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Hello, my name is Karley and I'm from the north east of England. The day before New Years Eve I found out that I have a growth in my brain which I later found out, through correspondence between the neuro surgeon and my doctor, that I have a left sided intraventricular brain tumour. Has anyone heard of this or also have it? I am struggling to find any information about it and the hospital aren't being very helpful. 

I was told that I would have regular mri scans to see if the tumour grows. If it does then they'll operate, if it doesn't they'll continue with the scans. My next mri is sometime in June but I haven't got a date yet. At the moment I'm trying to put it to the back of my mind but it's incredibly difficult. It may not be related but I also have left sided pulsitive tinnitus, which is like hearing my pulse loudly 24/7 in my left ear. This gives me a constant reminder that there's something going on in my head. 

If i need to have an operation, what should I expect? I have a small child so I need to be prepared. Where will the incision be as I will also need to try and prepare my son? Any information anyone has will be greatly appreciated. Thank you for taking the time to read this, I know I've rambled on for a while x

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    Hello Karley,

    Welcome to our forum. I hope others who have had a similar intraventricular brain tumour will see your post and share their story with you. In bumping your thread, I have ensured it goes back to the top of the forum.

    I have also asked our nurses to comment on your thread which they will do in the next few days. They may have some information on  left sided intraventricular brain tumours as well as some helpful suggestions for you. If you wanted to give them a ring, you can also reach them on this free number 0808 800 4040, Monday to Friday 9am to 5pm.

    I hope this helps a little! 

    Best wishes,

    Lucie, Cancer Chat Moderator

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    Hello Karley,

    Thanks for posting a question. I am  sorry to learn about your situation. This must be difficult for you.

    You may know that the ventricles are the hollow areas in the brain which are filled with a clear liquid called cerebrospinal fluid. This cushions and protects the brain.  There is not a straightforward answer to your question about tumours in this part of the brain or how they are treated. This is because different types can develop in the ventricles. They are named after the type of cell they develop in.

    Mostly these tumours are benign (not cancerous). But they may need to be treated as they can cause pressure symptoms in the brain. The tumour may obstruct the flow of cerebrospinal fluid leading to swelling.

    I might be wrong, but I assume that you have not been given a name for the type of tumour that you have. Sometimes it is not possible to put a name to it until the tumour, or part of it (a biopsy of the tumour) has been looked at under a microscope by a specialist pathologist.

    As there tumours are often slow growing  this is probably why your medical team have opted to monitor you. I can certainly appreciate that this must be stressful for you. And it is hardly surprising that you cannot put it to the back of your mind.

    I  am sorry, but I don’t really know what is likely to happen if you need surgery. As it depends on the type of brain tumour that you have.  Also I cannot claim to have an expert knowledge of brain surgery (neurosurgery). This type of surgery is usually undertaken in specialist  neurosurgical centres. So as cancer nurses we only really got to see patients with malignant (cancerous tumours) who might need more treatment after the surgery, such as radiotherapy.

    You might find it more useful to contact an organisation like The Brain and Spine Foundation /.   They provide information and support for people with brain tumours and they have a nurse lead helpline. They may be in a better position to answer your questions.

    Sorry that I cannot be more specific, but I hope that the Brain and Spine foundation can help. But you are still welcome to get back to us if you have any other questions. If you would like to telephone our free phone number is 0808 800 4040. We are here from Monday to Friday between the hours of 9am to 5pm.

    Kind regards,

    Jean

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