3 weeks to craniotomy. Reassurance required!

General
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Hi.
I’m not a regular poster - but do come here regularly to read your stories.
I have a craniotomy scheduled for one of my two aneurysms in three weeks time and am starting to panic. So am hoping for some reassurance!
I have a 6 month old baby and a 2 year old toddler. My parents are moving in for a couple of weeks after surgery so hoping I can get rest when I need it.
My main worry is the waking up from surgery process - can anyone shed any light on this? I’ve woken up from generals before. But never after brain surgery…
Do you know what’s happened when you wake up? I keep imagining feeling very drunk / disoriented / slurry. But is this the case or assuming all has gone to plan do you just wake up?!
My Annie hasn’t ruptured - so is just being clipped. Not sure whether to prepare to be really scared when I wake up or whether I’ll know of everything was ok (assuming nothing has gone wrong).

P.s. I’m already terrified - so please don’t post anything too scary - my mind will have gone there already and I don’t want my terror re-affirming! :grimacing:

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Hey Sarah,
My name is Merl from the Modsupport Team.
I won’t lie, the wake up post craniotomy is not nice and ‘rest’ will be your friend. Some people can bounce back really well post surgery, for some there can be lingering issues. For me personally, the waking up was not good. I had people around me, but in all honesty, I just wanted them all to leave. The less stimulation, the better for me. It seemed all of my senses went into overdrive, my sight (I was photophobic-Couldn’t handle bright light). My hearing (I heard everything at max volume all of the time- Seperating conversations from background noise was difficult). My touch (if someone touched me and I was unaware, it was like a high voltage electrical current passed through me and I recoiled from it).
And then there was the headache, OMG!!! Just WOW, intense.

My advice: Take the rest when you need it. DO NOT be pushing your limits.
I say this because I didn’t. I wanted to get back to work. I had people who relied on me and I convinced myself that I was building stamina by pushing myself to recover, but the more I pushed, the more my body pushed back. I took the attitude ‘This thing ain’t going to beat me…’ and pushed harder. Something went POP and I ended up back on the operating table having further neurosurgery. Ahhh, don’t do that. This is a time to be kind to yourself. I completely understand that as a parent you have responsibilities BUT, if you do not listen to your own body you can fry yourself in a major way.

Brain surgery is not just an assault on the brain. It’s an assault on the whole person and normal simple tasks became a marathon. It’s excellent that your support is already setup. I thought 'I can do this all by myself", that was another of my bad ideas. I didn’t need assistance with everything and nor did I need it all of the time, but there were times that little bit of help was a godsend. I found if I got my head lower than my heart OMG, my head POUNDED, my eyeballs were ready to explode from my skull, I saw stars and the dizzy nausea, just yuck. NASTY. I learnt I had to adjust the way I do things to accommodate this ‘New Me’. Simple tasks like tying my shoe laces. It used to be I bent at the waist and tied my laces. Now, I have to sit and bring my foot up, not bend down. It’s an example of a small adjustment I needed to make. There were many ‘adjustments’ needed.

I am NOT trying to be scary. I know, the whole surgery process can be scary enough on it’s own, but I’ve required a few neurosurgeries and although none of them have been exactly the same neither in procedure nor recovery, we learn to adapt. The recovery takes time and nobody can say exactly how long. My best advice is SLOWLY, the slower you can take your recovery, the better the longer term.

Remember we are here if you need to chat.

Merl from the Modsupport Team

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It’s really nice that you take the time with two little ones to read our stories. Merl’s story he shared is his, take his advice and do things slowly. I was surprised he didn’t put “everyone is different” as he usually does. You don’t have to be SuperMom after your surgery. It’s wonderful your parents are coming, they get to help with the young’ uns and you!

Whilst I have never had a craniotomy, I’ve been under numerous times over the course of my life, so I can help with anesthesia recovery. There’s been a few times that sterile instruments went flying when I started talking to the surgeon who thought I was out.

What I have very recently learned is that the anesthesiologist does want you to wake up as soon as possible. I also know that some people take a lot longer than others, it depends on our bodies and how we react to medicine. My Mom had several heart procedures and took what felt like forever for her to wake up and be cognizant of her surroundings, hours in fact. But she was the type of person who could take an aspirin and be knocked out for several hours. I’m exactly opposite, my body decides to get into a knock down, drag out fight with anesthesia and I’ve been told numerous times that they gave me enough to knock out a horse and I reply try an elephant. LOL.

Because of the anesthesia and the medications used, our brains take a bit of time to catch up, sort of like waking up with not enough sleep and your brain is foggy. Of course everyone is different and every RNA has a different cocktail depending on the procedure. When I had my stent installed, John was my RNA and he told me he was sending me to my happy place. He didn’t fib on that and I woke up feeling very rested and very alert.

Remember to breathe deep, slow breaths and please do yourself and all the medical team a favor - make sure you’re hydrated before you go in for your procedure. Don’t wait until the day of it, but be conscious a few days prior. It really helps when they start sticking you for the IV and everything else as it gets our arteries and veins plump and easy to find. When they do stick you, breathe out, don’t hold your breath. A good RN will watch your breathing and stick you when you breathe out, but sometimes when they say “a small stick” we tend to hold our breath waiting for it and that makes our muscles tighten which in turn makes it hurt a bit more. I’ve been known to ask them to let me take a deep breath first and I exhale when they stick me, makes it much easier for me and the one with the needle.

Please keep us updated, wishing you all the best!

