Hello @Cs5rd1e0 -
I am so happy that you reached out to all of us. Admittedly I am of a different age, as well as a different experience (more on that shortly!), but I can empathize with some of your feelings in terms of not being prepared for life to change, as well as relating with family members!! Hence why this little corner of the Internet is just so darn important, and I am so happy that you found us - of course, NOT happy about your experience.
So a tiny bit about me for some context. I did not know that I had an aneurysm so it ruptured, and then I had some related conditions, namely hydrocephalus and meningitis. To treat my aneurysms, my doctors did endovascular surgery (i.e., used my blood vessels) instead of a clipping. However, in order to treat my hydrocephalus (basically the fluid that circulates between your spine and your brain to keep your brain hydrated got plugged up because of the aneurysm rupture), I had to have a shunt put in to recirculate the fluid which required a more traditional brain surgery (shaved head, staples, etc.). I then ended up with meningitis, so out went the first shunt and in with a second shunt, so tack on a couple of other brain surgeries (removal, treat the infection, install a second one).
Like you, my experience with hospitals was pretty limited prior to then - I never even had a broken bone - so it was a shock to the system to be in the middle of all of this!
So, the first thing that I learned from this experience is that YOU are far stronger and more resilient than you realize! Yes, YOU! Yes, this is a scary scenario that was quickly thrust upon you, but we are so darn blessed to live in an age where a) medical technology figured this out before you ruptured; and b) we live at a time where they are learning how to fix aneurysms through clipping and stents, etc. E.g., one of our colleagues posted about his own family history with an AVM (not the same as an aneurysm, but a very similar condition)
Now, although I had a different experience, I at least wanted to try and address some of your questions, albeit I had a different type of brain surgery.
At least here in the US - and I can’t imagine that the UK would be all that much different - is that your medical team will anticipate what pain you might be in, and they will have medication to help with that, and will send you home with heavy pain relievers. As an aside, a way long time ago, I worked at a place that was a research center for healthcare issues. One take-away that I learned from that is to NOT let pain get out of control, as it is much harder to manage it the more intense it gets. Admittedly it is a balance to strike for sure (!!), but if you need painkillers just don’t be averse to taking them.
One of the things I would revise about our medical system should I have that magic wand would to be get your discharge instructions BEFORE a procedure so I know how to better prepare! I found one for you from Oxford University Hospitals if it helps to give you an idea as to what expect. It does discuss a pain to some extent that you may find helpful. I especially like “Linda’s Helpful Tips” at the bottom, admittedly you may want to tweak them to better suit a 20 year old (thinking of those under “Memory Aids”)
The timing is - admittedly - hard to estimate. Of course, age is on your side, so that is a HUGE advantage - I mean, just HUGE!! Everyone seems to respond differently to similar situations, so no one will be able to say - yes - definitely - you will be scrambling on Skye Ridge in 3 weeks. In the above guide I linked to, you will be happy to see one thing I bet (!) is how important exercise is! However, of course, exercise is going to look a little bit differently at first, and you are going to need to scale things back a little bit to rebuild your strength. Rest is going to be a huge priority for you, and you are going to need to switch gears for a little bit. Throughout my journey, I learned that things we think are restful are NOT. So when I would rest initially, I would use anything with a screen or read a book to relax. Those are NOT relaxing to the brain!!! This will be a time to think about other types of activities such as yoga, art, meditation/mindfulness. There is an organization in the UK (Headway) that has a great resource on Managing Fatigue after Brain Injury:
I link to the pdf as it also talks about triggers and how to manage, but you may also want to watch some of their videos:
Admittedly, my journey is very different from yours, but I have pretty much returned to everything I used to do before - the difference is that I have to manage my energy levels to get it accomplished. I.e., before I used to burn the candles at both ends, but I have learned to slow down, prioritize what matters most to me, and have learned to live my best life.
Alright, great question about the hair/scar! I ended up having ~22 staples in my head in 2 different places for my shunt - one on the top of my head (~18) and the other ~5 are behind my ear, so admittedly those were more hidden. There was no hiding the 18 that ran from the top of my head almost to the back though! In both cases, since I did not know I was going to have brain surgery, there was nothing I could do about it ahead of time. I will be honest, I adore my neurosurgeon and team - they are absolutely brilliant at what they do and saved my life repeatedly! However, the one thing I learned that they are NOT good at are being hairdressers. I mean, they were saving my life (AGAIN!) and so the aesthetics of how my hair was were far from important! I did end up with this kind of weird cut, as there was one long piece left in front of my face that eventually got cut by a hairdresser to try and straighten it out. My hairdresser told me that if I know in advance, of course, they can always cut it prior to a surgery so it is not so all out-of-sorts growing out. Just something to consider.
Since I didn’t have that option, I leaned into scarves/bandanas after the staples were removed and the wound was healed when I was out in public. Some of my family also suggested getting a wig, but that isn’t my personal style but I would totally understand if someone else wanted to do that! One nice thing about brain surgery is that - well - hair does cover up the scars! People who meet me these days have no idea what I have been through - and that includes an emergency room doctor (I was there for a family member not for me!)!
Throughout this journey, one thing I was highly encouraged to do was to start a meditation/mindfulness practice. My wearables suggest it really does help me to calm down, and it definitely helps with my anxiety and sleep! My personal favorite is an award-winning app that is free, Healthy Minds.
Besides learning about mindfulness, it also intertwines lessons about how our brains work - which are just absolutely fascinating!! One thing that makes me so grateful for having ruptured, is I am so appreciative of all the things that our brain does for us that you just don’t think about pre-rupture. It truly is a fascinating, and it brings up lots of things to think about!!
Speaking of rambling, well, I have gone on for far too long myself!! Just know that we are here for you!! Please continue to reach out, vent, ask questions, etc. You are not alone any longer - you are part of us!!!
Fin Whale Fan ![]()
P.S. I was just responding to another post, and then I saw something that made me think of you! I subscribe to a resource called Brain.fm that helps me to manage my energy levels throughout the day (similar to binaural beats, but as they say:
In a way, you could think of Brain.fm as binaural beats 2.0. We took the concept behind binaural beats and applied an updated understanding of neuroscience and auditory processing to create a more effective and powerful solution.
They have also have some free videos on YouTube if you want to test out the waters, which includes some to help sleep! It might be worth giving it a try to see if it helps get you some rest.