should include your vital signs also - and how you recovered. Once you obtain that record from his office - then you can show it to your doctor or your gastro doctor - or their nurse or nurse practitioner or PA...however it works. You can tell them unfortunately you had a tough time of it and you'd like for this round to go better - and hopefully they will reassure you with what the 'new' plan will be for this go around.

When I had an intractable pain experience in my first knee replacement - you better believe I told my surgeon that we will not be going that route again - because I will never consent to the other needed knee replacement. Well a couple of months passed and I knew it had to be done - the other knee. So I did my homework and found many people did well with a femoral block and an indwelling catheter and pain pump for a day or two post op....It was a bit of a big deal cuz I live in the middle of nowhere ... but they had just hired a new anesthesiologist who was an expert at these at the hospital - so he taught everyone (including me cuz i wouldn't fall asleep lol) how to insert one.... Anyway things went worlds better...I was so grateful ... but I still needed a ton of post-op meds (perhaps due to hypermobility syndrome where locals don't work so well even if the surgeon floods an area with local). Later I had a battle with insurance as they didn't want to pay for the fancy anesthesia - and in the end the very kind anesthesiologist overlooked a near 900 hundred dollar charge....

So while a sigmoidoscope is not near as long or labor intensive as a big surgery --- they still must keep records. The options for anesthesia for that are probably limited somewhat in that basically I believe it's only conscious sedation. So Versed so you don't know what's happening or remember what's happening - and a pain reliever if it should be painful. The procedure itself seems as though it should not be painful - so having a doctor you trust is important. So that if it is painful - or you feel pain - you should have a nurses hand to hold and to talk with the entire time...telling her or him how you are doing -- Ideally you will be totally unaware of anything at all d/t the Versed. It should be quick and non-traumatic actually. Hopefully you can speak with someone at the hospital - either the endoscopy nurses or some physician that does endoscopy to find out what your options are concerning having a pain-free test with vital signs that behave the entire time - in spite of your health conditions and your experience in the past. Hang in there - :-)

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I've had a colonoscopy and a sigmoidoscopy, for the colonoscopy they used the "milder anesthesia" not the full not breathing on your own kind, but for the sigmoidoscopy, they did that without any anesthesia or drugs at all. I'm not sure if there are different kinds of sigmoidoscopies , so yours may be different. But as far as I was told, that was kind of the point of doing the sigmoid. so they dont have to do the whole full colonsopy, with anesthesia and the more intense prep.

Just to prepare you, cause I do better when I'm prepared, but ha, if you dont want to know about the test, maybe dont read on... I will be honest though and say it wasnt fun for me. It is a relatively short procedure, cant remember exactly, but maybe 15min? But the dr told me it wouldnt be painful, so I wasnt expecting anything. At a certain point, they will pump air into you and i think from that and whatever else they do, you feel, or I should say, I felt almost like sharp gas pains. So I didnt like that, but I think it was worse for me cause I wasnt expecting it. It wasnt for too long though, so it's manageable, not excruciating, but not pleasant. And I kinda get that vasovagal reaction to pain, so as the procedure was ending, after the pain had stopped, i started to feel like i was passing out. but i didnt. Anyway, some people dont have much pain, so it could just be cause I'm sensitive.

Also, interesting to know that the anesthesia reaction can be related to the dysautonomia. i can get it, but i always feel so sick afterwards, like i'm always that patient that can still barely stand , after other patients would be home already. and with full anesthesia, i'll be more dizzy, weak, faint, for like 2 weeks afterwards and no one can explain why. ha, now i'm wondering if it's related to the POTS?

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I really appreciate your responses, nowwhat and caterpilly. I also love your names. I do have the report on the colonoscopy that created so much pain and there is nothing about the type of anaesthesia used. There is no nurses report and once when I asked for this I was told that nurses aren't allowed to give out such info. However, it was a nurse who very kindly told me that my BP plummeted when I was given a second 'dose' of anaesthesia because I was in such great pain. I actually feel I was given too much but no doctor is ever going to admit this. My BP is always very low to begin with.I remember moaning loudly for some time and then I guess the second dose was given. The surgeon was with me when I was finally 'coming to' and asked if I'd felt any pain. I said, 'Only when it was really bad'. He said, "That was the entire time". So I don't really know when the second dose was given. He recommended that I never again have the regular colonoscopy because it was too dangerous for me. However, either a full colonoscopy or a sigmoidoscopy are the only ways to check to see what a problem may be. Still, if it turns out that there's no major problem, ©, I'll never again go through even a virtual colonoscopy.

