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.
Post-Surgery |
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.
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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