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I have Brugada Syndrome, which is a genetic condition that affects the sodium ion channels in cardiac tissue. To prevent sudden unexpected death, I have an imp
by Perenti 6y ago
I have Brugada Syndrome, which is a genetic condition that affects the sodium ion channels in cardiac tissue. To prevent sudden unexpected death, I have an implantable defibrillator. Every few years I get upgraded, sometimes leads fail and need to be revised as well.
General anaesthetics are dangerous for Brugada patients, so most of the surgery is done under local anaethetics. I have to tell the surgeons when I can feel pain, so they can put a bit of local where it's hurting. Given how "special" the sensations are when they get to a bit where there's not enough numbing, I can only imagine what it must have been like before modern anaethesia.
My last procedure was in March this year, and involved a lead revision, a defib upgrade and moving the unit deeper into my chest. Surgery lasted 3 and a half hours, so numbing wore off during the surgery. Not a lot of fun.
- rscho 6y agoNext time, I suggest trying to ask for a locoregional anesthesiologist to perform a pectoral block. Long-lasting local anesthetics work far longer than 3.5 hours, and no reinjection required. They might refuse due to fear of toxic dose, but worth trying.
- Perenti 6y agoUnfortunately, they have to use absolute minimal doses of locals as well, as they also increase cardiac arrythmias in Brugada patients, especially those of us with very distinct type I Brugada ECG patterns. It kinda sucks, but hey, despite many cardiac episodes (my first VF was at 14, and I'm 58 now) I'm still alive. And I'm a cyborg.
- rscho 6y agoI understand and I agree. Another thing you might try is hypnosis or autohypnosis. It works pretty well for that kind of thing. Besides, that would also allow the anesthesiologist to give you efficient painkillers and sedation that does not interact with sodium channels. However, I think you would find the cumulative dose of 3.5 h of intermittent lignocaine injections surprisingly high. And let me assure you that they have absolutely no idea of your true lignocaine plasma level. The comparative peak with long-lasting drugs will likely be much lower. All in all, I guess my main point is that if by chance you're doing that without an attending anesthesiologist you should try to ask for one and you might find it far more comfortable. You probably already know this, but: https://www.google.com/url?sa=t&source=web&rct=j&url=http://www.orpha.net/data/patho/Ans/en/Brugada_EN.pdf&ved=2ahUKEwiZoK6mgq3qAhVBs4sKHT7ND3kQFjABegQIAxAB&usg=AOvVaw0AJykZAmSc77mOGJ-ILKJk https://www.google.com/url?sa=t&source=web&rct=j&url=http://...
- Perenti 6y agoYeah, I did know most of that. But a nice summary anyway. One big difference is that they monitor me with 7 (in the ward) and 12 (during surgery) lead ECG, not 5. Fortunately, being in Australia where there is universal health care, I have an excellent team working with me. Typically in the Cardiac Catheter Laboratory there's the Professor (surgeon), a cardiac aneathetist, several registrars and students, several nurses, a technician from Biotronik, and a cardiac scientist. They use absolutely minimal doses of lignocaine, based on my reporting pain levels during surgery. They do give me a very small dose of propofol during the test at the end, when they induce VF and AF to test the unit. I'm told this is much less stressful than being awake while fibrilating and being shocked (twice). I know that going into VF and AF feels bloody aweful, and syncope often results in nasty falls, so being knocked out for that makes sense. I did break my arm once when shocked though - those stainless steel tables are bloody hard! I know a patient in the US who had a bill for $145k after getting his ICD. I on the other hand pay nothing, except a lifetime of higher taxes than Americans pay.