I'm done in for the day and will write more tomorrow. I'm going to send the doctor here a copy of what the last surgeon said and also some records of the BPs I've been keeping every day since 2007. I really don't think the gastro.... got what I tried to convey and also didn't appreciate that I knew lots and wanted to tell him that I was fully aware of my health situation. I think those of us with Dysautonomia have to search and learn a great deal for ourselves. I live in Canada and we don't have the great places like Mayo and johns Hopkins like the USA has. It wouls totally bankrupt me to travel to one of these places to seek answers and help.

Will chat tomorrow.

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Hi Mary P,

Can they do a lower GI Barium Enema? It's not nearly as invasive. I had this done 2 1/2 years ago. They're not sure if I had polyps, but I had excessive diverticuli in 3/4 of my colon, and this is way too much for anyone. This is probably connected to my EDS, and so it the large diverticuli in small intestine that is 5cm. Because of family history of colon cancer, I need to get a colonoscopy done, or at the very least lower GIs every two years. I went to the Cleveland Clinc, and they were pretty good at taking my concerns with aesthesia seriously-------------in the beginning. :rolleyes:

They even wanted to include my family in a research study. However, after talking with the doctor who was going to do the actual procedure I started to get doubts. Actually it started before that when I thought I was going to be talking to an anesthesiologist, but got a "secretary" who took information about my dautonomia, and my upper spine and brain stem compression. They seemed dismissive, like I was being overly dramatic. I was told propofol was going to be used, and that I would be completely out. I think they thought I would be a train wreck and a difficult patient, so just put me out so they don't have to deal with it. WRONG.....I'd rather deal with the pain, and know I'm going to wake up.

I still scheduled my colonoscopy, and was going to go, but when I went to my PCP a couple days before it was scheduled he told me I wasn't stable enough for the colonoscopy, and that I needed to follow up with my POTs doctor. This is when my catecholamines came out really low. My BPs have been really low, and heart rate not compensating. I also have sleep apnea. The sleep apnea is related to my brain stem compression. I have trouble breathing sometimes while sitting up. I don't think the GI doc took it seriously. These doctors have to listen to us, or we're not going to get the "other" medical care we need. We're going to be non compliant out of fear, and we have every reason. I've seen "mistakes" happen. MY PCP has told me about "mistakes". That's why he's telling me to cancel, and has more then once.

I'm still on the phone with the Cleveland CLinic asking them to find a way to get me through this without any problems. My condition has taken some bad turns this summer, and I need them to listen now more then ever.

You have to stand your ground and do whatever is necessary to make sure your procedure is done safely.

I understand your fears------I have them myself. Don't let anyone be dismissive with you.

Maxine :0)

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Hi Maxine,

I'm truly happy to have heard from yet another knowledgeable Dysautonomia sufferer. I'm not sleeping at all and as we all know, that makes things so much worse. I'm so scared that, along with a funeral director, I'm making plans in the event of my death, and I'm updating my will.

I'll have to phone the gastro's secretary to ask about a lower GI barium enema. He's on holidays now for a few weeks. I feel as you do. Although the pain is horrendous, I need to know that I'll wake up. I don't know if he'd accept a cancellation so I can talk to him again. I think he feels he's heard all he wants to hear from me. He was chuckling to his secretary that it would be harder on him than on me. I know from reading the 2000 colonoscopy that I also have excessive diverticuli and probable IBS. I imagine that shoving through all this has to be painful for anyone. He said he'd be very gentle but I don't imagine anything will feel gentle. The surgeon who did the colonoscopy in 2000 was a kindly and gentle man.

Anyhow, I've had a really bad day, could barely walk pained all over, so will write more tomorrow when I can read and tell all of you more about the 2000 colon....and 2004 virtual colon.... . Whatever happens, there will never be another one.

A sister-in-law of mine said to her doc, "Take a good look around when you're up there because it will be your last chance".

Your care and concerns and suggestions mean a lot to me. Mary P

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Hello to nowwhat,caterpilly,Maxine and all who may have to have a colonoscopy or sigmoidoscopy some day.

Here are some of the things reported by radiologists. I think that at least some must be important enough to follow up on yet no doctor has said a thing to me. As far as I could tell, there was no mention of any type of relazant used.

