Hey Marsi,
I’ve got to say first, I’m yet to hear of 2 exactly the same craniotomy and recovery stories. Some can have minimal after effects, for others those effects can be overwhelming. But in saying that, here are some of my suggestions:
-Pain ointments and sprays weren’t any benefit for me. My pain was my head, behind my eyes, inside. I couldn’t get to the pain. The incision was itchy as OMG and there are some lotions/potions which can assist with this BUT you MUST speak to your Dr about such things. The very last thing you want to do is compromise the wound healing process. Some lotions promise the world, but an infection could be life changing, so ask your Dr.
-Set up your zone. Stock up on what you think you’ll need ie snacks/medications/puzzle books etc. With some people computers are OK, others can’t handle the blue light from the screen. It’s similar with smartphones and screens. But, if you do have tech, make sure you have all of the plugs and cords you may need, close by. You don’t want to be head down, bum up, in a cupboard or cardboard box hunting for a charger. (if I get my head lower than my heart ie head down, bum up WHOOOHW I’m seeing stars, dizzy, nausea and, on ocassions, found myself in a pile on the floor).
-I could pull on tops, slowly. I found more of a sideways action rather than arms up. As for shoes and socks, yes, but from a seated position, bringing my leg up rather than bending down to my feet.
-Place the things you need at your level. None of this reaching for the top shelf type stuff. Don’t be exerting yourself in ANY way. At least for the first week or so at least, then only minimally.
-For me, the OTC meds were of very little benefit at all. If you can manage on OTC meds, for your general health, that would be better. Me personally, I found I need an opiate to knock the pain.
-A dark, silent space, where you can lay down, with lots of pillows. I found my positioning was important and I needed back support (Pillows). For me post surgery, light was a BIG issue. Noise was another trigger. If you know your ‘triggers’ (what can make you symptomatic) avoid them. My wife has a friend, she’s a nice lady, but her laugh can make the walls shake. It can reverberate around me for about 1/2 an hour, any longer and I can feel the headache coming. When she visits I do the meet’n’greet, then I vanish to the other end of the house. On a good day, it’s all OK, but sometimes she triggers me badly.
I did use a wheatbag heatpack for my neck and shoulders, but for me the icepacks were too much and rather than assist, the cold exacerbated my symptoms. I found hydrotherapy very good for giving the deep whole body relaxation.
Other people/friends/family may offer to assist and give advice. As hard as it can be sometimes, Welcome it. They only want to help. I was drowned in sympathy and to be honest I wanted to tell them all to go home and leave me alone. Trying to console me with stories like "well, my friend ‘John’ had brain surgery and he’s OK…', but whilst I have a man with a sledgehammer bashing his way through my forehead, the very last person I want to hear about is your friend ‘John’. But there maybe times when you REALLY do need that assistance, so don’t push them away too far.
Finally, I want to say, you might go through all of this and find you don’t need any of it and we all hope/wish/pray that this is the case, but on the off chance that your recovery doesn’t run as you planned, taking care of it prior can save you a LOT of headaches (no pun intended). As I tell everybody, this is a time to be kind to yourself. Listen to your body and it will tell you when you need to rest.
Merl from the Modsupport Team