In January, I had an MRI for something completely unrelated and the doctors happened to find a brain aneurysm. It’s 11mm fusiform in right MCA. I was told that I need to have the surgical clipping, which will be in early April.
I’m 20 years old, I was meant to complete my final year of undergrad in May, I had booked to go to a music festival with my friends in June. Everything was supposed to be normal and great. There doesn’t seem to be any obvious cause for my aneurysm, my doctor seems very confused, i guess I’m just unlucky. I have had to leave uni for the time being until I am well enough to go back. I feel like my life was only just beginning and now it’s ending.
I am relieved in some ways that my doctor seems to be very experienced, and he has reassured me that the position of the aneurysm is quite superficial.
I’m just not really sure how to stay positive about all of this. I’m still kind of in shock, I’ve barely even been to the hospital and I’ve never had any surgery before let alone open brain surgery. I have a few questions/concerns If anyone would be willing to answer.
I’m anxious about the recovery, how much pain I’m likely to be in, how long it will be, just anything I need to know really. I have a rough number of 6-8weeks but I’ve read in this forum that most people had to take longer. I’m quite an athletic person, I like to hike, rock climb, go to the gym, and I want to be able to get back to doing the things I enjoy as soon as I can.
I’m also very anxious about my hair/the scar. This whole time I have been kind of trying to get on as normal and pretend like nothing is going on, but last night I looked up pictures of the post-op scars/incision and I really freaked out. I kind of just thought/have been given the impression that they will just deal with it and then I can go back to normal life. I’m anticipating feeling pretty insecure and losing my confidence which I have worked pretty hard to build. Please forgive me if I am being too pessimistic but admittedly I do care about these things a lot.
I’m not prepared for my life to change, and on top of that I’ve been told the risks of the surgery and I’m not prepared if the worst were to happen. I can’t talk about that with my family because they are trying to deal with my situation themselves and make themselves feel better about it (which makes total sense).
I’m hoping to feel a little less alone/get some reassurance I guess. I’m having pretty bad nightmares and sleeping pretty terribly and I’m also conscious of the fact that I need to have as much fun as possible before the surgery. I also want to take care of myself as best I can to prepare for recovery. It actually just feels like a lot of pressure at the moment.
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.
Hey Sadie! Welcome again! Thank you for starting a new topic! Never, ever apologize for rambling. If you do then I’ll definitely have to and I like rambling. You actually didn’t ramble. You have an amazing amount on your plate right now, we get it. We also get the apprehension and fear that comes with the not knowing.
I’ve never had a craniotomy so we’ll need to wait for someone who has had one. I’ve read their stories and they were nervous prior to their procedure and what the outcome would be. It’s the unknown isn’t it? Most had great outcomes, if they didn’t rupture before their craniotomy. Ruptures make things different. My neurosurgeon did think on my third repair attempt she may have to do a craniotomy so I cut my hair short just in case. My thinking was to balance it out a bit. Hair grows back and many members get a different style to cover the area.
Everyone is a bit different in recovery. One of the things that I think helps the most is one’s perspective, also of course learning relaxation breathing. There’s many YouTube videos on it but you have to be dedicated in practicing multiple times a day for weeks until it becomes a natural part of you. It’s like learning to walk after crawling, takes time, effort and dedication. You already have those traits being at university!
I asked my neurosurgeon early on what caused aneurysms. Back in late 2013 or early 2014 and she said no one knew what caused them. They could be familial, meaning genetic as they run in families which wasn’t my case. There also is a theory of prior head trauma which is my case, substance abuse and a few others that I forget at the moment. So I don’t think the docs are confused, they just don’t know. Some will be honest and others well not so much, I like honesty, doctors are human after all and can’t know everything.
Smart move taking a semester off and giving yourself time to heal, well done! I hope you do get to go with your friends to that music festival, something to still look forward to! I experienced what most would call a traumatic event in my last semester and took almost two decades off. I needed to change my perspective and with the help of a really good therapist a few years later I did just that. Hindsight being what it is, I should have gone to the dean and talked to him or another professor, they both had experienced a lot of trauma and would have been able to help. But I was too proud in my youth to ask for help. You are not, so I think that’s great!
There was a member years ago who I recall had ruptured and he was able to go back to running marathons the next year. I’m leaning that he had a craniotomy but don’t really remember. Everyone experiences pain differently. I have an “abnormally high pain tolerance” according to a doctor or two. Some people have a very low tolerance to pain so the pain you might have will be correlated to your tolerance.
I have a few more decades of life experience than you. I look at life as chapters of my life book. My rupture is but one chapter that includes all the procedures I have had, it doesn’t define me, it’s just one among many chapters. Maybe that can help you as well. I always see the beauty around me. I do take time to smell the roses now more than before. I would suggest looking into practicing mindfulness along with the relaxation breathing.
I would also encourage you to talk with your family. Talking will help you all alleviate stress. They may be in the same boat and don’t want to stress you out anymore. You won’t know until you talk. Be honest with them and they’ll hopefully be honest with you as well. It will also help you feel less alone in all of this. I believe that with everything I know, have taught families and have personally experienced. You aren’t alone, we are here and we are a good start. But your family will be a better gift if you will communicate with them and they’ll hopefully with you. With your family and friends, they can give hugs. Hugs increase endorphins which are our feel good hormones.
There are a lot of risks to brain procedures. My belief is if we go in with a positive attitude we experience a positive outcome. It’s helped me every time, even my last angiogram when I went into full blown anaphylactic shock and the RNA was not prepared and in my opinion pretty dang ignorant of dye allergy. But I was able to let my neurosurgeon there was a problem and she righted the RNA. I also kept doing my relaxation breathing as best I could as I knew that helps me with anaphylaxis. It was funny to hear everyone keep telling me to breathe although I couldn’t laugh because I was concentrated on breathing. I couldn’t talk but I kept giving the docs and the NP a thumbs up. The RNA finally came back with the stronger shot and then my Neurosurgeon ordered a push on the saline solution to help get the dye out faster. It was the only bad thing that happened to me since I ruptured in my opinion.
