Advice When Needing To Be "put Under"

[Friedbrain]

I don't know much about the different anesthesias used for putting dysautonomia patients under for procedures, so I could really use some advice. My only experience that even comes close was at the dentist's office for root canals.....and it was a near-disastrous experience during which I learned that I *cannot* be given the numbing agent that contains epinephrine!! I thought I was going to have a seizure right there in the chair (since then, they only use the stuff without epinephrine, which of course doesn't last through the entire procedure).

A year ago, a GI doc wanted to do an upper endoscopy to see why I had swallowing problems. When the problems went away (because most of my problems come and go), I canceled. I was nervous about being put under, and it didn't seem worth the risk. Well....went back to a GI yesterday for a gastro problem, and mentioned the last time I'd seen a GI doc (trying to share my health history, NOT complain about swallowing problems which, in my world, is but a minor annoyance, really).....but the doc decided he wants me to get both an upper endocscopy and a colonoscopy! Upside I can see is that they'd both be done at the same time so "what the heck", BUT huge downside is that I'm scared to death of the risks of going under with my health problems. The nurse confirmed that I would have to have it done at a hospital, not that that makes me feel any better (if anything, confirms my concerns!).

I'm an alphabet soup of medical diagnoses, as most of us are....with the main ones being seizure disorder, adrenal insufficiency, and dysautonomia. The doctor said they use propofol here; my research on the internet said there are numerous choices for anesthesias. Any suggestions about drugs to further look into would be appreciated. I'm still not sure I will even consent to the procedures (if I can avoid a full colonoscopy-although I have a family history of c.cancer, and am half-way to 50, so it's probably in my future if not now-I think I'd rather continue skipping the endoscopy and continue to not worry about the swallowing problem, thereby avoiding being put under right now).

(and it's not that I'm NOT concerned about swallowing problems but, rather, that I'd assumed it was neurological in nature and therefore not something that would be helped by a very invasive test such as an endoscopy. I could be wrong, though, which is the ONLY reason I didn't flat out say no again. But, also, it's not something that affects me In The Moment-which I'm sure the nurse didn't get- as much as dizzy spells and crashes....and I'm trying to prioritize and focus on the most immediate needs)

Thanks for thoughts!

[julieph85]

I'm sorry I don't have more advise but I also need endoscopes done and I won't do it for the same reasons. However the dr I saw at mayo said I would be fine and he recommended propofol

[Clairefmartin]

I'd like to hear thoughts on this too - I'm supposed to get scoped as well, I think my esophagus is fried and they need to check the pH of my stomache, but I'm scared of sedation and being put under.

Sorry to offer no help, but know you are not alone

[icesktr189]

If you do a search about anesthesia there are a TON of discussions

[Serbo]

Hi All

I have had 2 endoscopys, both without sedation/anasthesia.

It's not actually that bad without it, the unpleasant bit is getting the scope beyond the gag reflex, but that takes a few seconds and then you just have to wait for them to get the tube out. They numb the back of the throat with a spray which helps the gag part anyway. I had 8 biopsies while they were in there, you don't feel them, and they're done in about 5 mins.

You will tons better and more relived having had it done.

Cant say about colonoscopy as not had that.

[Clairefmartin]

Wow Serbo - you are my new hero! That's hard core!

[hilbiligrl]

During years of being sick, i have been put under a few times....... (first 2 times were, 1. when i was 3 to have a tumor removed from left breast.... not sure how i done but from what mom tells me, it was a very traumatic experience for me...... i had no known illnesses, nor this illness at the time that i know of...... 2nd surgery was to sew my tongue back on at the age of 7... i had walked into my brothers path of him swinging and he kicked me in the mouth, i bit my tongue off..... mom had to find an oral surgeon to sew it back on...... not sure of all the details, but have no idea how i done with the anesthesia back then)

ok.... surgeries after illness started: 1. to get a tubal ligation..... but i had no idea what disease i had at any of these times. The effects of the anesthesia to the tubal: wen waking i could not breathe, but kept coming in and out of conciousness.... i was scared and kept asking 2 nurses beside me why i couldn't breath..... they said, 'i don't know, we've never heard that before' and then they kept on with their conversation. For about 2-3 hours i was left there alone, in and out of waking up, and trouble breathing..... i hated that and was angry with the nurses not doing anything about it. I was mildly symptomatic at the time. but that breathing issue had me scared bad. And oh, i noticed that after this surgery... i had constant back to back migraines with blinding auroras for a good few months.... i figured it was a mixture of the epidural, pain meds, anesthesia, the whole birthing process and all......

Surgery #2 during sickness: tonsils taken out..... under for 45 mins..... done absolutely fine coming out of anesthesia..... no probs whatsoever..... i was mildly to somewhat severe symptomatic during this time. (but i had told them about my breathing issues coming out of that anesthesia during that tubal ligation and they said they would make sure it didnt happen..... and it didn't) done great!

surgery #3 breast augmentation and abdominoplasty (breast implants, tummy tuck, all done at the same surgery in 2008). Under for almost 5 hours..... i was mildly symptomatic at this time and would have considered myself to have been in a small remission type period, with very mild symptoms going on..... i was also in college at the time and was working in a pharmacy too..... i was having health issues, but they were mild and would wax and wane..... but i was well enough to feel withhin myself that i wouldnt have any issues with this surgery. I done WELL...... all through surgery and afterwards.... had easy time waking up.... no problems whatsoever..... even in recovery the next 2 weeks.... all went well.

