Meningioma- crainiotomy

Diagnosed with a parasella meningioma in October, go in for surgery (craniotomy) next week. Nervous about the after effects such as scar (I have long hair), headaches, tiredness, general recovery time and how soon will I be back to normal with work. Any advise gratefully welcomed.

6 Replies

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  • Hi, this is something only your consultant/ neurologist/ surgeon will be able to even attempt to tell you.

    We are not medically qualified and can only share our experiences with you, hopefully someone who has been through your problems will reply.

    Unfortunately many who have brain injuries, myself included, are left with lifelong and life changing problems, myself included.

    Often until the surgery is done the full effects will not be known, each case is different as you can imagine because everyone’s brain is unique to them. It is not like suffering a broken limb which will heal after immobilisation and rest and time, or even an appendectomy which will heal after surgery.

    The brain is a very delicate organ, any disturbances to it can have far reaching effects and once brain cells die they do not regenerate, new neural pathways can be made with perseverance and lots of rest and time and patience,

    Listen to your medical professionals and your own body, rest when needed and hopefully you will be able to return to work soon.

    Janet xx

  • Hi Max. Janet has covered the main points. It really is a 'wait and see' period after any brain surgery so far as after-effects are concerned. Your hair should re-grow fairly soon after the craniotomy and hopefully its length will cover exposed scalp in the meantime.

    Please come back, when you're feeling up to it, with an update of how you get on. Look forward to hearing from you. All best wishes for the best possible outcome..............

    Cat x

  • Hi Max,

    Sorry to hear you are having to join the Meningioma journey. I've been there with a right side Parasagittal, lying on top of the main vein, it was satsuma sized and was only found as I had bumped my head at work and felt poorly.

    I had mine removed in 2012, it was classed as urgent and they said I wouldn't be here today if I hadn't bumped my head as they though another three weeks and it would have been fatal! Don't ask me how they know these things but that's what I was told!

    If I'm honest, it was the build up to having the op that was so much more scary than the actual op itself! You don't (or at least i didn't) ever really feel pain as such, it was quite surreal. I went in the day before the op and was out three days later. I remember being so excited once the day of the op came that I just wanted to jump on that trolley and get the op and be rid of the tumour! They had everything in place for me coming out of the op, e.g. they said i might need speech therapy, physio, etc etc but I was very lucky and didn't need any of those things. I think it depends on location of tumour more than size. I was on a high when I first had the op and that's what I would advise you.....no matter how ok you feel....don't overdo things as it is so easy to knock yourself back....and you won't think you are overdoing it but you will seriously pay the price for pushing yourself. I had a few headaches and my eyes were a bit weird some days but it does settle...and again it depends on location of tumour. I couldn't believe that I was told i could go home so soon! My scar was from the very top of my head, all the way down the back....very like the "S" shape on a tennis ball...I had my hair shaved but only where the scar was,the rest of my hair kind of covered it. Please don't think about going back to work yet, just wait and see how you feel and take a day at a time, everybody is different and until you have had the op you really won't know how soon you could possibly be back at work....remember it's a big op and your health is your wealth. Always try to remember when you get the scary panicky feeling sweeping over you that these surgeons know what they are doing. Go into hospital confident that your surgeon is the best for the job and it's all in a days work to these guys. They will do their absolute best to make sure you get the best they can give you on the day. Positivity really helps, I swear it does. Yes we worry and yes we get scared but try to keep thinking that it will soon be over and it is not as terrifying as you think. Believe that you can do this and believe that it's best it is done, as without going through it, you wouldn't have a life, so go in with as positive a mind as you can have and be a warrior determined to manage. I agree there are days when emotions run high in the build up and your mood can dip so low but please try your best to know you are getting seen and that it's all in your best interest to get this op done!

    I'll be thinking of you Max and keeping my fingers crossed for you.

    Please let us know how you are, when you can but remember.....rest, rest and more rest!

    Best wishes.

    xx

    x

  • Should also add...before you leave hospital, get the ns nurses phone number, so that you have someone to call if you have any worries. That's what they are there for, so don't be shy to ask. xx

  • Although not the same, I had a torn meninges on the right temporal lobe area. I understand that there is a scar about 8 inches long, but it's never been any trouble. Not being lucky to have long hair (more of a boiled egg style). The little I have is enough to hide it. Time also fades a scar. Dave

  • Had the same almost 3 years ago, I was wondering what to say here but Peaches has put it perfectly. I'm not aware of any scarring only denting, and I swear my hair line is a tad forward as others have said I look younger, (nothing like a craniotomy for holding back the years eh). You have lots of folk here rooting for you Max, and as others have said keep us posted, we are your new family. Fredikins

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