Craniocervical cyst

Hello everyone here's my story.

I was rushed in hospital aprox 8 weeks ago where it was discovered I had a larg cyst attached to my lower brain and spine.

I was operated on the next day where they made a far lateral approach for excision of the neuroenteric cyst.

For the first few weeks I felt quite ok but then started to struggle with it all.

After having 60 staples removed I finally realised how huge the scar was and how dangerous the operation had been.

The side my head was operated feels completely numb and even though I take cocodamol it feels quiet painful .

I'm a very active man but find it difficult to rest but I seem to be very tired and very panicky all the time.

it's getting close to my sick note ending and I don't know what to do about work due to my current symptoms as my partnerhas been amazing but I don't want her seeing me stressed and worked up .

There has been a total lack of support from hospital so far so any advice welcomed.


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15 Replies

  • Hi and welcome, 

    My usual advice about this sort of thing would be to contact Remploy - they were amazingly helpful when it came to work issues that I had after my CVST. They help disabled and newly disabled people return/start work and can advise on all sorts of things. They were also the ones to suggest the community neuro rehab team - also a great help - my GP hadn't referred me automatically. :-(   If it were me - I'd call them both today - get the ball rolling before the weekend.

    And headway of course . 

    Is it worth seeing your GP again before the weekend or getting a phone appointment to discuss pain relief ? I was very pleased to swap the tramadol for amitryptaline after a few weeks ( I'm allergic to anything with codeine) . 

    Are you managing any walks/fresh air/yoga type things ? 

    Have a good day :-) 

  • Thanks very much for your comments.

    Just not sure if I'm ready to go back yet to work.

    I'm ok for a few hours then exhausted.

    I'm a bit low with it all as still in a lot of pain and head is numb.

  • Thanks for all your advice.

    It's been a bit difficult accepting what has happened and coping with the pain and fatigue I have been suffering with.

    I also am putting pressure on myself to return to work when I don't know if I'm up for returning,

    Just very confused.

  • Hi Sunset And welcome.

    First and foremost ring Headway and talk to them.

    Write down your questions and talk them through with the lovely people there.

    Also pester the GP and see if there is a community neuro rehab team in your area and get a referral.

    Meanwhile feel free to let off steam or ask anything and I'm sure if we can help we will.

    Love n hugs


  • Thanks very much

  • I'm speaking again to my gp on Monday so I will ask if there is a team in my area.

    Been very hard accepting what has happened and getting myself in a positive mood.

    I have good and bad days but putting myself under pressure to return to work when not sure if ready or capable 

  • Talk to remploy about your concerns and capabilities. It wasn't until I talked to them that I had even considered a phased returto work and they were great at putting my case to employers. Came in to meetings and paved the way ....they explained things that I ...with brain illness...could not. 


  • I will contact them.

    Thanks for your advice 


  • Can I ask how long it was until you started to feel better and pain eased.


  • Hi, I would follow the advice of all the previous replies, but also don't be afraid to go to your gp for an extended medical note. Seven months ago I called my boss from hospital and asked for three days off. Since leaving hospital I've been in the care of a fantastic community neuro team, who have 'sensitively' suggested an extension of my medial note each time I've told them I'm going back to work. I'm hoping that this current one will be the last one and that the improvements will be such that I get back to work within weeks. That's my plan anyway. Your G.P. should be well aware of the recovery time of something so major, so take time to get well, so that you don't have to go back to work too early and then have a relapse. Good luck. 

  • The original note was for 8 weeks and I've just been signed of for another 3 weeks which is ending soon.

    I am speaking to my gp on Monday.

    The pain increases if I get stressed in any way so I don't want to go back early if I am going to relapse.

    Thanks for your advice.

  • Thanks very much for all your advice.

    I'm finding it a bit difficult to accept what has happened and I'm such an active man but am struggling with fatigue .

  • Hi :) I've sent you a private message 

  • I would still suggest talking about some phased return to work. My CVST in Oct 2014 led me to needing a about 10 days in hospital and then carers coming in at home for several weeks. My employers hoped ( as I did - without knowing the full extent of my illness and capabilities ) that I would be back to work full time in Feb - but no chance. I started with 9 hours/week - and only ended up at 29 hours by the end of December last year . A long slow process - made more difficult with unsupportive employers ( didn't get paid for any hours not worked - only ever had 2 weeks' sick pay) - made more bearable once I was allowed to drive in June 2015 again. Had to get taxis prior to that. My GP was great and supported my need for a phased return. 

    That All said I'm currently not working at all - couldn't bear being at a place that did not appreciate me and all my efforts whilst very poorly - and having a rethink about what I do next :-) 

    Good luck ! 

  • Thanks very much for your advice.

    I will take it slow

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