Not so patiently waiting for my Craniotomy... any tips?

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Hi. I’m Steph.

Back in May, I was the passenger in a minor car accident that taught me a new phrase, “incidental finding.” The head and neck CT at the trauma center showed an unruptured, irregular 6.5 x 5.5mm MCA bifurcation aneurysm, and a 4.0mm aneurysm on the ICA on my left side. (An angiogram would later show a third, 3.5mm aneurysm on the right side, too.)

The vascular surgery team at the University of California, Irvine has been incredible, and I’m scheduled to do a craniotomy to clip the big aneurysm the first week of September. The plan is to monitor the two smaller aneurysms. For good measure, I have also submitted my records to Cedars-Sinai in Los Angeles for a second opinion while I wait.

I know I’m supposed to be thankful for the kid who caused the car accident, but I’m not. I’m mad, not at him, but at the situation. I feel like I’m signing up to be maimed. I’m only 41 years old, I have an 18-month-old, and I still have tons to do with my life, and so I’m thankful that this procedure and my doctors are able to help, but I’m still pissed.

I know being mad will pass, but I NEED TO DO something. So, while I’m working through these feelings, does anyone have any hot tips for post-craniotomy? Things you wish you knew prior to your craniotomy? Anything I should bring/avoid in my hospital bag?

Like, ladies, should I get some front clasp soft bras? My MIL is coming into town to help, and I don’t want to be flopping about.

It’s been pretty lonely these first few weeks after the accident, so I’m really thankful to have found this community. I am totally freaked out and am grasping for some bit of control over this very out-of-my-control situation.

Thank you in advance for any help!

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Hi @Sippie911,

I am so sorry about your diagnosis, and all that you have to manage . .. on TOP of being a wife, a mom of an 18-month old, and all the other life drama! That alone is enough (!), so it must be extremely frustrating to now add this to your plate as well.

But, in some weird way, I also rejoice all that you have because - as you said - you have too much life to live. You can tap into that anger and frustration and let be your motivation for your upcoming battle.

In full disclosure, I ruptured, and most of my repair work was endovascular, so I did not have a crainotomy, so I can’t give specific advice on that. Besides my endovascular procedures, I also did have a couple of separate brain surgeries (hair is still growing back from the 2024 procedure!), so I can speak to life post brain surgeries more generally.

First, you are doing the right thing by planning and preparing. Do whatever makes you comfortable, but think about food, clothing, etc.

I don’t know about crainotomies, but endovascular, I am under weight restrictions, so, e.g., no lifting over 5 pounds for a time.

I found a Kaiser Permanente post-op procedure guide, so you may wish to review in advance so you can better know what you are prepping for, although, of course, your doctors’ will have different instructions custom for you.

Post-op for me, I was also not allowed to bend too, so what adjustments did I need to make to feed my fur baby, etc.?

Throughout my experience, I was encouraged to take up meditation/mindfulness to help in managing stress. My wearables do show that it really does help, so if you are curious they are lots of options out there to try until you find one you like! Several of us are fans, so we can make suggestions if you wish.

Just one super quick trick is Box Breathing, and I am linking a quick video on it for you. Repeat as often as you need, but I understand anecdotally that Navy Seals use box breathing too it is so effective in managing stress!

Most importantly, please know that you are no longer alone in this fight, as we are all standing right here with you. Whenever you need to vent, ask questions, or commiserate, we are here with you. Please do not hesitate to reach out

I will be holding you in my thoughts.

Fin Whale Fan :whale:

P.S. Through one of my meditation apps, I recently learned of another organization that targets folks with brain injuries! They (Love Your Brain Foundation) have a free library of 150+ Meditation & Yoga sessions (free registration required, with some paid sessions as well). Full disclosure, I have not tried any of them myself yet, but just wanted to give you another option that may be a little more under the radar.

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Hey Steph! Ok so I had to giggle out loud when I read about getting a front clasp bra. My MIL was a wonderful woman who really wouldn’t have cared. I miss her dearly. You brought back some wonderful memories of her, thank you!

