I’ve seen a few people recently in receipt of their first diagnosis, being understandably scared and particularly, asking what to expect of the surgical recovery. Writing up a few notes so I can simply share this in future, hope it helps some folks prepare for what’s ahead. It’s not easy - but it’s not rocket science, it’s brain surgery!
I was told after my craniotomy (brain surgery involving a skull flap removal) I'd be 7 days in high dependency ward recover, then another 7-14 days on regular ward, so up to 21 days total. I was on a cocktail of painkillers while in recovery, the most potent being Oramorph. Watch out for the hallucinations with that; I had everything from dancing robots (quite fun) through to some quite disturbing appearances on plates of food. I was on the Oramorph for the first few days only, that was enough.
I remember constantly putting in the effort to spend time awake and talking to visitors, and also wriggling my hands and feet constantly to rebuild the motor control. I recalled being told that would take a hit. On night 3, I apparently got out of bed and went for a little 3am dance at the nurses station, so I guess the Oramorph was still in charge then!
This did encourage the care team to do an assessment the next day, at which they judged me ready to continue recovery at home. Assessment was essentially three fold: was the pain management suitable for patient at home medication? Could I use a staircase safely and make a cup of tea at the nurses kitchen? At this point, I’d been in 3 nights, not the 14+ forecast, so a faster recovery is possible.
Where the skull flap was removed for access, it left quite the scar along the top of my skull Once it had fully healed, I started doing scar massage to reduce it's prominence. It worked well, flattened it right down. At the last review, the surgeon was astonished by how well that had worked.
Final thoughts are on the cognitive load. This is why they test the cup of tea making. One of the staff explained it to me like this: those things you do like chopping veggies for dinner? That autopilot gets wiped out. These can all be rebuilt over time, but doing so is exhausting. Chopping veggies the first few times, is now the mental equivalent of maths equations homework. I also found one to one conversations OK, but a couple more people made it much harder to follow along, and I’d get tired fast.
Again, after a few months, that improves, but allow for naps after social interactions while you reset. I’m fully recovered from both aspects now, but the fatigue was immense through the first couple of months, and to any patient going in for this operation, that aspect would be the one I’d urge you to consider most seriously. Be prepared to spend a lot of time napping, and be sure your home space is supportive of that need.