Scan of abdomen and pelvis without contrast. 2009 (100 ml Omnipaque 300 was administered intravenously....I don't remember anything given intravenously. What is this?

1) There is a zone of the distal sigmoid colon where there is a combination of mural thickening, diverticulosis and mild adjacent mural thickening. The features are probably due to localized diverticular although the lumen itself is difficult to appreciate. *(What in the world can this mean?)*

2) There are several mildly dilated loops of small bowel but they are in skip areas and there is no significant thickening or other abnormality of these loops.

3) Probable focal diverticulitis in the sigmoid colon.

4) Most likely mild reactive ileus.

5) Neoplasm in the sigmoid colon cannot be excluded with absolute certainty,but is not suspected.

CT Colonography 2009 ( 100 ml Omnipaque 300 was administered intravenoiusly.) I'm guessing that this was a type of relazant??)

1) There was incomplete distension of the sigmoid colon.

2) Multiple cortical cysts in both kidneys.

3) Multiple Small amount of pericardial fluid.

I guess all I can ask is:"What if any of these conditions would cause severe pain"? I've decided to ask to delay the procedure set for Oct 5 and ask to speak with an an anaesthesiologist and request that he/she be present to monitor 'everything'.

I'm not allowed to read or get a copy of the recent CT colonorraphy so will have to write to the radiologist to send me a copy. I don't know about other countries but in Canada the reports 'belong' to whoever writes them and we have request a copy from them.

I'm still having doubts but if I can speak to the anaethesiologist I may feel better about a sigmoidoscopy.

Mary P

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I had this info with me when I saw the gastroenterologist but he wasn't interested. At any rate, I'm passing it along to DINET members as it may be of some interest to some of you. I found this through 'GOOGLE'.

The Northern Virginia CFS/FMS Support Group anesthesia & procedure preparation

I'm sure that those of you who live in USA will already know of this group.

There is info on non-histiming releasing anesthetics which I want to ask an anestheliologist about. The gastro... didn't want to hear about it.

There's also a story from a woman who had a colonoscopy and how things were going very wrong for her until she remembered and told them about her OI. The article also advises having a Medical ID and I know this has been discussed on this forum before. I guess for someone with a lot of issues it would be impossible to get all your info on a small bracelet tag. Interestingly, one thing that is mentioned is 'sensitive to anesthesia'.

Maxine, you're very fortunate to have a PCP who'll advise you when you're not strong enough for a particular procedure at a certain time. Good for you and your doctor. I wish you all the best whenever your colonoscopy does happen. Would you consider asking for a CT Colonography? There is some pain but it is short lived and comes from the carbon dioxide used to 'blow up the colon'....like a balloon I guess. It was the relaxant that caused the problem. Mary P

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Hi Mary P, I just found this article on anesthesia in a POTS patient:

Oxford JournalsMedicineBJAVolume97, Issue2Pp. 196-199. Expand+Anaesthetic management of a parturient with the postural orthostatic tachycardia syndrome: a case report

W. L. Corbett1, C. M. Reiter1, J. R. Schultz1, R. J. Kanter2 and A. S. Habib1,*

+ Author Affiliations

1Department of Anaesthesiology, Box 3094, Duke University Medical CenterDurham, NC 27710, USA

2Department of Paediatric Cardiology, Duke University Medical CenterDurham, NC 27710, USA

*Corresponding author. E-mail: habib001@mc.duke.edu

Accepted March 13, 2006.

You can read the full article for free on the net, I wander if you could email these guys and ask them if they have any info on anesthesia protocol for POTS patients!!

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Hello to nowwhat,caterpilly,Maxine and all who may have to have a colonoscopy or sigmoidoscopy some day.

Here are some of the things reported by radiologists. I think that at least some must be important enough to follow up on yet no doctor has said a thing to me. As far as I could tell, there was no mention of any type of relazant used.

Scan of abdomen and pelvis without contrast. 2009 (100 ml Omnipaque 300 was administered intravenously....I don't remember anything given intravenously. What is this?

1) There is a zone of the distal sigmoid colon where there is a combination of mural thickening, diverticulosis and mild adjacent mural thickening. The features are probably due to localized diverticular although the lumen itself is difficult to appreciate. *(What in the world can this mean?)*

2) There are several mildly dilated loops of small bowel but they are in skip areas and there is no significant thickening or other abnormality of these loops.

3) Probable focal diverticulitis in the sigmoid colon.

4) Most likely mild reactive ileus.