Like @FinWhaleFan, I’ve only had endovascular procedures, my aneurysm wasn’t a good candidate for a craniotomy due to location. But I found that out years later after I ruptured. I do suggest to members before a procedure to get their house and House in order. You won’t be able to do any heavy cleaning for a while so get that done, yard work as well. Easy meals or have your husband do the cooking. I also recommend that folks get their wills and other paperwork done they are important and need to be dressed before rather than later, I realize a lot of folks don”t even want to think about it, but for us it is one of the many risks you will sign off on saying you understand. To me, whatever I can control, I like to control, so that’s one no brainer thing, pun intended. Comfy clothes is a must, but if it makes you feel better get the bra with the front closure hooks. House with the capital H is whatever you’re spiritual or religious belief are, never hurts to check in.

Most of us have to have an adult stay with us for minimum 24 hours after we get home. With a toddler, you might want someone to stay longer. Those little ones can sure be a handful and energy for you may be down quite a bit after a craniotomy is my guess. Maybe a week or two, I sure hope someone who’s had a craniotomy comes and gives their experience. Oh and I think if it makes you more comfortable, get a couple bras with front closures hooks to keep the girls contained. You might want to ask your husband, he does know his mom the best. Mine was a bit more prim and proper than my MIL, I don’t think she’d have cared.

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Hey @Sippie911 ,

I’m Merl, I’m a member of the modsupport Team here on Ben’s Friends. I don’t have an annie but over the years I’ve required a few neurosurgeries (including craniotomies) to deal with another little nasty growing in my head. I narrowly avoided my 7th neurosurgery, another craniotomy earlier last year.

My initial plan was operate, recuperate, then back to ‘life’ and for the first few surgeries that’s what happened. Each operation has hit me harder and HARDER, with the last couple wiping me out of commission (I can no longer continue in my career) and that’s been a VERY bitter pill to swallow. I know that ‘mad’ you speak of. I was angry at the world and everybody on it (especially myself, as if I had any control over it all). I think one of the hardest things, especially for a control freak like me, is admitting I had zero control over ANY of it. I had to hand all of that control over to the medicos.

I was my own worst enemy, I tried to force my recovery to happen ‘quicker’, to push my body’s limits. P.S. You can’t recover quicker than your body allows. I pushed too hard, too soon. Something went ‘POP’ and I woke up on the neurosurgeons table again. DON’T DO THAT!!!

Listen to your own body, it will tell you when you’ve reached your limit. Don’t push it. Now is a time to be kind to yourself. Slowly is a word I hate, but it’s something I’ve had to learn.

I think the old Boy Scout motto of ‘Be Prepared’ is a good one. Some people can go through surgery, come out the other side thinking “Well, I don’t know what all of the fuss was about…” with very little in the way of side effects or recovery issues. But then for others the outcome can be catastrophic and life changing. We ALL hope for the best, but prepare for the worst. And that’s what I did ‘prepared for the worst’.

I sorted my will out, had it all updated. Gave my wife medical power of attorney, ‘If I end up needing a machine to live… …turn it off’. Made sure all of my insurances were in order. This may all sound rather morbid, but I didn’t want my wife being left with debts and no roof over her head. My view was “What if…?”. What if I need fulltime in home care…? What if I’m bedbound? What if I need specialised mobility devices? What would that cost? Thankfully, I can still walk, talk and wipe my own backside, but I set about looking at post surgery services/supports BEFORE my surgeries.

Starting from zero, trying to initiate services, whilst you are trying to recover can be a nightmare. Investigate what services maybe available now, before you need them. Speak to the hospital. Many of them have a social work dept attached. They will know the sorts of services are provided both by the hospital and local community services. For example, I live rural, my local council has a medical taxi service to take people to and from hospital appointments. Try to utilize the services available to you.

Merl from the Modsupport Team

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Hello Steph,

I am so sorry that you have to go through this. You are very young and you have a toddler to bring up. It happened, so all you have to do is gather all your strength and have faith in the medical team, yourself, and God!

I ruptured on November 15th, 2018. I was 46 years old. I woke up with a headache, I went to work and by 9:30 am I had to go to the hospital. The CTHead showed that I had a ruptured aneurysm. I had the surgery done the following day. Craniotomy was decided.

I won’t go into details since I know that you are anxious to know about healing after the surgery.

The surgery went well. It lasted about 5 hours. I was kept in ICU for a week and then I was transferred to another room for four more days.

