What the Neurosurgeon Said

Back at the University of Utah on July 4, 2017, we met with a neurosurgery resident.  He told me that I did indeed have a brain tumor, that it was likely low grade (based on what he could see from the cells), and that I needed to have it removed.  He said that if he were performing the procedure he would do an awake craniotomy so my speech could be monitored during the procedure.  That was about all we got out of him.  He did ask about my family history and whether brain issues were a problem on either side of my family.  I had been texting my mom throughout the evening, and she told me that a few people on both sides of my family had suffered from epilepsy.  When we told the resident, he said, "well, at least this isn't epilepsy--we can get rid of this."  And that was the first time someone gave us the impression that overwhelming as brain surgery may be, this was just a brain tumor and just brain surgery.  It wasn't a lifelong problem or anything like that.  (More on this later...)

With a few minutes' counsel and prescriptions for dexamethasone and Keppra (levetiracetam), my husband and I left the hospital and went to his aunt and uncle's house.  Fifteen hours after I checked into the ER in Logan.  I was told to check in with the neurosurgeons at OHSU when I got back to Oregon.  It was a long day.  The dexamethasone was a steroid to help reduce the swelling around my eye, and you are supposed to wean off of it instead of stopping cold turkey, but no one told me that.  I don't think it worked quite as well as it could have if I had been taking it properly.  The Keppra was more of a prophylactic.  It is an anti-convulsant, meant to subdue seizure activity.  I hadn't had a seizure, but I think the resident didn't want to be accused of sending me away without medication for seizures just in case.

We made it home on July 6th, and I met with a PA at my primary care physician's office on July 7th.  He didn't know much about brain tumors, dexamethasone, or Keppra either, so his office tried to start the referral process to get me into the neurosurgeon at OHSU.  The days of waiting to see a doctor at OHSU seemed so long, but when I look back at my calendar, I realize it was only one week.  I made several calls to OHSU and my PCP's office to make sure the referral was being processed, and spending all of that time on the phone was frustrating.  However, now that I understand how strict a neurosurgeon's schedule is and the fact that they only meet with patients one day a week, I realize I was very lucky to get an appointment with a doctor on July 14th.

When I went to see the doctor at OHSU, I first had to meet with another resident.  She came in and pulled up my MRI images.  She said that the tumor looked low grade and that they would probably just watch and wait with persistent MRIs.  This was frustrating because it contradicted what the resident had said in Utah, but then the doctor came in.  Without even fully entering the room, he saw my MRI on the computer screen and said, "You're too young for this; that needs to come out now."  He wanted to do surgery by the end of the month, and I asked if we had a little more time.  Fortunately he said yes, and I was able to get some of my affairs in order--finishing the class I was teaching that summer, arranging for childcare for my kids post-surgery, taking more time to process everything that was going on, etc. 

Overall, I left the appointment at OHSU feeling pretty relieved that two doctors had given me the same opinion--surgery was best, preferably sooner rather than later but a little delay wouldn't hurt.  The only frustrating thing was learning that a neurosurgeon can't do anything if you think you are reacting poorly to a drug you've been prescribed.  I would have to wait to meet with a neurologist and figure out what to do about my apparent Keppra allergy.