Post Craniotomy Symptoms

[Callumsully]

So I had my craniotomy on Wednesday afternoon to remove a 4.5cm low grade Glioma in my right temporal lobe that I was diagnosed with in October.

My surgeon was happy with the procedure and the MRI the next morning showed that he fully resected the Tumour, I was discharged from hospital pretty quickly, the next day actually as my surgeon said he was happy for me to go home and begin my recovery. I've finished my course of steroids that they gave me, and I'm still taking Keppra (which I have been since October) for my Temporal Lobe Epilepsy caused by the tumour.

It's now 5 days post surgery and I'm struggling to get back to "reality" like I know who I am and what my life is but everything feels off, like I'm stuck in a dream and haven't fully woken up from my surgery as me.

The pain of the wound isn't too bad, more of a dull ache that paracetamol and codiene isn't hitting quite like the morphine was.

I feel more epileptic than I did before surgery, whilst seizures aren't as harsh, I do feel more genuinely out of touch with reality.

Hoping this will subside in time, I could sleep for hours, but in honestly bored and irritated

Waiting to hear from my biopsy report and having a district nurse contact me to have my stitches removed isn't helping my anxiety as I want this to all be over but I know it isn't the end of the journey yet

That being said, I am physically ok. I don't feel sick, I do have an appetite and I have no signs of fever or infection.

It's just the seizure side of things but I guess I just had my brain cut into so it makes sense.

Wondering on other people's experiences on how long these symptoms will last and what should I do in the meantime? Any brain training apps or something to keep me occupied?

[Cedarmarie Community Champion]

Hello, so glad to hear the surgery went well, great to hear! I can't give you any first hand hints and tips, but I recall my sister post surgery feeling similar to how you are describing. You are only 5 days post surgery, so go easy on yourself would be my 'non-medical, what do i know really ' thoughts! Best wishes!!!

[Callumsully in reply to Cedarmarie]

Appreciate that. I have my follow up tomorrow afternoon to check on my post surgery results, biopsy etc so can ask the team then regarding how I'm feeling seizure wise

[Cedarmarie Community Champion in reply to Callumsully]

Hope it went well!

[Callumsully in reply to Cedarmarie]

Confirmed it was Grade 2, some remains but it's up to me if I want to have Radiotherapy now or hang back with MRIs and wait it out as treatment could cause more harm than necessary at this point

[Cedarmarie Community Champion]

Hi, good to have some control, but I can imagine a tricky decision to make. Very best wishes to you !

[meningiomajuzzy]

Hi Callum

My Craniotomy was a year ago last November. it took me months to get back to feeling myself. I had a bad reaction. to the steroids and Keppra, I was super manic and had seizure activity all over the place. I found that a month after I stopped steroids, and also switched from keppra to Lacosamide, I started to feel myself and could begin my recovery.

my Instagram is meningiomajuzzy if you want to have a look at my journey, you may see how manic I was.. I still get embarrassed. 😅

take care and give yourself time

Justine

[Hollowhead]

Regarding post op seizures, I was successfully weaned off medication in January this year, but was ambulance to A & E having a severe seizure on April 6th and admitted to hospital for 3 days. Am home and on on meds again. Hit my head on concrete where surgery access was, had concussion for about a week. Fatigue has returned so taking life slowly again.