5) Neoplasm in the sigmoid colon cannot be excluded with absolute certainty,but is not suspected.

CT Colonography 2009 ( 100 ml Omnipaque 300 was administered intravenoiusly.) I'm guessing that this was a type of relazant??)

1) There was incomplete distension of the sigmoid colon.

2) Multiple cortical cysts in both kidneys.

3) Multiple Small amount of pericardial fluid.

I guess all I can ask is:"What if any of these conditions would cause severe pain"? I've decided to ask to delay the procedure set for Oct 5 and ask to speak with an an anaesthesiologist and request that he/she be present to monitor 'everything'.

I'm not allowed to read or get a copy of the recent CT colonorraphy so will have to write to the radiologist to send me a copy. I don't know about other countries but in Canada the reports 'belong' to whoever writes them and we have request a copy from them.

I'm still having doubts but if I can speak to the anaethesiologist I may feel better about a sigmoidoscopy.

Mary P

Well all I know is that radiologists and doctors always have 'go-arounds' and disagreement ... The MD's get ticked off because the radiologists are supposed to be "shadow-readers" only and are NOT to diagnose.......Yet they do label things and write what they 'think' - through the use of their protocols etc... Then we patients get ahold of the results - get panicky and call the MD and demand to know what the radiologist wrote and why ... To which the MD is standing there at the view box staring intently at the film saying, 'I don't see it. I just don't get it. I have no idea what he's talking about'.... And that's how it's been forever LOL.... So when I see MD's dismiss my studies ... and I ask them why -- they will give me the above speech if they are honest and say that it is very irritating to have them step out of the shadow-reader role when they have no idea about the patient or anything else... sigh.

Do not take us lay peoples advice over and above a good clinicians advice - that's the only thing I don't want to have you do.... If you delay treatment because you would do it anyway ... because you must have a few things in order first that's okay. But if you are backing away when it's only our internet forum talk - be careful...I don't want you to delay dx. and tx. if it's important not to....does that make sense?

In light of what could be painful in the above? I have the extensive diverticulosis in the entire colon - but I have that hypermobility syndrome aka EDS-HM in some circles - and it really doesn't hurt. However diverticulitis does often hurt - and usually pretty severely. My best guess for the reason for the follow up is to make sure that the thickening and such is not related to a cancer type process - an ileus probably is things got kind of slowed or shut down maybe? Sounds like they couldn't see the lumen (inside wall of the intestine) perfectly as they'd hoped. This can be for any number of reasons - ) Dunno for sure but Omnipaque sounds like a contrast or dye.... Yet just before that it says without contrast - which is weird - maybe just a typo. Some contrasts you drink - if you drank something maybe a typo? Anyway this is for the experts to deal with .... so blessings as you get the test done with safety and minimal discomfort. You may have been inflamed at the time of your last studies -- and that could have been the painful part ... Hopefully you are doing much better now :-)

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I know how you feel, due to my severe adverse reactions and hypersensitivity to all autonomic depressing and stimulating substances I had to actually have my colonoscopy and gastroscopy without any sedation and I dont mean to scare you but it was horrible, like some form of torture. But you gota do what you gota do.

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I know how you feel, due to my severe adverse reactions and hypersensitivity to all autonomic depressing and stimulating substances I had to actually have my colonoscopy and gastroscopy without any sedation and I dont mean to scare you but it was horrible, like some form of torture. But you gota do what you gota do.

Endure I'll buffer your horrid experience :-( With a good one. I do my upper endoscopy's without any sedation and do just fine -- even allowing them to stretch any esophageal strictures. For some reason I just imagine them doing what they do - sticking a tube down where food normally goes down - let them fill with air and whatever else ... pull the small flexible tube out and be done with it. Maybe it's not supposed to hurt the upper ones ... or maybe I'm just lucky. You sound pretty darn stoic or courageous or both....hope you can avoid any tests like that again!

