So as the title of this post suggests (spoiler alert!), I did not, in fact, have a pituitary tumor.
We spent the Sunday before my surgery in Raleigh with Hunter's brother, Morgan, and his wife, Meggan (plus their two kiddos). Once again, her parents were so gracious to open their home to us, so Hunter planned to stay there with Sawyer while I was in the hospital. My sister in law had offered to watch Sawyer the day of the surgery so Morgan could be with Hunter at the hospital while he waited. Again, I cannot overstate how blessed we felt during this whole process to have so many people who offered up their time to help us.
We ate a big spaghetti dinner on Sunday night and had already been eating all.the.carbs. over Thanksgiving and the days that followed. Let me give you some advice if you have an upcoming surgery planned... don't do this! I'll explain why later if you can't already guess.
I wasn't allowed to eat or drink anything after midnight, which was honestly one of the parts I was dreading the most about surgery! I went to sleep that night feeling a decent bit of anxiety. Monday morning was tough; I was so sad to say goodbye to Sawyer. I'm so happy that he was still so little when we were going through all of this... I don't know that I could have done it if he was at the age he is now where he calls my name and cries when I leave.
Because Sawyer was still so little (not even four months old), I really didn't want him to be at the hospital near all of those germs! I was told that I would probably have to stay for a couple of nights after my surgery.
The surgeon had told me previously that my recovery would be about the equivalent of having a "bad cold" Oh the lies surgeons tell 😜. Luckily, his nurse had told me to expect a pretty tough recovery period, in which I wouldn't be allowed to pick up Sawyer for a few weeks. Hunter's work schedule usually slows down in December, so we had planned for him to work from home and help with Sawyer. We expected that by the time he had to start traveling in January, I would feel mostly back to normal.
Surgery Day
We got to the hospital around 9am that Monday. Then we waited...and waited... and waited some more. Finally, around noon, I was called back to prep for surgery. Did I mention I hadn't eaten or drank anything since dinner the night before?! #hangryAs the nurses hooked me up to IVs and prepped for surgery, I had to sign some consent forms. The forms essentially listed all of the bad things that could happen, but probably wouldn't happen during my surgery. They were scary so I signed them quickly and tried not to think about them anymore. Hunter was able to come see me before they wheeled me away, and I tried to hold it together because I knew we were both terrified.
For some reason, I assumed that I would be sedated before entering the operating room. Unfortunately, this was not the case. I was wheeled in to the stark, freezing room and immediately saw MRI images of my brain plastered all over the screens. I had done a good job of holding it together up until then, but the weight of what I was about to experience finally hit me and I broke down. Luckily, the nurses were amazing (I have some serious respect for nurses after child birth and surgeries!) and by the time the room was filled with my neurosurgeon and ENT surgeon, along with many other people I didn't recognize, the anesthesia started to kick in.
As I begin to type up this next part, my stomach is in knots just thinking about it. When I awoke from surgery, I felt worse than I have ever felt in my life. My mouth was like a desert and my head was absolutely killing me. The neurosurgeon told me that it was 8:00 pm and that they had to stop during the surgery because they didn't find what they expected. He told me I was too out of it to get into details and that they would explain it more later. I expected to be loopy after surgery, but I was painfully alert. The surgery was only supposed to take a few hours, so I knew that if it took 6 (they started around 2), that something must not be right. As I was moved into a small recovery area and greeted by Hunter and Morgan, the looks on their faces confirmed my fears. As much pain as I was in, I felt so bad that Hunter had to spend so many hours not knowing what was going on or how I was doing. They had given him updates, but I know he was still so nervous.
Hunter informed me that the surgeon had to stop operating and do a biopsy for pathology. The rest of the details were still fuzzy, and it seemed like no one really knew what they had found yet. I was told it wasn't cancer, so that was a huge relief.
The pain I experienced after the surgery was indescribable. I remember telling Hunter, "I would have 100 c sections before going through that again." I kept telling the nurse how much pain I was in, and he kept calling to ask for permission to give me more pain medication (they were giving me Dilaudid, which I had never heard of but later learned was a VERY strong narcotic). Nothing was helping. I was so thirsty and begging for water, but they wouldn't let me drink anything until they were confident I wouldn't get sick. He gave a wet foam brush to put on my tongue, but even that little bit of water was making me nauseous, so he had to take it away. I knew that at least part of my pain was due to the fact I hadn't had anything to eat or drink in over 24 hours, but I wasn't sure why I was so dehydrated when they were giving me fluids in my IV. I finally figured that recovery from this surgery must really suck more than I expected (and I was expecting a decent level of suckyness!).
