While it was a welcome thought to have in our minds that I could be truly on the road to recovery, we were definitely aware that I wasn’t out of the woods yet for complications to arise. I continued with all of the meds, except for the heavy one for pain; I was really okay getting by with regular Tylenol. I kept myself totally upright, night and day, so as to try to prevent the dreaded CSF leak. On Friday night (four days out of surgery and second night at home) I gradually started to feel a bit like my leg was falling asleep, which I initially thought was due to lying in the same position all week. but then I started feeling the same sensation in my arm too. It wasn’t painful; it was just sort of annoyingly tingly and somewhat numb. I could still control everything fine. When it wasn’t improving with position changes we started to wonder if it was a warning of a problem, so we called in to speak to the neurologist on call. We live an hour away from Stanford, and were exhausted, so we weren’t super excited to drive over to the emergency room there at 9:00 PM, but that was their recommendation. They wanted to do some more imaging to see what was going on. Fortunately, my mom was staying with us and could stay overnight with the kids; we figured we’d be back in the wee hours of the night.
Feeling exhausted and fairly demoralized having to face another ordeal, my husband and I loaded me into the car, still in my jammies, and we arrived around 10:00 PM. Upon arrival, I was given a wheelchair to hang out in until they checked me in and called me back. My symptoms remained the same, and my eye was bugging me miserably.
Once we were called back we hung out in a very quiet room, and a friendly nurse came by to load us both up with heated blankets. They took my vitals and said that they wanted to do a CAT Scan and an MRI. I got in for the CAT scan probably by 11 PM, but had to wait until about 2:30 AM for the MRI. They gave me a little sleep mask to wear since I couldn’t close my eye. I found it fitting, given how exhausted I was, that the mask said, “Let there be sleep.”
The doctor we had spoken to on the phone had ordered the imaging procedures and said that she would be in the ER all night, and she had seen me when I was in the ICU earlier in the week, so she knew my case. We thought we might see her at some point to find out what was going on, but we never did. The ER started to get busy and they needed my room, so they moved me and said the neuro team would be by soon. We waited and waited and tried to sleep, but it wasn’t too restful. They finally said they were admitting me, and moved me again to a little room in the main hospital. It wasn’t until 9 AM that we finally saw someone from the neuro team, who shared his personal opinion that I had had a small stroke. He said they were going over the images with a fine-tooth comb, and found some little white spots at the brain stem that indicated trauma, caused by the post-op swelling. He wanted to get the rest of the neuro team and the stroke team to come by to confirm it, which he said would be soon. They didn’t want me to eat anything in case they decided to run some more tests. (By the way, I was starving because of the steroids…)
My husband was a trooper, trying to locate caffeine and food for himself in the wee hours of the night. I was feeling weak and kind of worried, and my brain was too tired and overwhelmed to process what they were saying. My husband was my amazing advocate with every nurse and doctor visit.
Later in the day I got moved again to a bigger room, and was visited by a stroke specialist. She spent about 15 minutes testing different things, and concluded that I had not had a traditional stroke, since I still had decent strength and some feeling on the right side, even though it was less than the left. (I couldn’t detect temperature at all on my right side.) My neurosurgeon, who we didn’t see, but who was consulted, felt that it was just swelling at the brain stem, causing similar effects as a stroke. The reassuring news was that they expected that I would recover fully from it, though they couldn’t say how long it would take. There was really nothing they could do to treat it, such as giving me blood-thinning meds, because the surgery was too recent.
Finally, in the late afternoon I was allowed to eat. I ordered my usual pureed broccoli and carrots, as well as some chicken and a fruit gelee. An occupational therapist came by to do some more assessing, and finally, around 6:00 PM on Saturday we were allowed to go home. Thankfully, our meal train deliveries were rolling in everyday, and we were able to come home to a hearty meal, very, very ready to get a solid night’s sleep after our 21-hour adventure to the ER. I was relieved to be back home, but still had an unsettled feeling about what else I was going to have to deal with in the coming days…