Today I am 5 weeks post-op from transphennoidal brain surgery to remove a pituitary tumor. After 9 years of treating my prolactinoma with medication only, my tumor decided to stop responding to meds and thus opened the surgical route.
I found my tumor in my mid 20s due to galactorrhea; This concerned me since I wasn’t pregnant or postpartum. After a trip to my OBGYN, they sent me to get and MRI and lo and behold I had a macro adenoma. My treatment options were to take Cabergoline, radiation treatments, or have brain surgery. To start, I figured medication would be the easier, less invasive option. I never considered the option of radiation since it increased the risk of cancer and my tumor was benign. Why create a new problem?
Cabergoline has some side effects but I tolerated them well for years. Unfortunately the medication was never very effective at controlling my tumor and I had to keep increasing my dosage over time. At one more I was taking 8 pills per week when most people can take 1-2. I took a two year break from my medication to have a baby and breastfeed for a year safely. Once I restarted the medication, it was clear it was no longer a viable treatment option and the high dosage came with concerns of heart damage. Thus we revisited the surgical route.
The Surgery
Brain surgery is about as serious as you can get. After learning the benefits and risks, I felt it was the right call for me. The success rate was pretty high and I saw one of the best neurosurgeons in the US. Of course there was plenty of anxiety and fear with that choice; I worried about dying, having complications and how it all would affect my young daughter and my husband. But ultimately I chose to take the surgical risk in hopes of living a long healthy life.
The type of brain surgery I got was minimally invasive. The neurosurgeon and ENT went through my nose to access my pituitary gland. No head shaving necessary! It took 8 hours to get it all but it in the end deemed a success!
During surgery they bolted my head down to the table so I woke up with some pretty sore places on my scalp. Thankfully, they put me under for the duration of surgery and was blissfully unaware of anything happening.
Recovery in the hospital
I woke up in the operating room to a barrage of questioning from the nurses. They immediately tested my cognitive function. Prior to surgery, they told me they would do that and I likely wouldn’t remember the OR. Spoiler alert, I totally remembered it. From the OR I had a nauseating bed ride to my room in the neuro ICU. I felt extremely tired post op and felt pretty weak.
That first night I was awakened every hour to repeat the cognitive test; “What’s your name? Why are you here?” Etc. Then they would ask me to hold my arms out “like I was carrying a pizza” and would instruct me to push or pull with my hands and feet. It was quite annoying and basically torture when all I wanted to do was sleep. At one point they wheeled me out again to get a CT scan. It took them a full 5 minutes to unplug all my wires to move me. I felt like I took the red pill and being unplugged from the matrix.
Pain was managed pretty well. They alternated between Tylenol and Fentanyol so my pain levels generally stayed below a 4 out of 10. Not bad after they scoop out your brains.
The day after surgery was much better. The updates weren’t as frequent and I was more coherent. The nurses allowed me to eat finally, though I had to stay reclined for a full 24 hours, unable to sit up fully. My sense of taste and smell was completely gone but eating soft warm food felt like heaven.
Night 2 was so much better. I was no longer an ICU patient and could rest more. My catheter was removed and I practiced walking around my room a little bit. It was difficult. My head felt heavy and fuzzy and overall I felt unsteady, but still miles better than the previous night.
The morning of the third and last day I got an MRI which showed I had no tumor left! They let me go home later that day. My husband had stayed with me the entire time I was in the hospital and was just as relieved as I was that I got to go home. Hospitals are great for care, but I don’t find them restful.
Week one of recovery
The first week of recovery was unsurprisingly hardest. Thankfully my husband could work from home to care for me. He brought me every meal and managed my medications. I felt unsteady walking so my husband would help me to the bathroom and stood by in case I needed help in the shower. He is one of the greatest blessings of my life. I couldn’t have done it without him.
Week two of recovery
Week two was better, but I still required help. My dad and his girlfriend alternated visiting and helped make me lunch and generally kept me company. They worried about me being alone at home if I needed help. Most of the time I slept when i wasn’t eating.
Week three and four
By this point I was feeling a lot more like myself. My energy levels varied wildly but overall I felt better. I was able to act a bit more independently but still welcomed the help. My friends and family were so kind to contribute to a meal train for four weeks while I recovered.
TO RECOVERY AND BEYOND
Full recovery won’t be until I’m 6-8 weeks post operation, but I started working half days at my desk job this week. Besides pain management, recovery has been very easy. Mainly involved paying attention to my restrictions ; No lifting 5+lbs, no bending forward, no straws and no driving.
The surgical site care was fairly easy. I used a canned saline spray daily to keep the area moist and help dissolve the packing. This week I’ve been doing full saline rinses and it is DISGUSTING but satisfying.
I’ve had several follow up appointments and will have several more. Everything is healing well and my doctors seem happy with the results. I’m happy I had the surgery and incredibly grateful for life I have and the people who rallied behind me and my family as we faced a tough time.
For anyone considering this type of surgery I would encourage you to be brave, do your research on a good neurosurgeon and remember the statistics for success are very favorable. Good luck to anyone else going through this process!