nantynannie Posted August 12, 2004 Report Share Posted August 12, 2004 Hi Everyone,I thought that this was important information to share, though it might not pertain to everyone, or maybe you already know this...my neuro and dysautonomia specialist told me yesterday that under no circumstances (short of life threatening emergency) should I ever have general anesthesia. I am supposed to have surgery (fusion on my neck) but she said absolutely no way.Anyone else heard of this? I think that we should all know that we should not have general anesthesia, maybe I am the only one who did not know?Ann Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted August 12, 2004 Report Share Posted August 12, 2004 Ann, I'm unaware of any special reason why we shouldn't have general anesthesia. I've had two spinal fusions, I've had my gall bladder removed, sinus surgery, and a number of other procedures, all under general anesthesia.I was told by Dr. Grubb (a specialist in autonomic disorders) that it was fine for me to have general anesthesia as long as I was monitored as they would any cardiac patient.Nina Quote Link to comment Share on other sites More sharing options...
purplefocus Posted August 12, 2004 Report Share Posted August 12, 2004 My pcp whom is not a specialist of dysautomonia but he knows alot about it and if he doesn't know he would find someone that does. Anyway he told me it would be fine to have an elective surgery that I had been wanting for some time which will require general anesthesia, he even refered me to the surgeon. I point blank asked him would the anesthesia be a problem, he said that the only different is they will probably put in an arterial line to monitior my bp internally. Paige Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted August 12, 2004 Report Share Posted August 12, 2004 Paige, I had an A-line for each of my surgeries--it's more than just for allowing them to monitor your pressure--it allows them to do a high volume infusion to bring your bp up if it suddenly drops.Nina Quote Link to comment Share on other sites More sharing options...
purplefocus Posted August 12, 2004 Report Share Posted August 12, 2004 Nina, Thanks for that information. I knew that there was something else to do with it but I wasn't clear on what it was. Paige Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted August 12, 2004 Report Share Posted August 12, 2004 I also can't imagine why general anesthesia would be dangerous for us. I'd be very interested in hearing the explanation! I had to have general anesthesia when my daughter was born via c-section, due to abruption. B/c I hadn't had an epidural and they had to move fast, they put me under general anesthesia. ( I had POTS but was undiagnosed). Anyway, I had no reaction to the anesthesia. I think it was the SURGERY that my body responded to. This is what my POTS doctor has warned me about--not that it is life-threatening, but just that we dysautonomics are highly sensitive to surgery, like we are to most any stress (but surgery is super stressful to the body), and he has seen most of his patients have an increase in symptoms for some time following surgery. We are also often sensitve to epinephrine and for that reason it should be avoided for use in local anesthetics.Katherine Quote Link to comment Share on other sites More sharing options...
nantynannie Posted August 12, 2004 Author Report Share Posted August 12, 2004 Hi Everyone,I did not ask for much of an explanation, but she did say that for me (and I assumed others) my nervous system was too unpredicatble and things could go awry with BP and HR. Also, she said that I would be very sick for a long time after the surgery.Now I wonder...maybe this is just her own personal opinion, or just for my own case and not others. I don't know, but thanks for the input!Ann Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted August 12, 2004 Report Share Posted August 12, 2004 We have a couple of links regarding anesthesia and OI on our links page:http://www.dinet.org/links.htmHope this helps.Michelle Quote Link to comment Share on other sites More sharing options...
justme Posted August 12, 2004 Report Share Posted August 12, 2004 My wife is hit and miss with anesthesia. There was one time (when we were just friends) that I made it clear to the hospital staff that she was sensitive to anesthesia. The proceeded without precaution and it almost killed her. She has had surgery since and we have notified the doctors about her conditions and sensitivity. They took some extra precautions and monitored everything a bit more closely. She didn't have any issues. Of course, we are married now, so they may have been more apt to listen, but I think the hospital staff was much better this time around.I'd say that it shouldn't be a problem and you should not avoid necessary surgery. Just make sure your doctor, surgeon and anesthesiologist are well aware of your conditions. Quote Link to comment Share on other sites More sharing options...
SV_Dad06 Posted August 12, 2004 Report Share Posted August 12, 2004 My daughter has POTS and had surgery in June with no problems.Our Cardiologist spoke with the Surgeon. They had her come in and start an IV 4 hours before surgery and for 4 hours after to help.She had no problems with the surgery. The Doctors should talk before hand to insure the surgeon knows the situation. Quote Link to comment Share on other sites More sharing options...
blackwolf Posted August 12, 2004 Report Share Posted August 12, 2004 I have to be very careful about what kind of anesthesia I get. The hospital here in town has a combo of drugs I can take. Once I also nearly died because of a mixup in Doctor orders, luckly, the Doc caught it before I completely crashed.If you can, talk to the An. Doc themselves, not your surgon, they don't always take the same precautions.Blackwolf Quote Link to comment Share on other sites More sharing options...
Ling Posted August 17, 2004 Report Share Posted August 17, 2004 My last surgery a few weeks ago was horrible. My first problem was dying of thirst for days afterwards. I could just not get enough water in. The pain I experienced was worse than under "normal" patients. My bladder didn't work for a day after the operation and my legs were dead for a week and a half. I had so much pain that I was drunk from it. Not going to hospital in a hurry again. What I was grateful for was that my Gp was in theatre with my gyny and she is just fantastic. If she is in a room I know I am in good hands. They monitored my heart closely and blood pressure. Without her I would have been petrified. She truly goes out her way to understand, study and advice me as best as possible. Her hands are tied if you think about it. But she is just FANTASTIC. Quote Link to comment Share on other sites More sharing options...
lisamac Posted August 19, 2004 Report Share Posted August 19, 2004 hello my son does not do well with any type of anestesia . he went to the dentist and became very ill for about 12 hours . when he had his pacemaker put in it took him 6 hours to come out of recovery and had respiratory problems.he is going to have his tonsil and adenoids removed on nov 15. he will be sent to children's hospital for that .we do not have the resources for him at our hospital . it is really scary not knowing how he will this time lisa Quote Link to comment Share on other sites More sharing options...
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