Here are some of the things that you should know and helped me a lot. First of all, it was finding this group and following the advices from group members. From these members I learned to stay hydrated (warm water throughout the day and I have kept this habit since I had the surgery), eat food that provide proteine, go for walks with a family member or a friend, be patient and give your self time to recover. Make sure to keep your blood pressure under control, I stopped drinking coffee and tea for few months because I couldn’t sleep well.

I had moments and days when I would feel anxious. Meditation helped but what really helped me was going for walks. It was winter but I would be out walking with my husband or my girls for hours. I would be out walking as early as 7 in the morning, or as late as 10 in the evening. It was worth it!

One thing that I would like to tell you is ASK for HELP from your family members and your friends. Do not accept people to know what your needs are. You have a toddler so you definitely are going to need help. Your mother-in-law is going to be your saviour. She won’t care about your bra😃.

Please let me know if you have any questions. I am sure that other members will share with you their experiences and what worked for them.

I have a good feeling that all will go well. :folded_hands:

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Hi there,

I am sorry to hear about your diagnosis (and your accident!)

I had young children when my aneurysm ruptured (6 and 9) and can relate to how you are feeling. When I ruptured they found 2 more I ruptured aneurysms and so I spent a month in the hospital having them all treated. Once one has ruptured they are more aggressive in treating any un ruptured Annie’s.

My rupture was treated with endovascular coiling but my second treatment was a craniotomy and a clip.

While it’s probably terrifying to be facing a craniotomy at this point in your life I will tell you the best news in what I’m sure feels like a s&$t sandwich is the fact you did not rupture.

the surgery is so advanced now, my recovery was a lot easier than I expected I woke up with a black eye and a bandage at the front my my head (surgery was on my MCA aneurysm)

The recovery was smoother than I expected too I can’t give you details because that whole month is a bit of a blur. I was lucky that I happened to know my surgeon from childhood (!) but the surgeons are all fastastic

Tips are to get up walking as soon as you’re able it will greatly speed your overall recovery. Do all the physio.

The clip is actually good because it’s unlikely to need repeat treatment, as I have with one of my coilings.

I am happy to say 3 years on and I’m very well.

I wish you all the best and if you have any specific questions please shoot them my way!

Hugs

:purple_heart::purple_heart::purple_heart:

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I’m so sorry to hear you’re going through this. I’m 39 years old, also a mother, and had a craniotomy 18 months ago to clip an aneurysm. I have lots of good things to say, and can hopefully offer you some hope. If you want to find a way to exchange numbers or emails, we could possibly arrange a FaceTime? Might be easier to chat than to type it all out haha.

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You can always send a PM and converse privately by clicking on the member’s avatar. You see something like “message” in a bubble or send message, I’ve forgotten which this morning. Click on it and no one else can read what you’re writing.

Although I understand why you want to do FaceTime, I would ask you both to think about how we support each other here. We do that by sharing written words, obviously. If we can’t write down what we are needing/feeling/ etc, how do we help each other and ones we will never meet? There are also other platforms, Zoom comes to mind, if one doesn’t mind sharing their email address rather than a phone number. There’s also the old Social Worker saying get to know each other before exchanging personal information.:joy:

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Still undecided so waiting fir next mri after 5.8 ba found in December. Mri scheduled for Jan 2026. Should I be afraid of flying? Common sense limitations but im a very busy person and sometimes dont know my limitations. My dr said if I want to wait and watch then just live my life as normal as possible.

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That is such a good point. Thank you for the reminder! Others seeking support can then read the written word:)

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It has been one year since my craniotomies. Big one on the right and 2 days later the sister ones on the left. A 3 day visit ended up almost 3 weeks. Why? My docs knew I had no one to help care for me after this. I went straight from hospital and into an air bnb.

The most problematic symptom after 1st surgery on right was throwing up so bad I thought my guts wanted to come out. But they are awesome my docs ant Swedish Cherry Hill in Seattle. So with assistance of anesthesiologist they gave a different anesthesia for the next 2 surgeries 2 days later. And we’re sorry they were not given a map from neurology department from which I came from on the first surgery which caused a lot of nausea too.

Once home I lost 20 pounds within 2 weeks. I struggled getting up and down stairs to eat. And I didn’t notice at first I had lost my smell and taste. So the protein shakes tasted like chalk.

I agree with others and make sure you have good help with baby for awhile after. And for now keep busy in the now with baby. Most of what we fear doesn’t even happen. I wore hospital gown for the whole stay while in hospital. But once home and traveling 3 hours on plane to return home I adjusted to comfy sweats.