I sent Hunter home (well, to our home away from home in Raleigh) to spend the night with Sawyer, and hoped that I would be able to fall asleep once I got into my own room. My head felt like the worst migraine I had ever had times a thousand. I also had packing and plastic splints up both nostrils and gauze over the outside of my nose, which was as uncomfortable as you'd expect. Once of the nurses was so sweet and tried to prop pillows in front of any of the lights from the outlets and monitors in the room. My sister in law had also given me a sleep mask which really helped since the light made the headache worse. By the middle of the night/early morning, I was finally able to drink some water without becoming nauseous. I was also starving, so the nurses were able to wrangle a few cups of jello and applesauce to hold me over until they started serving breakfast. The pain was still bad, but having something to eat and drink made it a little more manageable.
I couldn't believe how thirsty I was by the morning. By the time Hunter got to my room, I had probably drank several liters of water. I was literally dreaming of water and smoothies and icees... nothing seemed to quench my thirst. The residents make their rounds early at the hospital, and when they talked to the nurses and heard how much I was drinking, and the output (TMI but I still had a catheter in at this point), they were concerned.
Remember the consent form I had to sign but didn't really read? Well, one of the risks of this surgery was developing Diabetes Insipidus (DI). Basically this meant that my body couldn't regulate how it handled fluids, and it was leading to the intense dehydration I was experiencing. I was told that it could be a temporary side affect, but it could also be permanent since the antidiuretic hormone is controlled by, you guessed it, the pituitary gland! I was monitored closely and put on medication, which quickly helped. I also had to measure my "output" in a fun hat on the toilet once I was able to ditch the catheter. Good times. Luckily, my DI went away after a few days.
Diagnosis
I stayed in the hospital until Thursday so they could monitor my DI and manage my pain levels. After seeing all 3 of my doctors and getting various answers from each of them about what I actually had, I finally got a confirmed diagnosis. I have Lymphocytic Hypophysitis. At the end of my pregnancy, my pituitary gland became infiltrated with lymphocytes, which caused it to stop functioning properly. It's a very rare (and likely underdiagnosed since it requires a biopsy to confirm) autoimmune disease. On top of being rare, mine was apparently abnormal in that it appeared exactly like a pituitary tumor on MRIs.The neurosurgeon wasn't sure how much damage was done to my pituitary gland already, so I would have to have another MRI to see if the swelling had gone down. It would also take some time to see if my hormones would go back to normal or if I would need to remain on hormone replacements for life.
We stayed in Raleigh over the weekend as I had to go back on Monday to have the packing removed from my nose. That was fun! Throughout my stay at the hospital, the doctors and residents were constantly checking to see if I had any drainage from my nose. That's because another major risk of this surgery was having a cerebral spinal fluid (CSF) leak. I had developed a leak during surgery, but they had repaired it.
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| Snuggling in Raleigh during recovery... this was me on a good day during that week. Yikes! |
Recovering at home... or so I thought
A week after my surgery, I was still feeling pretty crappy but was more than ready to go home. Hunter and I were both exhausted so we decided to head home after having the packing removed so we could sleep in our own bed.![]() |
| So exhausted |
I spent most of Tuesday on the couch. As much as I wanted to enjoy being home and back with Sawyer, I just didn't have any energy. I went to bed early on Tuesday night and told myself I would get up, shower, and get myself together on Wednesday. Life had other plans.
In the middle of the night, I woke up shivering. I made Hunter lay close to me since he is a living furnace, and that should have been his first indication that something was wrong; I usually hate being touched when I'm sleeping! Sawyer woke up early and Hunter got up with him. I wanted so badly to help but just couldn't stop shivering. I was thirsty but too tired to go downstairs, and I felt awful bugging Hunter when he was already so busy with the baby. I finally had to get out of bed to go to the bathroom.
As I was sitting on the toilet (sorry, TMI), my vision became blurred. Everything was quickly going black so I screamed for Hunter to come upstairs. I told him I couldn't see but that I wanted to go to the sink to wash my hands. That was the last thing I remember. A few minutes later, my vision started coming back and I was in Hunter's arms as he sat on the floor cradling my head in his lap, frantically talking to 911. I heard him telling them "she hit her head on the wall". I must have come back to my senses pretty quickly and realized that an ambulance was likely on the way, so I told Hunter, "I'm so gross, I haven't showered! I need to shower before they get here!" Yeah...that didn't happen. Then I went into planning mode. There was no way I was going to let Sawyer go into a nasty emergency room. We racked our brains to think of who would be home on a weekday morning. Luckily, our neighbor down the road was working from home and was so kind to watch Sawyer while we went to the ER. (He also took care of Colt for us a lot of the time that we were gone which was so sweet).
