Cyst on the brain: Towards the latter stages of my... - Headway

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Cyst on the brain

Mads1975 profile image
8 Replies

Towards the latter stages of my 4 months in hospital with TB meningitis my consultant dropped into the conversation that a brain cyst had been found from one of my many MRI/CT scans.

My immediate thought was how long I would have to live but she told me that it wasn't a problem. 4 years later I start developing a considerable twitch in my left leg whenever I get out of bed. When I mentioned this, she arranged for another MRI scan. This time the cyst had grown from the size of a new 5 pence coin to the size of the old 5 pence coin. I've seen a neurologist about it and he I very lassez faire about it.

Am I worrying about nothing or has anyone else any experience of this?

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Mads1975 profile image
Mads1975
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8 Replies
Matt2584 profile image
Matt2584

Hi Mad,

In 1996 I was diagnosed with one brain tumour located on my brain stem. Because of the location I have - shunt and had to undergo a lot of other operations. The tumour itself was/is benign, non cancerous but can spread or so I have read.

By 1998 I was diagnosed with a cyst right next to the tumour. I had radiotherapy on this. The therapy did not completely remove it and had to have further ops again.

From 96-2000 I have been in and out of school and hospital.

I had an op in 2000 which I assumed would be the finisher. I was free up until 2005 when I had a backk operation, I had a cyst on my spine, which I like to think was brought on because of my original tumour.

Anyway, during the op, surgeons somehow dislodged my shunt tube! I don't know how they did it. They must have twisted my body up like some diseased pretzel or they purposely pulled it out of place. My bet is on the latter.

So I have had complications with my shunt over the years. 2006/08 and two in 2010. I have not had any more ops since 2010 and hope that is the end too.

Take care,

MJ

Mads1975 profile image
Mads1975 in reply to Matt2584

Thanks for your reply Matt, your problems give my cyst some perspective. Im told my benign cyst is no danger so I will thank my lucky stars and wish you well buddy 👊

Matt2584 profile image
Matt2584 in reply to Mads1975

Thanks :) and I hope what you were told is right and that you have no further problems.

With me, a cyst appeared possibly due to the tumour, I was not told that it was because of the tumour but that is my guess after what I have read.

What I was told was the cyst was equivalent to a tumour.

Did you have a tumour and a cyst appear afterwards or did you just have a cyst and that was all?

MJ

Mads1975 profile image
Mads1975 in reply to Matt2584

I just had the cyst as far as I know although the meningitis wreaked havoc through the frontal lobe.

I was due to have a biopsy from the frontal lobe which would have left me with even more verbal disinhibition so count my lucky stars that it was postponed then cancelled when a serious road accident came in. Although cancelled due to upsetting circumstances.

At the end of the day, I'm alive and I am thankful for small mercies :)

Matt2584 profile image
Matt2584 in reply to Mads1975

You had meningitis as well as a cyst, sorry to hear of it. And on top of that you also had a serious road accident.

Sounds similar to me, with the road accident I mean. I had a road accident too but it probably would not be classed as a serious one though.

So, five years of high school for me and six operations, then a road accident and then 5 more ops, can it get any worse?

Anyway, I like to think it won't :).

Mads1975 profile image
Mads1975 in reply to Matt2584

No road accident for me, would have taken the .....biscuit

Matt2584 profile image
Matt2584 in reply to Mads1975

You didn't have a road accident? But I thought you said in your previous comment you did have one, unless I read that wrong?

Are you taking the biscuit? Kidding :)

Mrsfibro2015 profile image
Mrsfibro2015

I too have a brain cyst, I just fount out this month and have been really worried about it. You need to find out which nerves it touches (the brain nerves are mapped using Roman numerals) and what each of these correspond to, only then will you know what to look out for. For example iix relates to hearing and balance, I hope this helps.

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