Warning: This post contains images of a metal head frame screwed into my head. It’s not that graphic (no blood or anything) but if you’re squeamish you may want to skip this post.
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Last week I had my stereotactic radiosurgery procedure at NYU Langone Hospital here in NYC (aka: my radiation treatment for my pituitary tumor). Thankfully, everything went well and as expected, but I want to recap the day and share my thoughts. I had to arrive to the hospital by 5:30 AM to be admitted prior to the procedure. It was an early morning, but I’m thankful that Mom and Shelby were with me as moral support.
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After I got all checked in I headed up to the floor where the procedure was to take place. I was put in a room with a dedicated nurse that stayed with me all day. I got settled in, changed into my hospital gown, and my nurse (Laura) took my vitals and started an IV. I was given a sedative and some pain medicine in advance of getting the head frame secured around my head. This metal head frame was for stabilizing my head during the procedure and also served as a point of reference for focusing the beams of radiation. The head frame was secured at 4 points into my head, two in my front forehead and two points in the back of my head. The areas were numbed before the frame was inserted, but man did this hurt. It’s inserted into the skin and then screwed tight in a sort of halo around my face. It felt like my brain was going to explode out the top of my head. My doctored warned me about the feeling but assured me that it would take my head a few minutes to get used to the frame and then the pain would level out. My body reacts to pain by vomiting. After the head frame was placed I got very nauseous and felt like I was going to throw up. But I had a head frame around my face. I couldn’t throw up. I started to get very hot and dizzy and felt like I was about to pass out. Luckily my nurse was prepared and immediately pushed something for my nausea into my IV. I felt better almost instantly. But after that whole ordeal I felt like the sedative had worn off and I wasn’t very relaxed.
The next step was to get a MRI of my brain. The results of the brain scans are fed into a computerized planning system that allows the radiosurgery team to determine the appropriate areas to treat, doses of radiation and how to focus the radiation beams to treat the areas. I’ve obviously had MRIs before, but this time I had a head frame screwed into my head. If you’ve ever had an MRI then you know that the MRI machines are very loud and vibrate. My head frame was clamped to the table I was on for security, and what I didn’t anticipate was that I could feel every single vibration of the machine in my bones through the head frame. It wasn’t necessarily painful, just uncomfortable. My MRI lasted about 30 minutes. After it was done I headed back to my room while the doctors reviewed the images and planned out my radiation treatment. During this time Mom and Shelby were allowed to come into my room. We hung out for about an hour while I waited to go to the gamma knife machine for my radiation treatment.
When it was time I headed to the treatment room. The gamma knife machine looks very similar to the MRI machine, with one very noticeable difference- it’s almost silent. My doctor secured my head to the table and talked me through what was about to happen. He explained that I wasn’t going to feel anything, and to just close my eyes and relax. He said that they could play any music I wanted in the machine, but they had just started Adele’s 25 album and I said that was perfect. Inside the machine I was just laying on a table, listening to Adele. I felt and heard nothing. I could have been in my bed for all I knew. I had no idea anything was even happening. I was actually almost sad when they pulled me out of the machine because I was so relaxed and was enjoying listening to Adele, haha. I actually told my nurse as I was transferring back to my hospital bed for her to wheel me back to my room that it was enjoyable. She laughed and said no one has ever said that before. I think just after the pain from the head frame and the uncomfortableness of the MRI this part seemed like a walk in the park. Never mind that I had super strong laser beams aimed at my brain. But I truly had no indication anything was even happening. When they pushed me into the machine “Hello” was playing and when they pulled me out “Water Under the Bridge” was just ending. The duration of these 6 songs is exactly how long the procedure took- approximately 30 minutes.
Back in my room the head frame was removed and my head was bandaged up. Just like my head had to get used to the frame after it was initially placed, it then had to get used to being expanded back once the frame was removed. I had a pretty severe headache almost immediately. I was initially just given Tylenol for the pain. Then I asked for an ice pack because I thought that might help the throbbing. It did ease it a tad, but my pain was so severe I was dizzy and I knew I wouldn’t be able to get up and walk to go home. My nurse suggested I close my eyes for about 15 minutes and explained the pain was at it’s highest level right then and was only going to decrease as time passed and my head relaxed once it was free from the frame. She turned out the lights and I closed my eyes. When she came back to check on me I was still in a pretty good amount of pain so she gave me something stronger in my IV to help. I felt the pain start to ease after a few minutes and about 30 minutes after that I was walking out of the hospital.
I had a bandage wrapped around my entire head that I had to leave on for the rest of the day, but luckily I had remembered to throw a beanie in my bag that morning. I actually felt almost normal at that time, but I still obviously had pain meds and whatever was left of the sedative in my body. Mom and Shelby and I walked to a nearby coffee shop to grab coffee (I hadn’t been allowed to eat or drink anything after midnight the night before) and then walked a few blocks up from the hospital to grab Sweetgreen for lunch before taking a cab back uptown to our apartment. I was instructed to rest for the remainder of the day and ended up taking about a 2.5 hour nap in between watching Netflix. I removed the first layer of the bandage that evening and could remove the second layer of bandages the following morning. They instructed me not to shower until the next day. The next morning when all of the bandages were removed I got my first look at the insertion points from the head frame. It just left small marks almost the size of the point of a pen that will heal on their own. I didn’t get any stitches.
By the following day I was experiencing lots of tenderness around those 4 points on my head. I didn’t have a headache or anything, just tenderness. This tenderness continued for the next several days and I also had some severe fatigue on and off, which is a very normal side effect of the radiation. I was able to return to work the day following my procedure, but I work from home. If I had to go into an office I likely would have taken another day to rest. But since I was able to work from my bed that’s what I did.
It’s been over a week since my procedure and I still have scabs at the 4 pin sites that are healing. The skin around them is very tender still, just like a bruise. I also have some numbness on my scalp, at the very top of my head, which is from the radiation. It’s a normal side effect, but could last a few weeks or a few months. Overall though, I’m feeling great! I will follow up with my neurosurgeon in 6 months and we’ll do a MRI to check the progress of the shrinkage of the pituitary tumor.
I filmed a vlog of the whole stereotactic radiosurgery procedure if you want to see more. I’ll link it below. Thank you guys for all of your kind words and support. It means a lot!
-Ash