New to Community… and Grateful!

Hello Everyone! My name is Sara Jane and I just joined this fabulous community. I had a craniotomy on September 15, 2025 to clip a left bifurcated unruptured aneurysm. What I’ve been struggling with is my expectations of “returning to normal”. I ended up having to stay home from work today due to a ramped up headache (they are persistent everyday but vary in intensity), vision issues, and overwhelming fatigue. I know it’s only been just over four months, and everyone keeps telling me to take it easy - but it’s not easy. My boyfriend/caretaker found you for me and after perusing questions and answers was simply amazed. I am not alone when it comes to symptoms and thoughts… the honesty and caring I’ve seen makes me realize I’ve found a hidden gem of support! Thank you all for all you do… :smiling_face_with_three_hearts:

7 Likes

Hello and welcome, @SaraJane - I hope your headache feels better soon. cheers, @Shinykai

1 Like

Welcome @SaraJane! Happy to hear that your boyfriend/caretaker found us and shared with you. Yes, it has personally been a tremendous source of support and like-minded (unprofessional) :sweat_smile: therapy. Four months after a craniotomy is still in the thick of recovery IMO…give yourself time to rest and heal.

Best,

Karla

4 Likes

Thank you @Shinykai! In a way it makes me feel a little better knowing that I’m not alone… I hope you are doing well!

1 Like

Thank you so much @Karla! As I’ve read in other posts it is so hard explaining to people who don’t really know that you’re still healing… here that is implicitly understood no matter how long it’s been… and your welcome and kind words warm my heart :purple_heart:

3 Likes

Welcome @SaraJane!

Like my friends, although I am so sorry, you have had to have a crainotomy, on the other hand a) what a gift that the procedure exists; and b) what a gift that you are now part of our little “family” We are so happy to count you among us!!

One of my personal favorite resources is published bya group in the UK, Headway. Fatigue after brain injuries is not uncommon, and they have a great resorce about it.

Why I really like it is that they discuss not only things that can trigger fatigue, but suggestions on what you can do about it. For example, early on in my recovery, when I was told to rest, I would read a book or watch tv. Wrong! Those all do NOT help the brain to relax and can help add to fatigue.

The Brain Injury Association of America also has a nice resource with some helpful images.

FWIW, I completely agree with @Karla. Around here (as patients) we speak of healing in months and years, not days and weeks. Take it easy on yourself. You have been though A LOT, so please be gentle with yourself!!

Fin Whale Fan :whale:

3 Likes

What a wonderful way to introduce yourself! Give your boyfriend a big hug! Hugs increase endorphins which make us feel good! This group is a great group, I’m happy we are here and get to add you to the family!

If you’ve been reading around the site, you perhaps already know the importance of proper hydration, protein and rest mantra. If not, I don’t mind repeating myself it comes from my Neurosurgeon for headaches, fatigue, etc. Hydrate, eat some protein, hydrate some more, rest and repeat. Often times headaches aren’t caused directly from our repairs but oh my I think they can be an indirect cause. Our neurotransmitters get rerouted, the brain is our hog when it comes to protein and hydration so try to keep your brain happy. It also likes physical exercise as in walking. Try to do a walk about whenever possible. You may need to add electrolytes but as always speak to your surgical team first.

Please thank your boyfriend for finding us and thank you for joining. Your boyfriend is also welcome to join us. Caregivers have a special place in my heart. I couldn’t and often times am not allowed to do things like cook unsupervised so I’m enormously grateful to and for BH!

3 Likes

Hi SaraJane,

Welcome to our community, I have been so lucky to have a wife/caregiver who has helped me through the past nine and a half years since my rupture. I have leaned (through trial and error) to give myself a break, this recovery gig is not a sprint but a marathon. I am able to workout and exersize again (someting I took for granted ten years ago) and it helps a lot. Hang in there and follow doctors orders, but be sure to give your boyfriend a hug

2 Likes

Everyone here is making me feel so welcome! Thank you for the new mantra @Moltroub! All three things I personally struggle with a bit, but by sharing the info with my boyfriend (J), my father and work colleagues, I’m constantly reminded of what I need to do… and I more than appreciate it! It particularly helped over the weekend when we figured out I may be suffering somewhat with medication overuse and experiencing “rebound headaches”… Tylenol (which was working then suddenly stopped) being taken multiple times a day, every day for four months will do that apparently! I have a message in to my Surgical Team and am awaiting a reply… ugh… but your advice sincerely helped! So, you are one thing I’m extremely grateful for :smiling_face_with_three_hearts:

1 Like

Thank you @Ulsterscot for the words of encouragement! I’m beginning to realize 4 months is essentially being just out of the starter gate - something that is a bit of a difficult concept to grasp, but reality and what I experience is quickly making me come to grips with… and yes, I hug my boyfriend (J) a lot every time I see him - he’s a very good hugger! I’m glad you’re making progress and are able to get back to things you enjoy doing… I’m grateful for that on your behalf - give your wife a big hug from me!

