Ongoing pain post crainiotomy

[Shintydaft]

I'm new here ...

I had a significant crainiotomy to remove a large dermoid cyst putting pressure on my brain about 14 weeks ago and after the initial 4 or 5 weeks of sleeping most of the time felt really good and started to get out and about and even a little light training on my turbo trainer.

This all turned sour a few weeks later when I started getting tremendous headaches that were like my head begin in an ever tightening vice and ended up back on stronger and more frequent painkillers than I was on after discharge from the hospital coupled with anti-inflammatories.

I was told this was due to the muscles and nerves re-forming in my head and although the majority of the pain in under control I continue to have a tingling sensation across my head almost constantly but in particular when I have anything pressing on my head be it the stem of my glassess, pillows at night, wearing a hat, ...

I was at my consultant yesterday and he said that many of his patients have similar stories where they have an initial honeymoon period only for it to turn into longer term pain that can last for 6 to 12 months.

This is causing me much anxiety and I currently can't see me getting back to work or being able to enjoy or do the things I use to do prior to the operation e.g. cycling, going to the gym, supporting my local football team, .......

Does anyone relate to this experience ?

Is there any advice that you you can offer ?

Many thanks

[Shon48]

I had a 28mm aneurysm repaired in June 2018. Had to learn to walk again . I thought I was doing okay, managing to get out and about with my walker . I’ve taken a massive drop since may this year . My yearly scan showed that the beast is still contained but is pressing on the nerves on the brain stem. This has caused me to be very dizzy and nauseous and I’ve been stuck in bed for three weeks. My consultant doesn’t know what to do as he has never seen as large an aneurysm and the patient still alive a year later . I hope it passes and for you too. Take it easier and just a day at a time then when things go wrong you won’t be so disappointed in yourself .🤗🏴󠁧󠁢󠁳󠁣󠁴󠁿

[Shintydaft in reply to Shon48]

Hi, thanks for your quick response. I guess having had a pretty active lifestyle and then having the brakes put on this I'm struggling to come to terms with it and obsessing over the time it will take me to recover and return to 'normal', whatever that is.

It looks like taking is easy and tiny steps is what I need to accept for the time being and thanks for your advice. I also wish you well with your recovery as you seem to be having a tough time - take care !

[Shon48 in reply to Shintydaft]

I was the same with the active lifestyle, it’s taken me a long time to accept that I probably won’t ever be the same but I’m determined to try my best. If I could be rid of the dizziness and sickness I would be on my way again . It’s very frustrating but my age (65) is going against me . If I hadn’t been so fit the neurologists would have left me 😔

Keep your chin up and praise yourself whenever something goes right . Make a goal to reach every month and good luck 😉🏴󠁧󠁢󠁳󠁣󠁴󠁿. Shona

[cat3]

Too much too soon Shinty ! At 14 weeks (and after a craniotomy )your brain is still adjusting to the trauma, and trying to heal so far as is possible. I winced when I read the word 'Turbo trainer' because of both the physical exertion and demands of the screen stimulus.

Slow things down for a few months and stick to walking for exercise if you want to boost recovery...………. attempts at rushing recovery usually end in lost time and energy anyway !

Take care x

[Shintydaft in reply to cat3]

Hi Cat, thanks for your feedback. My consultant did sanction the light turbo training but looking back I was probably doing too much. I had stopped all physical activity when the headaches returned and my GP suggested the same as you i.e. keep my activity to walking for the time being, although living in Scotland in October will be a challenge

I guess I now need to get over my impatience and take it easy for the next few months.

Thanks again for your advice. Sometime is takes input from other who have been through this sort of thing to really take it on board.

[Tracy331]

I'm 5 nth post op I'm in same situation I was doing great even mowing garden looking after grandkids but last month my head feels like it explodes tighten scalp hypo sensitive I struggle doing anything but I relish the good days I learnt taking it slower stops the hurting I'm coming to terms with not being able to do what I could I understand the frustration anger but it lessons when you do that bit extra each week give you're self time to heal and enjoy the victories that you achieve when not in pain you're brain is telling you to slow down it can't cope you will get there xx

[Shintydaft in reply to Tracy331]

Sounds like we are almost on the exact same journey and thanks for the encouraging words. It's clear I need to reset my expectations and take is easy for some time.

The frustation/anger you mention has occurred with several spontaneous outbursts in the last few weeks which is out of character.

Consultant says this can occur as it was a frontal lobe cyst that was removed and I'm hoping this is just short term until I'm feeling better.

[Tracy331 in reply to Shintydaft]

Hopefully it will take care x

[Harrys]

Hi my son was 13 when he had two craniotomys. He had a brain abscess. His now 20 and lives will pain daily . I was hoping time would be a healer but it hasn’t been in my sons case . I am still hoping though . We went doctors yesterday for more pain killers we didn’t see his normal doctor who was limiting them to 20 tablets a month and 15 mg co co domol she has up it to 30g and given him 120 tablets !!! I was pretty shocked . There’s lots of things you can try for pain my son has tried a lot !! We are waiting to see a professor of migraines been waiting since June for appointment! My sons damage was the frontal lobe . Yours is such early days just take it easy .

[Shintydaft in reply to Harrys]

Thanks for your supportive words and if you are reading my other posts/replies you will realise that I have grossly over optimistic expectations of where I should be with my recovery.

My consultant indicated that recovery would be 6-8 weeks post op but it was not until I was at my GP for the new headaches that she explained that this would only be the initial post op recovery of initial pain, scar healing, etc and then it's only after that that the brain, muscles and nerves start to really heal.

As you say it's early days and I now plan to take it easy.

I wish you and your son all the best and hope you find a way forward once you see the migraine professor.

[Harrys in reply to Shintydaft]

Thank you 😊