I am so glad you found this group. I didn’t until almost a year later. And can honestly say this is your new tribe young lady. Keep being authentic and yes emotions are that realness. Your anger - validate it…

Mary Lou

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@MLK @Moltroub @FinWhaleFan @JackieRo @ModSupport

Thank you all so much for your notes and support. I can see the similar themes throughout your thoughts. I cringe as I read them because I hate asking for help, taking it slow, and being kind to myself. It feels like maybe this moment in my life is meant to teach me that.

@LauraE Oh wow. A month in the hospital is so scary but I’m glad to hear it was a bit of a blur! Yes, my doctor mentioned that I’d leave with a swollen face and blackeye, which made me laugh when I saw the aneurysm episode of Grey’s Anatomy and the pateint had a dainty little, perfectly white bandage after her craniotomy. (I know Grey’s is fiction, but much like watching Call the Midwife before having a baby, I call it my exposure therapy.)

@ModSupport Your little nasty sounds tough, but you sound relentless!! Thank you for your thoughts and reminder to take it slow. And tes, the Power of Attorney and Do-not-let-me-be-a-vegetable paperwork was a pretty morbid task for our two-year-old marriage, but I’m so glad we did it. He’s very clear on my wishes, and our daughter is protected, just in case.

@sammy1 Wow. Such a journey. We live right near the beach, so I’m hopeful there will be quite a bit of walking in my recovery future.

@JackieRo I’ll send you a PM. Tons of questions for you :slight_smile:

@MLK Thank you for the honest report of your post-surgery effects. I feel like if I know these things COULD happen, then if they do, I won’t be so freaked out. I know everyone is different, I just want to be prepared.

For those in the craniotomy club, did they shave the side of your hair or work around it?

Thank you again to everyone!

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Oh @Sippie911 …I completely understand that as well! I was the same way pre-rupture myself …I have learned from my experience to be kinder to myself and not so rushed all the time. From that odd perspective, it has been good for me!

I will let the crainotomy folks chime in, but as mentioned, I have had to have my head shaved twice for other brain surgeries. I was mentioning this to an interim haircutter, and she said, if you know in advance, we can shave it for you. I mention that, because, well, yes I did get the t-shirt!

I am in awe of my neurosurgeon/neurosurgery team …they are absolutely incredible! However, the one thing they don’t do well is haircuts, in my own experience. :rofl:

Hopefully you won’t have to worry about that, but something to keep in mind if you do.

Sending healing energy your way!

Fin Whale Fan :whale:

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OHH HELL YEA!!! And don’t I know it.

In my previous life I was a teacher, teaching people with disabilities independent living skills. All of the stuff that most people take for granted. To then become the person with a disability… Ohh, no way, I didn’t want to accept ‘THIS’ and I fought against it. Bad idea, the more I pushed myself, the more my body pushed back. I was my own worst enemy. I can say that now but at the time I’d convinced myself I was building stamina by pushing those limits. To be honest I couldn’t see it, it was my wife who could see what I was doing, driving myself into the ground and she sat me down and simply told me “Stop it”. In hindsight (and as much as I hate to admit it) she was right. I was fighting it, but the reality was I was only fighting with myself. A bit silly when I think about it now. But the acceptance of it all, that was difficult. I was always the helper, not the one who needed help and yet here I was. My last major neurosurgery was back in ‘13 and some days I still battle that ‘acceptance’ thing today. As I’ve often said to others:

  Some days I can leap a tall building in a single bound, 
  But then some days I'm lucky to even crawl out of bed. 
  I never know what today will throw at me, 
  I just have to be prepared to manage it all and no 2 days are ever the same.

If anybody EVER tells you this journey is easy or simple, they have never been in this position themselves. So, how would they know? We know this because we’ve lived it too.

Merl from the Modsupport Team

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We have lots of topics covering flying. I flew several trips across the USA before I ruptured, guessing I had the aneurysm then. If the doctor said to live your life if on the W/W list, I’m stubborn enough to do it. But for piece of mind and talking to a medical expert, I suggest calling your surgeon.

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It’s fantastic that you’re able to recognize life’s teaching moments! You go girl!

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Yes of course the surgeon said I can fly.

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Oh good! I wasn’t sure when you asked if you should be afraid to fly.