dd (4.6) - brain surgery..experience? support group??

[maturestudent]

My DD will soon undergo brain surgery to remove a tumour. Does anyone have any experience of similar, or know of a friendly support group that can help reassure a very scared mum?
Her tumour isnt cancerous (99% sure) so dont feel like I can post on the many cancer groups where people have undergone brain surgery.
Anyone??
xx

Hi,

A good friend of mine has experience of this and I will mail her and get some details for you. I'm so sorry that you are hvaing to go through this.

Patsy

Thanks Patsy,
That would be great,
X

No problem. My own DD2 has had serious health problems and being in touch with parents who have experience of her rare condition has kept me sane.

I will get back to you as soon as Susie replies to my message.

Hi,

Sorry, she didn't find any relevant groups either. She is going to have a think and come back to me if she comes up with anything useful.

I had a search under CAF (Contact a Family ) and if you go to this page www.cafamily.org.uk/Direct/b24.html there are links to some brain tumour support groups.

I hope that someone else on MN can help you more.

Patsy x

sorry to see your DD has a brain tumour, what sort of tumour does she have?
how old is she?
i know a bit about brain tumours and might be able to help

Is it a meningioma by any chance? I only ask because I know they are usually benign. If it is I have links to some meningioma support groups.

brain tumour uk Hope this is helpful.

there was someone on here with a son with a brain tumour - haven't seen them around for a while though - I think they were called droile.

Your could try seraching for her and maybe catting her.

Will look at links, many thanks.
They think her tumour is a dermoid, which itself is benign and harmless.There are a few questions over diagnosis though, but they just want to remove it. The problem is where it is. Is sits close to where her fontanelle is/was, but it has grown and has eroded her skull, so actually protrudes through the skull. It has also squashed the main vein surrounding the brain, and they think it is stuck to the brain lining.
We have an appointment with the neurosurgeo on Fri, following another mri a couple of weeks ago.
It is the actual surgery that scares me. Once the lump is gone, providing they get it all, she should have no further problems.
She is so calm about it, which is fab, but we are bricking it,
xx

ooh great, thanks fio
x

no experience but wishing you and dd all the very best

My husband had a meningioma removed 3.5 yrs ago. It sounds kind of similar in that the tumour itself was benign but it was pressing on his brain and optic nerves so had to be removed. The surgery and recovery period was f*cking scary but he is now fully, 100% recovered and back to his normal self.

It was bad enough with dh, can't imagine how awful it must be to watch your lo go through this. I'm sure your dd will be fine, it's amazing how quickly people can recover from brain surgery.

Good luck, keep us updated and let us know how you and she get on.

just wishing your dd makes a rapid recovery and is soon back playing with her friends