I had a craniotomy 7 weeks ago to remove a large meningioma. My head feels like it's being squeezed constantly. I'm also having issues sleeping it feels like the titanium plate is digging into the sides of my head. I lost my sense of smell years ago but now I can smell a weird smell alot of the time too.
Has anyone else experienced this or similar please.
Thank you
hi Mason, I’m sorry you are having these problems post op. Have you spoken to your neurosurgeon about it? If not, I think it would be good to phone and speak to the department. When I had my craniotomy done I found that the specialist nurses in the department were very helpful in dealing with any queries and getting me through to the neurosurgeon for his opinion.
Regarding sense of smell, I lost my sense of smell for a while due to another health issue, and just before it started coming back I started feeling as though I was smelling burnt toast all the time.
Have you tried joining the Brain Tumour Charity Facebook forum for meningitis support? That gets a lot of UK traffic and you might get some more replies there.
Wishing you all the best for your recovery.
Thank you so muchI have an appointment with the specialist nurse on Wednesday and a MRI on the 2nd February
Hi, this must be awful for you.
I’m 4.5 weeks post op for three meningiomas. I still have swellings that come and go and dreadful headaches that also come and go. I was sure I could feel a screw sticking out a couple of weeks ago ! but happily it has now vanished.
Do please contact your specialist nurses. I have done so 3 times already and have been reassured on each occasion. They can also step in if they feel anything really needs further attention.
My taste and smell are both much reduced at the moment. I have only noticed this in the last couple of weeks and hope they both return soon.
I wish you well with your recovery.
Hi Mason, I'm just coming up to 7 months post craniotomy. For the first 12 weeks I would go to bed at 10pm and I would wake up at 1am, 4am and 7am as regular as clockwork. I would give up at 7am and get up but it was the middle summer. I would also have a sleep for 1-2 hours in the afternoon. Continuous sleep didn't come back to me until week 12/13. Now I'm sleeping from 10pm until 9am which the surgeon says is too much sleep.I didn't feel squeezed, I felt stretched. The hole in my head was large and I lost a large area of dura, the water tight layer around the brain. I therefore have CSF leaking and collecting on the side of my head, pseudomingocoele.
I did a patient access request for my post op CT scan, it was easy to do. I just needed to up load my passport and utility bill to prove who I was and the scans were available online within 30 days of the request. I found this helped me to make sense of my new head, where my original bone ends, where the screws are, how much gap there is around my resin replacement.
As others have said contact your tumour nurse about your symptoms. I was told I would get a 3 month follow up, this didn't happen until 6 months for me.
Best wishes.
Thank you so much. I have an appointment on Wednesday to discuss it with the specialist nurse and a MRI on the 2nd February.
Are you feeling better and recovery well now ?
I'm progressing as expected??!! Who knows what that really means. I have been lucky I had no head aches before or after the op, just a cracking black eye that was painful, it was the first thing I complained about when I woke up. Energy levels are still not what they were, I can still only do one activity/social engagement per day. Christmas wiped me out. I can manage most household tasks, but still struggle with things at floor level like cleaning the shower tray or cleaning the oven. The surgeon tells me I am not to get out of breath so Im still plucking up the courage to try some jogging.
I'm also fortunate to be on a good contract with my employer, so I haven't felt like I have been rushed back to work and I start my phased return in February.
My brain didn't really wake up until 5 months post op, auto pilot tasks were fine.
I filled my time with jigsaw puzzles, these can usually be picked in the charity shops for 50p to £3. Audio books via your local library/borrow box are free.
Dr Rangan Chaterjee has a load of podcasts on his website from sleep and brain experts, Mathew Walker, Russell Foster, Satchin Panda, Rahul Jandial and Lisa Mosconi.
Don't look up at the mountain, focus on the next base camp.
Hi Mason
I had my meningioma removed and titanium reconstruction in place of the sphenoid wing into which the tumour had also spread. Reconstruction is still a hotly debated topics among the Neurosurgeons - when mine was first placed, it was too small to allow for swelling etc and it ended up causing me a lot of issues, including very high pressures in the eyes. Mine was readjusted, and whilst better, I still experience issues with swelling and pressure, resulting in headaches. You should speak to the neurosurgeon - it may just be your body 'reacting' to something that really shouldn't be there and with time will subside. It may need some tinkering. But certainly raise this.
With respect to sleeping, are you still taking steroids? These will interfere hugely with your sleep, and your heightened awareness and perception of pain in the region of your surgery may make it feel like this pain is more intense (there is a huge psychological element to pain that can heighten our senses).
Certainly something to raise with your neurosurgeon, or speak to the neurosurgucal nurses about.
Hope your recovery goes well - it's never linear, be ready to feel great some days and terrible on others.
Sending the best
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