Oh my gosh! Thank you for the article links @FinWhaleFan! One of my favorite things to do is learn - especially when I don’t have to muddle through all the “bogus” info that’s out there these days! I am grateful for the digital age so I don’t have to go to the library to try to find info on a topic like in the “olden days” (although I do still do that :blush:)! The articles you sent were a gift of knowledge and helped my understanding of what I’m experiencing… even tho I may not feel like it - it is actually normal! Thank you too for the reminder to give myself grace :black_heart:

1 Like

Ha! Yes, @SaraJane, access to online information was transformative to our lives! [Apologies for the delay but speaking to a fellow cat person, HRH needed to be held to look out at the birds for a few moments so it is hard to type when your arms are full of fur!]

I wholeheartedly concur - continuously learning is the best! Even my neurologist tells me that one of the best things you can do for your rain is to be a lifelong learner. After my experience, I have become a very amateur neuro nerd as I have added to the list fascination about our brains! E.g., just yesterday I learned that every minute, 750 to 1,000 milliliters of blood flows through our brain which “is enough to fill a wine bottle and them some!” [ Gupta, S. (2021). Keep sharp: Build a better brain at any age. Simon & Schuster.] That is amazing to me!! I have definitely learned to be in awe of what our bodies and minds do - so much of it I took for granted pre-rupture!

From what you say, all your experiences seem to be quite normal. The situation is that society doesn’t consider brain injuries (it has been called the “invisible injury”) which is what makes this platform and everyone here so vital. Thank you again, BAF, for making this available to all of us!

Keep looking after yourself, and vent/let us know what questions you have. You have found at least one person who loves to research it :grin:, but I know there are others around here too!

Thanks for the kind words. We do have an awesome group, I’m especially proud of our members. And look at you jumping right in helping others!

Yep, rebound headaches are a thing. My neurologist put me on strict adherence to no more than three times a week, once a day of NSAIDs, I’m just as careful with acetaminophen due to a liver issue it caused me in my early 20’s. They didn’t know it could affect the liver back then, it was a part of the pain meds I had been given. Bless my doctor’s heart, he suggested I have a drink in the evening to help control the pain. Knowledge grows and we need to make sure we’re up to date on stuff we take. You might want to ask your surgeon’s team on what and how much if you haven’t a neurologist yet. Portals are the fastest way for me to get replies back. Even if a send the message to the doc, I expect someone on the team to contact me within 48-72 hours. I’m not their only patient, and I suspect there are more pressing matters so I’m patient.

1 Like

Again… thank you @Moltroub! I truly appreciate your sharing your experiences and knowledge! I do not have a neurologist… I will ask about that. And yes, I know how to play the Waiting Game… patience is key… I’m just glad they do answer! As to jumping in… well, dual purpose I suppose. I hope what I share might help someone else and also find it kind of therapeutic, reinforcing myself to utilize what I have learned myself :smiling_face_with_three_hearts:

1 Like

Apologies for jumping in, but just wanted to share my experience regarding neurologists.

My first neurologist retired part-way through my care, so, of course I was referred to another. Trust me, I get it, but I believe he was so overwhelmed with cases due to various reasons, I was referred back to my neurosurg/neuroradiology team. [At that point, I likely was not as dire as someone with dementia, etc.]

Don’t get me wrong, I adore my team (they saved my life multiple times so how could I not?! :smiling_face_with_three_hearts:). However, I really believed I needed a neurologist on my team. Neurosurg is GREAT at fixing my brain problems, but (in my experience) my neurologist focuses on brain HEALTH, and has a different skillset in understanding the mind/self versus the brain as a physical operation. [E.g., who will help navigating if/when/how back to work? Advice re managing fatigue, referrals to speech therapy, etc? Most importantly, watching for new memory, cognitive issues?] Besides I now have someone to ask geeky brain questions or just discuss brains generally. :joy:

I really had to learn to advocate for myself, and with some doing I finally found one on my own, outside my normal system. It may be my little corner of the world, but they are in high-demand and waiting for appointments can take a very long time. If you have a local group of neurologists they seem to have quicker availability than a solo … or perhaps virtual is an option as well? Honestly, I don’t regret my decision at all and I am grateful to have my neurologist as part of my team, as it is clear he is playing a vital role.

Wishing you a headache free day!

Fin Whale Fan :whale: