I had thoracic surgery to remove my thymus almost a month ago and a lot has happened since then.
I was very nervous going into surgery, not because of the surgery itself but because of two anesthesia complications introduced by the tumors. First, since having pituitary surgery last year, I am not able to make large amounts of cortisol on short notice for stressful situations such as a major surgery. Therefore, it is necessary to receive steroid “stress doses” to avoid adrenal crisis during surgery. Second, a carcinoid crisis, whereby neuroendocrine tumors can secrete toxic levels of hormones when the body is exposed to stress, can also be triggered by surgery. Adrenal crises and carcinoid crises can each be fatal if not treated appropriately and swiftly. And neither are very common, so given both were issues of concern for me, I was very nervous about whether anesthesia was going to be prepared. I printed off materials and took them to the pre-op appointment that documented the drug protocols I hoped would be followed to help things go smoothly. The anesthesiology resident I saw at the appointment was beyond excited. So many interesting and unusual problems all in one person (I am also missing the enzyme required to process a family of paralytics used in surgery in addition to the endocrine problems). She informed me I covered several of those rare cases that show up on medical exams but doctors never actually get to see in practice. As a result, she also understood why I wanted to make sure all the right protocols were followed.
I knew I wasn’t going to be able to relax completely until I talked to the doctor that was going to be overseeing all of this the day of surgery. So as M and I packed up to go to the hospital the morning of surgery, I triple checked we had all the protocols with us just in case I was going to have to argue with someone about it that morning. I was put at ease as soon as I met the team that morning. The nurses in the pre-op area told me I was the “patient of the day” and that my case had been the major topic of discussion all morning and that all sorts of special preparation had been taking place. Teams of doctors and medical students were walking by and commenting “that’s the carcinoid patient” and pointing at my bay. The anesthesiologist on my case specialized in complex cases as well and he spent a lot of time with me. We discussed the protocols in detail and he ensured me that he not only had devoted his entire morning (my surgery was at 11) to my case, but that he spent the prior evening studying up on it as well. Infusions of octreotide and solucortef (the drugs used to prevent carcinoid and adrenal crises, respectively) were going to be started before surgery and continue through to the day after surgery. Extra IV lines – arterial and central lines – were being put in place in case I did go into crisis and needed large amounts of fluids fast. After hearing all this, I could relax. I felt like I was in good hands.
Arterial lines are not a big deal, but because (as the name suggests) they go into the artery, there is a bit more of a production getting them in (and they are definitely more painful and messy!). The anesthesiology resident first attempted to place the line but didn’t succeed. So an ultrasound machine was brought out so she could try and guide the IV in to the artery with a better view. This didn’t work either, so the attending anesthesiologist was brought back. He tried a third time, also using the ultrasound to try and guide it in. At this point, I am uncomfortable and ready to have this over with, but calm – it is certainly not the end of the world. But the anesthesiologist looks over at me and stops and starts asking me if I am ok. I told him yes, totally. But I have apparently become very red – of course the stress has made me start flushing, which I am used to by now but he isn’t and it has freaked him out. He keeps asking me, over and over, “do you feel ok?” and I keep saying yes. But he immediately stops trying to place the line, announces “we are giving her a break” and cleans up and leaves the room. He is pacing around about 30 feet away and looks stressed. Everything gets put on hold for about an hour. I haven’t seen M for a few hours now and now I am calm but afraid. The fact that the tumor is acting up before we even get going is worrying me. It’s hard having so little control over what your body is going to do. I just want to see M for a few minutes before I go in, but given the flurry of activity, they want him out of there until they are ready.
I finally get to see M and return to a normal color and off I go.
Surgery went very well. There were no complications – which I credit completely to a very well prepared team of doctors. I have to say, having dealt with my share of incompetent and/or uncaring doctors over the past few years, I can recognize and appreciate a competent and caring team when I see one. The thymus and all surrounding tissue was removed. The surgeons looked at the nodule in my lung and determined it looked like a lymph node and decided to leave it in there. They did not see a clear tumor in the process of removing my thymus, but the entire specimen was sent to pathology.
So the big question post-op was whether the surgery caused the carcinoid syndrome to go away. The answer, as usual, was not black and white. My coughing and wheezing went away completely, even when I stopped taking anti-histamines. My flushing and diarrhea did not go away. The pattern of flushing did change – it is more pink than purple and more diffuse than before. But it is still there and still triggered by the same things.
At this point, my best guess is that this means my thymus had to come out and removing it fixed some but not all of my problems. For now, I decide to focus on recovering from surgery and to just wait and see how my symptoms evolve, what the pathology report says, and what the surgeons have to say when I see them in a few weeks’ time.