Guest guest Posted January 2, 2004 Report Share Posted January 2, 2004 Mark Me again. Something I forgot about until Alice's post. If you use a C-PAP or biPAP, ask if you should take them. I used mine last year and it was so much better than having them use an ambu bag. I also used my inhaler as I was going into the OR. laurie > > Reply-To: > Date: Fri, 2 Jan 2004 09:19:44 -0700 > To: < > > Subject: Propofol > > I want to add a piece of information here based on my own experience with > propofol. We did check with Dr Cohen on this prior to my surgery and checking > with a mito specialist on this is an absolute must. > > Dr Cohen advised that for a short surgery (under 3 hours) propofol could be > used. I've had two CI surgeries which were both under 3 hours and both times, > we did use the propofol. These two surgeries were the easiest on my body of > any I can ever remember. I woke up in recovery so much easier and was able to > get up and around far sooner than any other time. > > We do have Malignent Hypothermia in our family and anesthesia issues. I have > experienced some of them myself and remember the horror of nurses standing > over me screaming at me (when I could hear) to breathe - You have to breathe > Mrs . That did not happen with the last two surgeries using propofol. I > actually have to say that I prefer this in a short surgery. > > I'm not trying to confuse things here - just felt that my experience with > propofol was worth mentioning. I know I have one grandson who cannot tolerate > it at all. I also have one granddaughter who reacted to it the same way I do > and her brother is the one with the diagnosed MH. > > Alice > > When I had my surgery a year ago and met with two different > anesthesiologists, I was told that propofol was used because people didn't > get melignant hypothermia. Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2004 Report Share Posted January 2, 2004 My CPAP accompanied me to the hospital as well, Laurie. Alice > Mark > > Me again. Something I forgot about until Alice's post. If you use a C-PAP or > biPAP, ask if you should take them. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 When I had my EGD done in October they uses propofol. I didn't realize until a couple hours later when I was was reading about contra-indicated drugs from the mito files that I wasn't supposed to have had it. Actually, I was quite pleased with it in that I came out very quickly with little side effects, and actually, the normal soreness and stasticity of my muscles was much improved for a while even though it was only for a few hours! I am going to need to have a colonoscopy done soon and I am hoping that if they use propofol again I will have the same good results. I will of course, let them know that I am not supposed to have it just so they are aware of the possible complications! -swim lady Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 Just wanted to add my experience with propofol. I've had excellent outcome with it not causing any probs with EGD and pyloric dialation and getting my gallbladder taken out. Also its been used for minor gyno surgeries and no probs. I did have it for my muscle biopsy and had alittle problems with breathing (sats were in the upper 70's and 80's some of the time they used some sort of thing to help me breath and that helped as I got out of the anesthetic state) also my heart rate was high for the first few mins coming out I found out- but not much higher than it usually is- I have tachycardia as is and it went from the usually 120's to upper 130's for a bit.) I believe alice is right about for shorter surgeries it can be ok. I believe the only reason that I had issues with it for the muscle biopsy is because that was my latest surgery and I think my respiratory muscles are weaker and dysautonomia has gotten worse. 2-3 yrs ago, I probably wouldnt of had issues. Definitely talk with the anesthesiologist about this and if you can find one that deals with people who have probs with anesthesia that would be great too. If they dont know enough, have them talk to one of the mito specialists. keep us posted on what happens. take care, adrienne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 thanks Laurie... They were rather rude and abrupt with me when I told them about the Mito problems and asked me whther I wanted to just forget the whole thing and go home or go through with it since I was already there. they didn't even want to hear about any precautions! I sota hoped that something would happen ust so I could say "I warned You!" Nothing happened and when the results of the EGD were negative, the doctor just said "well, whatever is wrong with you must be from that weird disease". Now they want to look up the other end! I'll try the twilight sleep! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 Adrienne It is my understanding that it isn't the problems that happen at the time of the surgery, but the damage it can cause to the mitochondria, thus making symptoms worse in some. I found it a nice anesthetic when I came out of it. This was before my diagnosis. I try to stay clear of it as a short surgery can become a long one as I found out with my shoulder surgery. laurie > From: moonchild62579@... > Reply-To: > Date: Sat, 3 Jan 2004 18:48:46 EST > To: > Subject: Re: Propofol > > Just wanted to add my experience with propofol. I've had excellent outcome > with it not causing any probs with EGD and pyloric dialation and getting my > gallbladder taken out. Also its been used for minor gyno surgeries and no > probs. I > did have it for my muscle biopsy and had alittle problems with breathing > (sats were in the upper 70's and 80's some of the time they used some sort of > thing to help me breath and that helped as I got out of the anesthetic state) > also > my heart rate was high for the first few mins coming out I found out- but not > much higher than it usually is- I have tachycardia as is and it went from the > usually 120's to upper 130's for a bit.) I believe alice is right about for > shorter surgeries it can be ok. I believe the only reason that I had issues > with it for the muscle biopsy is because that was my latest surgery and I > think > my respiratory muscles are weaker and dysautonomia has gotten worse. 2-3 yrs > ago, I probably wouldnt of had issues. Definitely talk with the > anesthesiologist > about this and if you can find one that deals with people who have probs with > anesthesia that would be great too. If they dont know enough, have them talk > to one of the mito specialists. keep us posted on what happens. > take care, > adrienne > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 I have had all my EDGs and Colonoscopies done with just twilight sleep using Demerol and Valium. For me there is no recovery time as I am able to sit up and do paperwork after leaving the table. I know that I am a little strange in this department, but wanted to let you know that they can be done with twilight sleep. laurie > From: swimdel1@... > Reply-To: > Date: Sat, 3 Jan 2004 18:00:18 EST > To: > Subject: Re: Propofol > > When I had my EGD done in October they uses propofol. I didn't realize until > a couple hours later when I was was reading about contra-indicated drugs from > the mito files that I wasn't supposed to have had it. Actually, I was quite > pleased with it in that I came out very quickly with little side effects, and > actually, the normal soreness and stasticity of my muscles was much improved > for a while even though it was only for a few hours! > I am going to need to have a colonoscopy done soon and I am hoping that if > they use propofol again I will have the same good results. I will of course, > let them know that I am not supposed to have it just so they are aware of the > possible complications! > > -swim lady > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 I have had all my EDGs and Colonoscopies done with just twilight sleep using Demerol and Valium. For me there is no recovery time as I am able to sit up and do paperwork after leaving the table. I know that I am a little strange in this department, but wanted to let you know that they can be done with twilight sleep. laurie > From: swimdel1@... > Reply-To: > Date: Sat, 3 Jan 2004 18:00:18 EST > To: > Subject: Re: Propofol > > When I had my EGD done in October they uses propofol. I didn't realize until > a couple hours later when I was was reading about contra-indicated drugs from > the mito files that I wasn't supposed to have had it. Actually, I was quite > pleased with it in that I came out very quickly with little side effects, and > actually, the normal soreness and stasticity of my muscles was much improved > for a while even though it was only for a few hours! > I am going to need to have a colonoscopy done soon and I am hoping that if > they use propofol again I will have the same good results. I will of course, > let them know that I am not supposed to have it just so they are aware of the > possible complications! > > -swim lady > Quote Link to comment Share on other sites More sharing options...
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