I waited until after 9am and up I got to go to my personal bathroom! It was a wet room so I knew it would be manageable. I managed to go to the toilet ok and brush my teeth without the new sharp, pulling pain rearing its head. So, I sideled over to the shower area and WHAM!!! The moment I lift the shower out of the holder the pain hits me. I somehow manage through on and off severe pain, which I would say was a level 9 out of 10, to wash my bottom half, dry myself and get my pjs back on. I struggle back to my bed, still with lancing pain stopping me in my tracks as I go. I stop at the end on the bed and the tears begin. It honestly hurts more than I have know before!! I can't stop it and it's so worrying. I get myself, somehow, into bed and press the call button for a nurse. By this time I am in floods of tears and can't control them. Whilst waiting for someone to come, the pain gets under control and my tears begin to stop. After 15 minutes an HCA arrived and I explain what has happened, they go off to tell the nurse.
Then, not long after this another neurosurgeon, the F2 I saw on the IR ward and a registrar came in to see me. It took me a while to explain it, and I said it was a pulling, sharp pain, but I now realise that before they hadn't realised that this was not my usual ON pain, as they asked about me trying my stim and when it was switched on etc. Then the neuro registrar stated to the others that they needed to ensure it was made clear that this was a NEW pain! He asked me specifically where the pain was, so I said it is right on the top of my head and that my usual pain was lower, at the back, or stabbing on the right side, temple area. He asked where it travelled to, and although I said I wasn't sure I did say it was all right sided.
He agreed with his team that he wanted pain management to come and see me today and that he would contact Mr Patel, my consultant, to get advise from him.
I felt that I had finally managed to explain the pain in the best way I could and tat eventually they realised what I was saying.
By now, the incision pains were not too bad. I could turn in bed and lie on both sides for a period of time. I was beginning to get up easier than before.
However, the team were concerned that I wasn't getting up enough, risking blood clots etc. They also suggested that they would have to inject me with anti coagulant, if i didn't get up enough. I asked how often they want me to get up and they said every 3 hours...and not just to the bathroom but walking around the ward! So I agreed I would do that! They also made me put the TED stockings back on, to ensure there was less risk.
At about 11.30am, I decided to go for a little walk. I made it to the wall opposite my room and there I had to rest. I decided to come back to my room before it got too much.
Not long later, my nurse came in to give me pain relief. As the IV paracetamol hadn't really made much difference, we decided to go back to oral paracetamol with ibuprofen, and an anti sickness just to keep me covered. I still felt strange and not quite right, almost like being really full, although I haven't eaten much.
She also discussed me moving about and I told her how far I had managed. She said to set myself a goal, so we made a date for later on for her to help me get further down the corridor to the end window.
At 1.30pm I decided to go for it myself. Today I was determined to prove I could manage so I could get home. I made it to the window!! Relief!! But I had to wait there for a while before returning. It was a real effort and my pain kept threatening to come on but if I kept my head straight, it didn't seem to be too bad. More like tingling and a slight pull.
My friend came to visit after the protected lunch time had ended, so I when the nurse came in to go for a walk, I did tell her that I had already been.
At about 3pm, the Physio finally arrived. She discussed my home needs, such as stairs and where my toilet is and asked about my job.
We decided to go to the main staircase for me to practise, so it was a more realistic flight, rather than the steeper stairs in the gym, as I would have to keep turning round.
They took me out of the ward, to the stairs, in a wheelchair. Going up the stairs was ok. Once I got going, it was easy enough. It was the coming back down that was difficult. By now, I knew that looking down could make my head pain worse. They suggested looking forwards and feeling the edge with my feet. When I reminded them how slim the treads are on my home stairs, they asked me to turn my feet and go down putting both feet on each stair, ensuring my heels touched the back. It was slow and an effort but I did it.
They were happy that I could manage this at home and I felt confident enough. I had proved even more that I could possible get home today!!
The Physio still wanted me to see pain management before going home.
So, in my eyes I had now moved around safely and manage stairs. I was going to the toilet and not feeling too sick and eating at meals. I thought this would be it. I hoped I was not going home to get on with recovering.
The nurse came in to discuss meds. We came up with a plan to take home some codeine and just to take half alongside the anti sickness. She thought this was the least vicious of the pain relief and although I had taken it and been sick before, half would be such a low dose, I might cope with it. I was going to have a think and call her back before going off shift.
BUT...at about 7pm, Hazel the neuro F2 who had seen me a few times came back in to see me. I didn't expect this so late, I didn't know they would still be here!
She came in and closed the door. Although they always do this for privacy, this time felt different.
She basically explained that they hadn't been able to get hold of Mr Patel all day but despite that, the neuro registrar who saw me this morning believes the pain I am experiencing is more nerve pain, that has happened since the surgery. They do not know if this is temporary or not and may not be able to know. She reminded me that nerve pain would not be relieved by pain killers, so therefore anything I have taken hasn't worked for that reason. Even though pain management hadn't managed to get to me, they would undoubtably suggest something like gabapentin, which can take weeks to begin to work, so there isn't much that can be done for now!
They hope that the stimulator could reach to the point of the pain to also help it, but obviously they don't know.
We discussed what to do about staying in hospital. She said they would want to keep me in until at least Monday, so that I could see my consultant and the pain management team. However, if I thought I could manage at home, she would be ok with me going but they can't hold my bed open so if I couldn't cope I would have to return via A&E. She was adamant that one of the neuro team, maybe Mr Patel, would phone me on Monday to discuss all this and decide how to move forward. She gave me the ward number to bother them, if I hadn't been contacted in Monday. She was very definite that I needed to speak to them if I was to go home.
I explained that going home at the weekend meant someone was at home with me, whereas in the week I would be on my own. She agreed she was happy for me to go home but reiterated the plan if I couldn't manage.
I apologised for being an annoying patient and she said that if I didn't say, they would never know. And although there is lots of success with these operations the minority of patients with some form of complication, isn't as much of a minority as you would think. They learn from knowing about these issues, so are glad they are aware. This made me feel better, in that I wasn't just hogging a bed, or being a wimp, or making a fuss.
Once she left, I don't know how I felt. I'm not sure it sank in. It was just facts to me for a while.
I phoned my fiancé, as he had been there before Hazel arrived, but got called in to work. I shared this with him, and I remember using the words 'gone wrong' and he immediately replied that it might not be true! I reworded it to something less permanent, but I can't remember what it was.
It began to sink in that I could be worse from now on. I could have more pain to deal with and this surgery might not manage that. I'm still in a bit of denial. That can't be true, surely! That just can't happen.
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