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Anna...thanks for your help. Everything I've found relates to anaethesia and pregnant women, thus the term parturient. I still haven't tried to email the Oxford journals for info on anaesthesia and the the OI person but will do this soon.

nowwhat...You advised me to make a decision based on a good clinician's advice. However, the gastro...wouldn't give any advice and said it was entirely up to me. I see my PCP next week but know she will say it was up to the gastro to do this. I've nowhere else to turn. I've wondered also if the thickening may be related to a cancer process and all the more reason that I should go through with the dreaded sigmoid... . My mom died of colon cancer and whatever was happening to her there was a great deal of abnormal growth that made her stomach swell tremendously. Interestingly, the urogynecologist I saw for bladder problems asked if I'd ever had a problem with anaesthesia. When I said 'yes', she didn't even mention surgery. She knew I was scared and so went another route, so I think she has experienced a problem in another patient. She was much younger than any other doctor I've encountered and perhaps is more up-to-date on dysautonomia and other current conditions. I'm wondering too if my colon was inflamed during the 2000 colonoscopy. If so, it wasn't mentioned in the report but that was perhaps why there was pain from beginning to end. Overall, as a lay person, I think there are a lot of problematic areas within my colon.

Endure....you have a most appropriate name. I'm thinking that I may just try to 'endure' the sigmoidoscopy but don't know if I'll make it. I dread and fear the torture of intense pain but also dread and fear sedation so may ask for the nurse's hand to squeeze and a towel to bite down on. Maybe then my groaning won't be so intense and hard for those present to 'endure'. When I was given 'just a bit' of sedation during my virtual colonography, I felt immediately as though I were paralized and could barely move or speak.

Caterpilly...I've had several sx but never had the adverse effects of anaesthesia until I developed dysautonomia. I have since read of anaesthesia causing the deaths of dysautonomia patients but I guess no one knew how dysautonomia patients would react. I guess anyone can actually die due to anaesthesia but it scares the hec out of me when I do know what can happen.

Again, thank you all for caring and sharing. I have 2 sisters who are nurses but they don't want to talk, suggest or help in any way because they know nothing about my condition.

Mary P

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Mary P,

I'm so sorry you have been dealing with all of this. I truly know your pain, and the fear of the unknown.

The Cleveland Clinc has agreed to do the colonoscopy without sedation. It will take longer, as the procedure will need a "special touch". Dr. Burke was wonderful with me on the phone, and she said she had all of my records in front of her. She was familiar with all the autonomic nervous system issues, and in fact knows we also have a different response to pain because of this.

I'm going to be examined before this is done because I called about a lumpy area on the left lower abdomen. It comes and goes, so hopefully it's the IBS, diverticuli, of the constipation issues..... pray, pray, pray.

It's really pretty awful that these "other issues" we have are so much more complicated due to the ANS issues. My brothers have already had their colonoscopies done, and they went out to lunch right after the procedure.

Now I just have to pray I make it through the prep ok. She like to use the golytely............UGGGGGGGGG!

We'll hold eachother together Mary.... :)

HUGS,

Maxine :0)

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Mary P,

Yes that article relates to a pregnant women, I can not find any other pier reviewed article it's a pain. One of my son's is due to have his adenoids out again (yes again) and have some other work done on his nose. We have postponed this op for a couple of years now as my son has such bad reactions to even local dental anesthetic, he gets bradicardia then major tachycardia. When he had his tonsils and adenoids out at 3 they could not wake him up. We are desperately trying to find some written protocol for ANS dysfunction folk, so that we can give it to the anesthesiologist.

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Endure I'll buffer your horrid experience :-( With a good one. I do my upper endoscopy's without any sedation and do just fine -- even allowing them to stretch any esophageal strictures. For some reason I just imagine them doing what they do - sticking a tube down where food normally goes down - let them fill with air and whatever else ... pull the small flexible tube out and be done with it. Maybe it's not supposed to hurt the upper ones ... or maybe I'm just lucky. You sound pretty darn stoic or courageous or both....hope you can avoid any tests like that again!

Perhaps my doctors technique on my upper endoscopy wasn't as refined and gentle as yours because from what you describe as being "fine" is surprising to me. I too just imagined as "it sticking a tube down where food normally goes down" but it was far from it, the tube was fairly thick, size of a garden hose, instead of inserting it gently they just showed this thing right in, I was gaging and trying not to vomit and along with the air was pumped in I began to belch extremely violently, more like a combination of throwing up and belching simulatneously, it felt like my insides were trying to escape out, then my heart began to pound rapidly, not from fear but more from the procedure triggering and causing a rapid response , I tapped my doctor on the shoulder and pointed to my heart trying to indicate a rapid beat and hoping he would take the tube out, it was a nightmare. Soon as they pulled the tube out then they prepared me from a lower endoscopy of the bowels, I thought that would be better but all that air they pumped into inflate the bowels felt painful and the deeper they explored with the tube the more pain I felt.

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