Brain Surgery Recovery + Discharge

So this will just be a follow up from rene’s update a few days ago. Its going to be a very long description of this week from my point of view. I’ve now been discharged on day four post-surgery. Which I’m thankful for because hospital felt like one very long sleepless day. The only good sleep I had was during surgery. Since then getting comfortable on my ward bed has been an impossible task. Either due to head pain or hot flashes that I seemed to keep getting, felt like I was going through the menopause. Maybe it’s a reaction to the cocktail of drugs I was on. Maybe not. The ward was extremely hot anyway and no real way of cooling yourself down during a hot flash. Rene was a good carer though and seemed to enjoy pouring freezing water from damp cloths on me to shock me and cool me down.

On the Wednesday we turned up and waited in surgical admissions for a while, where I met the other tumour patient who was having surgery the following day. Nice guy, who seemed far calmer than me about the whole thing.  I was then met by my registrar anaesthetist to answer some more pre surgical questions. And to re-go over the risks of the upcoming surgery and the general time frame for the day. Which was important as I hadn’t got a clue what was going to happen until then.
I was then taken to MRI for a gadolinium scan because the September scans aren’t up to date enough to plan a surgery considering tumour growth in the past four months. I then met my really friendly radiologist to sign off on the clinical trial about intra-operative MRI. This basically meant I’d have an hour worth of extra scans in the morning. And that was the only downside to the trial that I could see, so I had no problem with it, there was a small risk of developing a red back from lying down for so long. But that’s hardly a side effect worth worrying about compared to everything else that was supposedly happening the next day. I felt like with what I was getting from that hospital. The least I could do was allow my data to be used towards their research. I then got taken up to the private ward for the night because of lack of beds available everywhere else. Very pleasant surprise because I got a room of my own with a tv, fridge and on-suite bathroom and it meant that family and friends were allowed to stay much later than they normally would. So it was ideal really. Good way for me to keep my mind off of Thursdays 7am surgery for as long as possible.

Surgery Day –

I waken by a phone call from a friend, my immediate thought was this might be my last day on earth. A nurse came in and gave me some anti-microbial shampoo and gown with surgical stockings and net pants.  It was an odd look. My stomach was crunching with anxiety. But going through the motions of getting ready was fairly easy. After my shower the radiologist picked me up to take me down for the pre-op functional MRI’s . the idea of the study is to prove that being asleep under anaesthetic has no effect on the functional MRI’s usefulness. The first 10 minute scan was a scan trying to imitate being in a non-thinking dream like state. This was a fairly difficult state of mind to achieve when you’re that nervous. I was told I still had a lot of brain activity. But they didn’t blame me or try again. But maybe that’s the idea of the scan to prove people can’t turn their brains off and then compare that to  under-anaesthetic conditions. I had than had the radiologist move my hands for a few minutes during and MRI scan to watch that area of my motor zone light up, and because that’s a repeatable test under anaesthetic. I found it interesting that our brains register in the motor zone even when we aren’t the ones moving it. Anyway the scanning went okay. And I ran to the toilet before I had to be put under. In which I released a thunderfart of nervous wind before the surgery. Was a bit embarrassing to say the least. I think the nurse was smirking when I got back.

I wasn’t too fussed, because there isn’t much dignity left in surgery anyway. I knew I was about to get stripped off and have wires inserted in my nose and penis and then trolleyed in and slid onto the bed before my head would be drilled open. I was just worried I would feel it all in my sleep. I don’t remember anything from the anaesthetic room though or the surgery.

I woke up to a nurse standing over me asking me where I was and the date. Which I repeatedly got wrong but they just kept telling me to try again. I shorlty realised I was alive and in recovery which was a nice thought. Although I was delirious. I thought my recovery nurse was a friend of mine. So I kept calling after her when I needed help. But she didn’t respond to the name I had given her. So I resorted to waving my good arm for attention. Time went by really fast in recovery because I was in and out of consciousness. It wasn’t at all comfortable, but I suppose I was on such heavy drugs it didn’t matter.  My neck was sore from having my head hang in one direction for hours in recovery. I had head pain for obvious reasons. And felt pretty dizzy. The surgeons came in to talk to me during this time and they said it had gone well, and that they finished the surgery, put me back in the scanner and saw more residual tumour left in my brain on the MRI, so they went back in to get it. So obviously this means I’ve already benefited from the iMRI.

After what I’m told was four hours (the surgery was 5 hours btw) I was taken from recovery to the ward, this journey in the bed made me feel extremely sick.  At the end of it my parents and rene were in the ward ahead of me already. I started falling in and out of sleep again, but I was burning hot. And my sleep was filled with bad anxiety and panic. But this stopped after a while. And I got some rest although not of good quality. I realised here that I had a catheter in as a nurse moved a bag to my right and my dick was tugged. Soon after I was told I had a head drain too. So the fluids could escape my head.

Aftercare -

On day 2 I had both the catheter and brain drain removed they told me the catheter wouldn’t hurt coming out. But it was awful. Most painful part of the whole week. I also had the brain drain removed which was a rod of absorbant stuff between my skull and scalp. I was told this would really hurt. But was given morphine and it wasn’t that bad compared to the catheter at all.

Since the brain drain removal my head has hurt a lot more because the fluid has nowhere to go. So on top of the pain of the healing tissues, there is also the pain of fluid trying to escape through my scalp. For some reason I’m not on steroids, which is amazing because they really messed me up last time.  Because of how I reacted to morphine (anxiety/hot flashes) they stopped giving it to me, which unfortunately meant my pain management was left up to paracetamol.  This doesn’t really cover the post-surgical pain. Most of which comes from the scalp wound, and the healing skull, also pain from the areas that vice had been tightened on to.

I also had a visit from the physios and occupational therapists to ask about my living and working situations, and to get me up and about walking again, which was easier than I thought, although my balance was poor, the weakness wasn’t too bad. So I was now able to go toilet, which was important because I no longer had the catheter. Although I wasn’t drinking much or eating much because of nausea. The hospital food was actually decent most of the time. The odd meal came that was completely tasteless and greasy.

my first poo came on day 3 after an anti-thrombosis injection that immediately made me need the toilet. Going for number twos is extremely painful. Creating more cranial pressure forces more fluids up through the scalp. This is the same with doing any strenuous activities such as physiotherapy. Or getting up and walking around. On day four I had a physio and OT session which consisted of walking two flights of stairs and making a cup of tea. After that another multi-disciplinary meeting occurred in which they decided I could be discharged because my only defect seems to be weaker left sided facial muscles so i have an awkward smirk instead of a smile. So now I’m at the apartment in London with family awaiting the histology report and staple removal on Wednesday before we come home. So got one more big day to go perhaps the most important one in terms of prognosis.
Physio staircase

I haven’t seen my consultant surgeon since the surgery itself but that’s because he’s  spread so thin doing so many surgeries. Which is how it should be because otherwise the waiting list for this particular surgeon would be so long that people wouldn’t be getting treatment soon enough. His registrar was a very nice guy. Always smiling and friendly but with a confident edge, he was quite funny too. A very likeable doctor who was easy to have faith in.

Well done if you got this far, sorry for the long winded post this week.


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