I had my prolactinoma removed on Tuesday. It was such a hard decision to have surgery, and I was so nervous, but everything has been going smoothly so far. Some complications can arise several days/weeks after surgery, so I'm not officially out of the woods yet, but am taking care to rest a lot and fingers crossed that things keep going well!

The surgeon was able to remove about 98% of my 5 mm tumor. A very small piece of it was too close to the carotid artery to safely remove. The good news is that he removed the part that was pressing up against the pituitary gland, which was what was most important. B/c there is a little piece left, there is a chance that it could start regrowing again after a few years. So, what that means is that I have to monitor my prolactin levels for the next 10 years. If they start going up, then I can try the meds again (maybe they will work this time since the bulk of the tumor is gone), or can do gamma knife radiation to prevent the tumor from growing any more. If my prolactin levels stay normal for 10 yrs, then I'm considered "cured." Either way, though, doc says tumor shouldn't regrow for at least a few years, and if it does, it probably won't be as big or cause as much problems as before.

Recovery has been ok so far. I spent a little more than 24 hrs in the hospital. The first few hours after surgery was akin to having a bad case of the flu--headaches, nausea, and nosebleeds, but they treated me with good drugs. Not pleasant, but tolerable. Now I am home and am just really tired. Having trouble sleeping for more than a few hours, and still need to take meds for my headaches, but overall feeling pretty good. Went for a walk in the park yesterday. Felt good to stretch my legs, although i was pretty wiped when I got back.

I underestimated how exhausting the surgery would be not just on me, but on my family too. I think they went through quite the emotional roller coaster earlier this week, and my husband looks exhausted! We were both skeptical that he would need to take more than a couple days off of work, but we're now very glad he took the full week off, and actually are trying to see if he can take some more time off. I'm not really able to do anything around the house, and it is a lot of work taking care of someone else plus the household all by yourself! We don't have kids (yet), and realize that this is just a glimpse into what it will be like to take care of kids. Newfound respect for how hard parents must work!

I still need to watch out for signs of diabetes insipidus, stroke, spinal fluid leak. It's hard not to get paranoid about every single headache or nasal drip, but so far and managing to stay (mostly) sane. I'm not used to just sitting around all day, and I keep catching myself trying to do things when I should be resting. I'm trying to be good and rest, to help avoid complications, though.

No word yet on my prolactin levels, which they checked the morning after surgery. Ideally they will be zero.