Two paramedics loaded me onto a stretcher and down the stairs, into the ambulance outside our house. I was trying to explain my now extensive medical history to them, but I could tell they weren't quite understanding how serious this could be. I told them that I would need steroids immediately since I had adrenal deficiency. This was one of those situations where, in a healthy person, the adrenal glands would be kicking into overdrive to handle the stress. When they put me into a room they explained to the doctor that I was there for complaints of a headache.... yeah not quite. 😒
I spent all day Wednesday in the ER as the doctor communicated back and forth between me and the doctors at Duke. I began noticing some leaking out of my nose and was really trying hard to convince myself it was just a runny nose from the surgery. The doctor in the ER wanted to do a spinal tap to check for a CSF leak, but there was no way I was going to have anything done anywhere other than Duke, where they were familiar with my history. My ENT surgeon agreed to Facetime with us so that he could see the dripping for himself. That was when they told us we would need to come back to Duke immediately.
I couldn't believe what was happening. After everything we had already gone through, we were headed back to Duke. We had already received help from so many people. Family and friends had taken off of work, and now we were going to have to inconvenience everyone again and, worst of all, leave Sawyer again. I was absolutely heartbroken.
Going back to Duke
Hunter quickly went home to throw together some bags for us and the baby, pick up Sawyer, and head back to the hospital to take me to Duke. By the time we got there it was late, but his brother saved our butts again and met us in the parking lot to trade cars and take Sawyer back to the house in Raleigh with him. We had to go to the ER, but they had already received my information and we were able to get in immediately. The room was small and loud and just awful in every way. Hunter didn't even have anywhere to sit for a few hours. After midnight, some of the residents that I had been working with came to our "room", if you could even call it that. Side note... why did they all have to be super attractive people that were always seeing me looking like 2007 Britney Spears?!They asked me to hold a cup under my nose to watch the leak. Within a minute, the cup was quickly filling up, and my hope was fading just as fast. They then gave me the news that I had been praying I wouldn't hear... I would have to have another surgery to repair the leak. I immediately broke down into tears, and I don't think I stopped crying until they got us into a real room Thursday morning.
The CSF leak explained the terrible pain I was in after the first surgery. In speaking with the doctors, we assumed the leak had probably started before I ever noticed it, and intensified after hitting my head on the bathroom wall.
Once we got to the room, I took a shower before they could tell me I wasn't allowed to, as I knew it took a few days the last time to have enough energy to be up and about. I also drank some water out of the tap as I brushed my teeth since I had once again been told not to eat or drink anything.
Thank God the second surgery was not nearly as bad as the first, and I woke up feeling pretty decent compared to how I had felt the last week and a half. I did develop DI again, but it went away before I was released. I missed Sawyer too much the second time around, so I had Hunter bring him to the hospital so I could get a few snuggles in with my favorite little guy. If there was ever motivation to recover quickly, it was him. I stayed in the hospital until Sunday, and we stayed in Raleigh with Meggan's amazing parents once again. On the 21st of December, I had some super tampons pulled out of my nose once again, and we decided to play it safe and stay another day to make sure there was no more leakage. We headed home just in time to spend the holidays at home, and even made it to church on Christmas Eve. For Christmas dinner, we ate frozen pizza and counted our blessings. It was the best/worst Christmas ever.
Recovering... for real this time
Over the next month, Hunter's parents, my parents, and two of my best friends took turns staying with us to help with Sawyer (and bring me bananas and Gatorade in the bathroom when I was too exhausted from showering to make it downstairs...true story). Hunter was able to get out of one of his travel commitments for work, but had to head out on a couple of trips in the latter part of January. I wasn't allowed to pick up Sawyer for fear of developing another CSF leak, so we were so thankful for the help. As someone whoRecovery was slower than I had hoped... I really thought I would have way more energy and was frustrated when simple tasks would wear me out for the day. My endocrinologist put me on a high dose taper of Prednisone which certainly didn't help me feel any better. It did, however, take care of the inflammation that remained from my LH. Once I finished the Prednisone and resumed my normal dose of hydrocortisone, I finally began feeling like myself again and was able to care for Sawyer on my own during the day while Hunter worked. While we were so blessed to have such amazing help, it sure felt good getting to have that sweet boy to myself again!


















