Post craniotomy symptoms

General
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Hi guys!

I had my surgical clipping 5 weeks ago now and overall I am feeling much better in comparison. I can go on walks outside of around 1-2 miles without feeling overly fatigued which i feel pretty great about :). Obviously every day is different and I’m trying not to push myself too hard. However, ever since the surgery I’ve been having major issues with my sleep. I wasn’t really an insomniac and tended to fall asleep and stay asleep easily before I found out about my aneurysm. Post surgery at first I just thought not being able to sleep was a side effect of the pain meds and anaesthesia. Now it has been so long that I am no longer on any meds and I’m still having the same thing. Some nights I lie with my eyes closed for hours until 5-6am and then I just give up on trying to sleep. Other nights I can get to sleep but then I wake up intermittently. It’s really annoying because the main advice for recovery I’ve been given is to sleep and I can’t do it!

I’ve also noticed a massive change in my mood. This whole situation has been very stressful and a bit shock for me, but now I’m past the surgery and into recovery I’ve felt a lot calmer in some ways since a lot of my worries have been quelled. But i’ve noticed that I keep feeling very very anxious and/or sad for seemingly no reason. I’ll just be sitting at home watching tv or reading, trying to take it easy and I’m overwhelmed with all of these big feelings out of nowhere.

I just wanted to see if anyone else has experienced anything similar, and if they have any tips to deal with this. It would be much appreciated.:pink_heart:

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I never connected the dots of my lack of sleep with the A, though it could make sense. Stress is a very basic and very applicable reason. Though a survivor, there may still be fears and concerns about what the future is or will be. The recommendations of exercise, no alcohol, late coffee, or cigarette, and minimizing stress really are applicable; but I also wonder if it is more. Perhaps a fear there is not enough time in life to get everything your desire accomplished? Personally, I am still not a great sleeper (while writing this at 1:25 AM!), I have found that changing to a less stressful job, having only one cup of decaf coffee in the morning, doing more exercise, and probably most importantly giving myself permission to put aside my to-do list and accept the importance of sleep has helped. I still am not great or consistent, but better than I was.

Good luck!

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Sadie, I haven’t had a craniotomy but my best uneducated guess would be you need to give yourself a bit more grace if you will since I can’t think of a different word. I’m figuring the surgeon cuts through some brain tissue to access the artery which means your brain needs to have some time for the tissue to heal and for the neurotransmitters to reconnect, but it’s just a guess.

I’ve never in my life been one to go to sleep as soon as my head hits the pillow unless it was pure exhaustion. Things @KrysG suggests are great, I should follow more of them. After I ruptured, I found any caffeine after 2:00 pm would interfere with sleep. Except for the rare cup of hot tea, or iced tea if we have gotten a sandwich down the road for lunch, stop caffeine intake in the morning.

I have always read in bed before I sleep since I shared a bed with my big sister. I used a flashlight so my mom wouldn’t fuss at me. When we finally had our own rooms, I still had to go to bed when she did and still used a flashlight to read. Thank goodness my parents bought a different house and I could use the lamp​:joy:. The experts say it’s wrong to read in bed before falling asleep. For me, it helps my brain focus on something non related to me.

The best thing I’ve found is to do relaxation breathing. It causes me to focus on the breathing itself and not anything else. Perhaps if you can identify your initial physical trigger such as gritting teeth, clenching jaw, making a fist, tummy tightening, tapping foot or feet, you could start whichever breathing technique you like. Some folks find nature sounds helpful, some use apps with guided meditation or imaging helpful, others like soft music.

My mom was told to take melatonin OTC by her PCP which worked for her. Always check with your doctor first.

I hope you get more responses from our members, I’m sure they can come up with better suggestions.

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Hi @Cs5rd1e0 -

That is great to hear you are doing so well post-clipping! I am especially proud of you for trying not to push yourself too much!

Admittedly I am just a fellow patient and without any official expertise, but it seems reasonable to me as a layperson that you are dealing with some emotional issues after your experience; it seems quite normal and to be expected as you are dealing with having had your life overturned! Having an aneurysm diagnosis is a scary thing - flat out!! Admittedly this is from our friends in Singapore, but I liked it as it was patient-focused (and not a medical study).

Alternatively, keeping all things local to you, this is via the Hereditary Brain Aneurysm (UK) that has some online guides - thinking of the Living with Anxiety as an example where one of the pillars is one’s mental health.

Helping to manage those emotions by talking it out - with us, with counselors - all super important! Please use us as much as you need and reach out to your medical team as well!

Finally, yes, sleep! Not helpful to know how important it is, as then our monkey minds obsess on how we should be sleeping which causes us to stay awake, right?!?! Sometimes our brains don’t cooperate. A wee bit back, @Moltroub asked me to gather some of my stress reduction techniques so I am linking to the post where I started a list. You may want to take a gander and/or add others if you know of them to see if it helps you.

In addition, anecdotally, I do find that regularly practicing meditation has helped me improve my sleep. I found this one medical study that at least begins to support that notion.