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Hi Sarah C
It’s 3 years and two weeks since I had my craniotomy and clipping of 2 aneurysms. The larger one ruptured during the procedure and was clamped for 5 minutes (to stop blood loss) and then the clipping procedure continued. Despite this mishap, I can clearly recall waking up and being myself!
I chatted with the neurosurgeon and then decided to call my old boss on FaceTime. In hindsight, I think the anaesthetic affected my judgement because who really wants to receive a FaceTime call from an old co-worker who is in ICU? We talked about skincare. However, this affected judgement after anaesthesia is my “normal”. I also called her after I had an emergency C-section. She’s a really important person to me. So other than a bit of “drunk dialling” I think I was fine, and by the next day my judgement had returned and I thought “What was I thinking calling Montana?!”. I have just asked my husband what he recalls and he says he saw me when I was still asleep in ICU and then the next day when he visited, I had been moved back to the regular ward and was chatting like normal. (It was 2020 and we had Covid restrictions on visiting hours).
So from my experience, rest easy, you will be yourself!
Nat

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I needed this more than you know. Thank you!

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I had a craniotomy to fix an unruptured right middle cerebral aneurysm in 2014 at the age of 60. I felt like myself when I woke but it was just a very, very bad headache for about a week and then the headache began to subside with time. Any big surgery tires you out for a stretch afterwards. My sense is some activity is good but I definitely felt like I needed rest in the couple of weeks afterwards. I noticed I was a little bit spacey for a short time after the surgery but that subsided completely, relatively quickly and I feel I have no mental limitations from the procedure. I have no greater risk of an aneurysm now than the general population. I was glad I chose to have the unruptured aneurysm fixed. Good luck.

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My previously ruptured/coiled aneurysm was clipped. My surgery was on the right temple side. Different surgery locations equal different experiences but here’s mine. My surgery was on Wed morning and I went home on Sat morning. Due to the temple location I had a lot of face bruising/black eyes/swelling. But that did not hurt and went away in a few days. I have an issue with all anesthesia that it makes me throw up for a few hours so that was normal for me. I was not disoriented and talked to my mom on the phone right after I woke up. I did have a headache but the only meds they gave me were ibuprofen and muscle relaxer and that was enough. Not 100% pain free but no worse than a bad headache. When I got home I was able to do anything, just needed a lot more rest. I was driving in 2 wks. Use baby shampoo, other types will burn the incision. Staples don’t hurt but I felt 100% better once they were removed. This was the only surgery I’ve ever had, other than the coiling, and it was not nearly as bad as I feared. Just follow the doctor’s instructions and you’ll be fine. Mine only said “don’t strain at all”. Hardest part for me was walking into the hospital to get it done. Sending you best wishes!

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Hello! You’re in my prayers and I believe you’ll be in good hands! My dear mother had a craniotomy almost 3 years ago. She was 72 years old at the time. She was not in the best of shape, had smoked cigarettes for nearly 55 years and was underweight. Due to her age and I’m certain health at the time as well as surgical complications, she has never cognitively fully recovered. I’m uncertain whether there was a moment or increased time during the clipping of her aneurysm that the blood supply was reduced/diminished to either her frontal lobe or elsewhere within the brain.

I am not sharing this to scare you as I only want to be honest and forthcoming. As with any surgery, there are always risks. The older one is and with other co-morbidities, the stronger the risks.

I know this response does not follow along with the anesthesia question and I apologize for that. I can say that my mom did not complain of headaches post-surgery or when she came home several days later.

From what I saw with my dear mother as I have provided care for her since after this surgery, REST is vital! I can’t stress this enough to you. As you have read, each person is different and one may require help for a month or longer until they feel “good.” It’s rather difficult to put a time frame on the recovery and healing aspect.

My mother requires 24-7 care now post-surgery. She has what her doctor has termed “organic dementia.” From numerous studies I have read, an older individual has increased risks with this surgery. She is experiencing dementia now post-surgery as prior to the surgery she was perfectly fine cognitively.

Her posterior communicating artery had the aneurysm. This resulted due to a birth defect of this artery, per her neurosurgeon. My sister and I both had an MRA of our brain once this incidental finding of our mothers took place. Consequently, my sister found out that she also has an aneurysm in this same artery. I do not although I wish it was me and not her as she is married and has a child.

Please stay positive! I just wanted to share part of my story with you. Please prepare……financially, legally and any other way you deem reasonable. Follow-up
appointments and all future appointments are critical. I pray you are healthy and do not smoke cigarettes. I pray for a speedy recovery for you and a successful surgery!

God bless,

Jessica

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Jessica
Thank you for sharing your mothers experience. A year and a half later my wife is still unable to care for herself after her rupture. I often wonder if we are the only ones. I read all others stories and think they seem to be doing so much better then her. I feel you.

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Thank you for your reply! I have yet to read another’s story with a family member in advanced age. This would be interesting to know on this forum/website!

My mother’s aneurysm did not rupture…it was an incidental finding due to a syncope event which resulted in a MRA of her brain and that’s when the ER doctor saw the multiple aneurysms. She has 3 more that can’t be treated due to their locations.

I pray for you and as well understand what your days consist of. It’s rather trying for me being the only child living in our town, working full time and attending nursing school. BUT, as you know, we are always stronger than we think! Resiliency!

Thank you for your response and you brightened my day!

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Thank you :pray:

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I had a clipping /craniotomy for an unruptured aneurysm 12 hours of surgery? When I woke was perfectly fine just very sleepy and was sent home in 2 days. I slept slot and 2 years out still am very exhausted always but other than this fine, rest rest rest! Best wishes and speedy recovery!

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