I am home and recovering, though my recovery could have gotten off to a much better start.
My op went without an issue. I was supposed to be out the same day but suddenly post op I was told I’d need to be in overnight for IV antibiotics. My afternoon was amusing for all involved, though I don’t remember many details. I was suitably numbed with fentanyl, morphine and my usual pregabalin. My theatre suite nurses were the best though. The evening and following day really ruined my experience once I was moved to a different ward. I may write further another time but I don’t have it in me now. Just to say that I was left in unnecessary pain and discomfort that I may pursue further. I did eventually get more pain medication and was eventually released yesterday evening with some morphine.
I’m obviously exhausted but I’m using the morphine very sparingly. In hospital I was on 10ml every 4 hours (once I fought my case and not including Tuesday) and since being home I’ve been on 1.25 ml every 6-8 hours – normally giving in when I move and the pain sends my body into shock with all over tremors and muscle spasms. I am allowed up to 2.5ml every 2 hours but I’d rather avoid going that high (literally).
I’m also cautiously optimistic – my device is set to stimulate for 30 seconds every 6 minutes. Currently my pain is acute at the head and chest surgery sites and where wires were tunnelled through my neck. I have head pain that I believe is because I’m stuck led on my back whereas I’ve spent the last 28 months spending 85-90% of my time led on my side (alternating). My Hemicrania pain is around 2-3/10 right now but had been 1-2/10 since post op. I know I have a lot going on and extra drugs in my system, plus the surgery pain, which could account for this – perhaps me being distracted from my HC. But I hope it is a sign of good things to come. As I say – cautiously optimistic.
In case you were wondering, while reading this, if I can feel the stimulator when it comes on the answer is yes. If you’ve ever used a tens machine on a level that you can feel but that doesn’t cause muscles twitches – that’s what I can feel in my head every 6 minutes. A strange tingle.
I’m surprised just how sore I am post op, I suppose I never considered the tunnelling of wires where there was no previously existing space for them. My head, neck and shoulders agree to be moved as one but will administer sharp, excruciating reminders if I try to move any part independently. This is worse first thing after sleeping in one position, I had to have mum help me out of bed this morning, but it’s easing a little by this evening after ensuring I move about a bit more during the day. A process that would probably be easier if I agreed to take some more morphine, having not had any since my 1.25ml at 9am, but I am terrified by personally administering opioids. Addiction is something that scares me greatly. Mum had to help me bath tonight which I was grateful for. Not something I was thrilled about needing help with, but it’s nice to wash the hospital off me. I’m not allowed to wash my hair or head for at least a week though so I’m stuck looking like the surgeons had a game of noughts and crosses.
I do know that moving forward I’m going to have to learn what I can and can’t do. Apparently on Monday evening when the surgeon visited I was told I’d have to relearn how to safely move my head. And that included no bungee jumps or skydiving. My wires are stitched in place but they won’t truly be secure until tissue heals and forms around them. Even then I have to be conscious of movements that can stretch or break them.
I’m sure I’ll update you all again soon, but I’m exhausted and this has taken me 2 days to write – though I’m glad I did as my opioid mind has not retained much from the last few days. So I’ll update you soon, when I have more energy and more to say. For now I’m alive, I’m grateful and I’m trying to let go of my anger from Tuesday. And also my hair, I’m trying to let go of my hair.