Additionally, there was moderate strength of evidence that mindfulness meditation interventions significantly improved sleep quality compared with nonspecific active controls at post-intervention (ES 0.33 [95% CI 0.17–0.48]) and at follow-up (ES 0.54 [95% CI 0.24–0.84]). These preliminary findings suggest that mindfulness meditation may be effective in treating some aspects of sleep disturbance. Further research is warranted.

Post rupture, I was on some medication that helped me to sleep, but if it is not something your doctors recommend it isn’t exactly something you want to run to take (gabapentin) - again, that’s a layperson talking. If you are really having issues, you may want to mention that to your medical team as they will understand how important sleep is to your healing!

Thanks for keeping us posted on how you are doing! Let us know what we can do for you!

Fin Whale Fan :whale:

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Again you provide us with some wonderful information, thanks so much! For our members who also are as curious as I am with @FinWhaleFan links. The “gentile exercise” is Walking, Tai Chi, Qigong and Yoga per AI and found this https://www.myheart.org.sg/healthy-living/get-active/ it has a link to a 30 minute workout on YouTube; this has some good articles https://www.bswhealth.com/blog/low-impact-exercises-joint-friendly-workouts-to-try.

If you find papers on research or research itself, scroll down to the findings, conclusion or discussion section if you start to get lost in the medical jargon or overwhelmed with the statistics.

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I never connected the dots either - I felt like I slept very little in hospital but blamed the “weirdness” of my skull creaking and popping as what kept me awake. Plus hospital’s aren’t very comfortable or quiet.

Once I got home, I didn’t sleep well either but blamed stress (we were selling our house), and/or menopause (I was 50ish and many women have trouble sleeping) and ageing in general. Maybe I blamed everything except the aneurysm/craniotomy​:thinking:

I still don’t sleep like a log like I used to when I was younger, but it is definitely better than the first year post-surgery. Hang in there.

In the first year afterward, I do remember sometimes feeling unreasonably overwhelmed by little things. Maybe we need time for our brain to adjust and reorganise itself after such a momentous event, and any little thing “tips us over” (not a very scientific viewpoint!!).

On the whole I didn’t do anything specific to cope with the sleep or emotional things - I was as sensible as I could be - tried to keep regular hours, exercised, avoided too much coffee,

I did remind myself whenever I’d had a bad day or bad moment, that on the whole, I was getting a little stronger and a little faster both mentally and physically with each week that passed.
I also reminded myself whenever I had a little panic “this too shall pass”. I didn’t handle stressful events well at all but that improved as time went on. (Sorry, again, no huge tip, just the mantra “this too shall pass”).

It’s hard to be patient, but 5 weeks is still a relatively short period in your recovery.

Once I could walk up hills, walking with a fit friend (who is a bit of a no nonsense toughie) and talking to her about interesting topics and current world events and news (anything other than aneurysms!) was also very therapeutic. Mostly she talked and I huffed and puffed:) The mental and physical stimulation at the same time felt like “brain training” and I enjoyed it.

Well done on the 1-2 miles walking, by the way!! Keep it up, and thank you for letting us know how you’re progressing​:folded_hands:

Nat

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Having a clipping surgery even if you didn’t rupture will do at least a little damage. The artery affected will be in a “region” of the brain. You can google your artery that was clipped for it’s location region of the brain. Then research side effects that result from any damage to that brain region. For example my damage was to the right posterior communicating artery which is a part of the Hypothalamus, Thalamus, Optic, Mammillary Bodies. My linging main issues are vision & blown pupil, short term memory, insomnia, fatigue, tinnitus which are all affected by damage to these brain regions. They have all improved over time (years not months). Mine was worse because I ruptured in 2013, coiled, then same one clipped in 2017. That said I’ve learned to manage the issues that linger. Exercise helped me the most. Then get plenty of rest without meds if possible. If your issues don’t start improving let your doctor know. I couldn’t walk more than 10 min at first but 2 yrs later I was able to complete a 7 mile hike at high elevation in the mountains. I’m in my 60’s. It takes time and persistence. Best wishes to you on a smooth recovery.

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Sadie,

Hi. So glad to hear that you are feeling better. I also struggled with insomnia following surgery for about the initial 5 to 6 weeks. Considered obtaining an anti-depressant because I was experiencing an emotional roller coaster. I discussed with my PCP and he checked my hormone levels. I did have high testosterone measurement. It my understanding that can impact emotions and sleep. I am trying to address through diet (legumes, nuts, seeds, etc.), along with walking daily. That and time seems to have helped. I am sleeping better and experiencing less emotional ups and downs - I am waiting to find out my latest follow-up lab results.

The entire experience can be overwhelming. It has helped tremendously knowing that I have this group that relates.

Please keep me updated on your progress.

Jan

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Hello,

You have had a major surgery and I always find that the anesthetic affects my mood etc for a long time. Sleep is a good healer but be careful not to stress yourself if it is not happening. You will sleep when you need it.

Take care of yourself xxx

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