I am finally getting to this post. Recovery was a little rougher than I anticipated but I think I'm finally starting to come around. I went in for my surgery early December 10th morning. They told me to be there by 5:45am. I got all prepped and they took me back around 7:30am. They told my husband it would be about an hour-long surgery. I was told the surgery went very well. They were able to go in and get enough tissue of the lesion for the biopsy while still preserving the pituitary stalk. According to the the report, the lesion involved the whole stalk so I thought that was pretty impressive. They then cut a small incision in my stomach and took some fat so they could patch the hole they had made in my head. At some point, they also did a lumbar puncture but I'm still not quite sure when or why. I just noticed my back hurt after and that's what they told me. My resting heart rate normally sits in the 40s which is low for the average person. During the surgery, my heart rate dropped down into the 20s which they don't like too much. According to the report, it happened while they were patching the hole with the fat graft. I overheard the anesthesiologist talking about it as I was trying to wake up. Apparently he gave me something and it resolved after they readjusted the graft. My husband told me the surgery ended up taking about two hours.
After I spent some time in the recovery room, they finally took me down to my room in the ICU where my husband was waiting for me. It was almost noon by that point. I had the worst headache and kept needing to go to the bathroom because they had not given me my medication for my antidiuretic hormone. I finally told them just to leave the bedpan under me because it was getting ridiculous. Things calmed down when they finally gave me my medication. Unfortunately, I spent the entire time in the hospital and next week with a debilitating headache. Nothing would touch it. I thought my spinal headache was the worst headache but at least I got some sort of relief when I would lay down flat. I could get no relief with this one.
My cortisol was low after the surgery so I had to be put on hydrocortisone. My sodium levels were also a little wacky which is why I ended up spending all four days in the ICU. I also noticed my vision is different which still has not resolved. I plan on getting it checked after the holidays if it doesn't improve. I was so thrilled when they told me I could finally go home on December 13th. The ICU is not quiet and there are people coming in every hour, nurses, doctors, lab personal, housekeeping (and why is housekeeping coming in at 3 AM?!). Even if my headache wasn't already keeping me awake, there is no possible way a person could get any sleep in there.
I had lots of visitors who kept things on the up and up since I couldn't watch movies or do anything that required me to focus on something because of my headache and vision. My mom stayed with me the whole time, even sleeping on the extremely uncomfortable fold-out couch bed. I also had visits from Carrie, Emily R., Nat (who gave me a blessing), Camie, Emily N., Christy, Bonnie, LaNae and Kaye. Not to mention all those that were taking care of my family at home. I also appreciated all the numerous texts I got before and after the surgery with prayers, well wishes and just checking in on me.
Now for the exciting news. I finally have a diagnosis!! I have lymphocytic hypophysitis. You may recognize that term from reading my blog before. It was always on the table as a possibility but they could never determine for sure if that's what it was especially when it did not respond to the trial round of steroids. In fact, they started leaning against it. Lymphocytic hypophysitis is defined as a neuroendocrine disorder characterized by autoimmune inflammation of the pituitary gland (thanks google). My neurosurgeon is going to set me up with a rheumatologist now to get me on a treatment and management plan. He is hopeful that because they were able to preserve the stalk I may even get some of my hormones back! I recently joined a facebook group of others with LH and it sounds like I still may have a long road ahead of me but it feels so good to know exactly what we are dealing with now and there are not questions. Merry Christmas to me!
Thanks for all the love, prayers, fasting, meals, rides to school, gifts, hugs, texts, calls, etc...etc...etc. I have the best dang army out there! God is good. Sometimes His road is not our road but just keeping trusting in Him. I still don't know THE reason I am going through all this. I don't know that there is ONE reason. I can already see I am not the same person I am today than I was even 6 months ago. Just keep trying to keep my focus on Him. Merry Christmas everyone!
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