Now that i am very ill..... im not so sure how i would do under anesthesia..... so, i am eager to hear other responses as well..... as in the near future i may have a colonoscopy and a light from the other end as well......

hope that sheds some insight and possibilities

tennille

[puppylove]

Ask for nausea medication before you go under if you already have stomach issues- it really helped me with that part of it!

[hilbiligrl]

Oh yea... i forgot.... they prescribed me the transderm scop patch to place behind my ear... i think i put it on a day or two before my major surgery and kept it on for a good week, but i think i changed it every 3 days (i can't remember)..... with that, i didn't have ANY issues with nausea and vomiting at all!!!

[Serbo]

Wow Serbo - you are my new hero! That's hard core!

honestly it's not that bad. with the gag there is an urge to grab at the thing but it lasts about 3 seconds and then there's no discomfort really. I was in and out of the centre where they did the last one in 3 quarters of an hour.

Interestingly i noticed when they move the camera in different area it stimulates the vagus nerve in different ways and speeds up/slows heart rate, gives you an appreciation of how refulx and digestive problems affect the heart!

[Dizzysillyak]

I was knocked out for my last 2 scopes and didn't have any problems. But, the first two scopes I had

were nightmares. The doc didn't knock me out good enough, so I kept waking up and I felt the tubes both ways.

These were both very painful. I had fibromyalgia 24/7 at the time of the first one tho so my pain

receptors were already alert.

I haven't had any procedures since having a two hour seizure in march so I don't know what to expect. A fasting blood

draw triggered pre seizure activity last month ... I'm assuming they'll just give me klonopin, etc

prior to avoid a seizure.

Tc .. D

[jackiemxoxo]

I have had an endoscopy before which showed bad gastritis and suggestive celiac and I end up getting my gallbladder removed which i probably did not need to but it was not working due to the dysautonomia. Having been put under for both of these procedures wreaked havoc on my body because it slows everything down and made me feel worse. After recovering, I was still having major stomach issues so the GI doc recommended the same thing for me another endoscopy and colonoscopy. I decided to wait it out because I did not want to be put under and switching to a gluten free diet helped my symptoms. The GI doc was very knowledgeable though and suggested prophfol(sp?) as well which I think if you decide to have this done is the way to go. However, if you are just having swallowing problems try to see if they can figure out what is wrong with a barium swallow test or possibly the gastric emptying studying (these are what diagnosed my gastroparesis when i had it, I could not eat anything solid for 3 months). Also, you might want to research that camera pill you swallow which is similar to an endoscopy but you do not have to be put under. I was trying to go that route because I was too afraid of being put under as well. Well that is input on this topic and hopefully it helps. I can really relate to not wanting to be put under and hopefully you find what will work best for you.

[songcanary]

I have had two endoscopies and two colonoscopies. I was given Versed and Demerol during the uppers, and I think the same for the lowers. I was also premedicated for nausea during the most recent endo. The nurse said they do that routinely now. I didn't have any problems during or after any of these. I think the anxiety is the worst thing, really. However, I do not have POTS, I have OH. I don't remember any of the procedures and was home in just a few hours. I sure hope that's true next time because I'm due for another colonoscopy this spring, yippee!

[Katybug]

I have had 2 endoscopies and a colonoscopy (at the same time as 2nd endo) in the last 4 yrs. At the times, we didn't know I had POTS so I was given the standard anesthesia and had no adverse effects and was completely out. In fact, I usually feel better for about a day or so after anethesia (I think it is a similar reaction to when I take my Belladonna script...it's like it suppresses my nervous system enough to feel normal). The only part that was difficult for me was the prep for the colonoscopy brought on a bout of my uncontrollable diarrhea and abdominal pain. The doc was concerned that may happen along with concerns about dehydration so he had them give me fluids longer than what would be normal in recovery and sent me home with the Belladonna script which took care of the problem.

[Friedbrain]

Thanks for the quick feedback! It sounds like sometimes it's okay and sometimes it's not.....but that anti-nausea meds help and propofol sounds like a possible option. And that it's possible to do without any at all, if I can tough it out (er.....!).

The doc does want a barium swallow before I go in for the endo/colono, which is fine. I actually had that done in the hospital 9 ys ago (when swallow probs first started, and it was abnormal. Since I've lived a long time with it coming and going, you can understand why it's not a high priority).

And, fwiw, when I said I was "half way to 50", I meant that I'm 45 (obviously, cognitive function is already going...).

Thanks!

[Troy]

I've had one endescopy, one colonoscopy and one sigmoidoscopy all without anesthesia or any numbing agent. The endescopy was the worst out of the 3, when they were pushing the tube in all that air escaping was making me gag and burp lik crazy. I constantly wanted to vomit and the force of the air gave me real bad tachycardia. The colonoscopy wasnt as bad but it was painful , especially when they pumped up my colon with air and the deeper they went in the more pain I felt. The sigmoidoscopy was the least painful as they use a more flexible tube and they dont go that far in but right at the last minute my doctor did a technique where he rotated the camera to look back on itself and to do that he had to push against my colon wall, soon as he did that I felt pain and started to bleed. I suggest getting sedated if you can but because I am so sensitive to chemicals I had to go through with it without anything.