When the Dexamethasone Ran Out

For the first week or so of being home from the hospital, I was feeling pretty good.  Yes, I slept a lot and I didn't have a ton of energy, but I went grocery shopping once or twice and my mom would take me to breakfast after we got the kids where they needed to go.  I thought that for having brain surgery life was pretty good and that things would only get better.  They didn't.

After a week or so my prescription started weaning me off the dexamethasone steroid that was helping reduce the swelling in my head.  As the dose kept being reduced, my headaches kept getting worse.  When I was on the dexamethasone I wanted to take my oxycodone prescription back to the pharmacy for disposal because I didn't need it.  After the dexamethasone was done I ended up in the ER with extreme pain.  So bad that the nurses gave me oxycodone and it did nothing.  So bad that they gave me morphine and it did nothing.  And they gave me more morphine, and it still did nothing.  After 12 tortuous hours in the ER with the only result being that I was told to come to my neurosurgery follow-up the next day (so we were 15 days post-surgery here), I went home at 4 a.m. and tried to sleep.  Once everyone was gone in the morning I think I took a nap before my doctor's appointment, and eventually with the help of oxycodone and a lot more rest, I started to feel mildly horrible instead of on the brink of death.

I had been so afraid of becoming addicted to opioids that I had not wanted to take the oxycodone prescription at all.  I am not in any way giving medical advice here (or anywhere on this blog), but my personal experience taught me that I needed to stay on top of the pain, and that was going to mean taking some oxycodone.  If I didn't stay on top of the pain I was going to end up in the ER and things were going to be very uncomfortable and incredibly painful. 

I also learned that your surgeon will not give you more steroids even though they help the pain and healing significantly.  I'm not sure why this is, and I am sure there is a reason, but it was so frustrating.  The doctors kept wanting to treat pain and I felt like they should be treating symptoms.  I think (I don't know, but I think) that part of the healing process involves just letting the brain and skull do their thing, and that is going to be painful.

Lesson learned: keep your painkillers on hand for months.  You may not use them continuously, but you will probably find a time when you definitely need them.  The scary thing for me was how well the opioids worked when I didn't let myself get too far into the pain.  I could remember that horrible, scary night in the hospital and realize the difference if I took the oxycodone at the right time in the pain cycle.  There is a time and place for using the painkillers, and depending on your personality you have to find out how to best manage their use.