One-off sedatives - OK for PWME or not?

[Sasha]

I may have to undergo a procedure soon where it's usual to be given a sedative (I don't know what kind).

I'd like to be able to take the sedative but is it likely to give me any particular problems, given my ME and delayed OI?

 

[Bob]

I had my wisdom teeth out under sedation, and I didn't have any problems (during or afterwards) except that I was probably over-sensitive to the dosage because I was pretty much out cold during the operation. But I don't have OI, and so we might react to things differently. And my ME was in a relatively good place at the time.

 

[SOC]

Advice for PWC's Anticipating Anesthesia or Surgery

This is from the Hunter-Hopkins Clinic -- Dr Lapp and Black. I don't agree with it all, by any means, but the bit about anesthesia are useful

 

[Sasha]

Thanks, @SOC - that's thorough! I can send that to them ahead of time.

 

[SOC]

Thanks, @SOC - that's thorough! I can send that to them ahead of time.

Just be aware of the bit where it says PWME are not immunocompromised or more susceptible to opportunistic infections. It's probably irrelevant to your procedure, but if you send the whole document to the docs, it might get in your record.

 

[Sasha]

Just be aware of the bit where it says PWME are not immunocompromised or more susceptible to opportunistic infections. It's probably irrelevant to your procedure, but if you send the whole document to the docs, it might get in your record.

I agree, that's a pretty ridiculous statement! Good idea, I'll just give them the stuff about the sedatives.

 

[eafw]

(I don't know what kind).

It is probably worth trying to find out, the hospital or whoever is doing the procedure should be able to tell you so you can work out if it is a generally better tolerated drug, or if you get a choice.

They also should be titrating the dose for you rather than just giving a "standard" amount, again they should tell you this if you ask.

Also bear in mind recovery time. I had dental sedation a couple of years ago with midazolam and was fine - apart from it took me ages to come round even from the tiny dose they had given me. Most people were walking out, I couldn't stand at all and had to be wheeled out.

 

[Apple]

I've had midazolam twice. The first time, I was 'fine' afterwards though it took me 2-3 weeks to properly recover (though this could've been more to do with the actual procedure plus anxiety/stress + the length of time in hospital etc). No major long lasting problems though.

2nd time I had it, I couldn't walk at all. My legs were like jelly but this wore off after i'd had an hours sleep and i recovered within my usual timeframe (a week or so).

All in all, no long lasting problems, I don't know how sick you are but you can probably expect to be wiped out for a little while. Far better than a general anesthesia though.

Best of luck with your procedure.

 

[Sasha]

Thanks, @Apple - not much of me at the moment and I don't think I could cope with being wiped out any further. Thinking I might have to do without the sedative.

 

[SOC]

Thanks, @Apple - not much of me at the moment and I don't think I could cope with being wiped out any further. Thinking I might have to do without the sedative.

A while ago when I had to have some relatively minor surgery (although technically they called it "major surgery", for their own ineffable reasons). I went to great lengths to meet with the anesthesiologist and have him talk by phone with my specialist about the unique situation of PWME. In the end, the anesthesiologists ignored everything my specialist told them because, "Come on, we give anesthesia to emergency car crash victims just fine and that's way worse than what you have, so let us decide what you need." It took me several months to recover, not from the surgery, but from the anesthesia.

I complained to the surgeon about this and told her that I'm not doing the surgery again if the situation arises because the cure was worse than the problem. I was spitting mad when she said, "Oh, well we don't have to do that surgery under anesthesia. We could just do it with a local." Funny, that's not what the anesthesiologist told me when I asked about that.

From now on, I'm choosing to do without the sedatives when I can. Obviously, some surgeries do require the whole bag of tricks, but for minor stuff I'd rather cope with the immediate discomfort rather than months of ME crash.

 

[WillowJ]

I've had general sedation a couple of times. Once felt weird when starting the sedation and when waking up. Other time it went as expected. I liked the doc/situation better the second time when it went better. I don't recall what drugs were used, sorry.

 

[Sasha]

That's awful, @SOC!