Neurosurgery and recovery

[dalrympy]

I'm not sure if this is the right place to post as (all things going to plan) the type of tumour DD has should not be life limiting.

She noticed a large lump on her skull around 3-4 weeks ago and we went to the GP. He sent us straight to x Ray and the local paediatric hospital called us in straight away for MRI, bloods etc.

She was referred down to the main centre and they have said they believe the lump to be a bony Langerhans Cell Histiocytosis (LCH) tumour.

It's classified as a form of cancer but not one which behaves in the classic way.

The plan is to remove the whole thing and fit a titanium plate in place of the missing skull. It's likely to be about 5-7cm piece of skull that gets taken out.

At the moment they do seem to think that it's a single tumour which means she shouldn't need any further aggressive treatment but we won't know until it's out and being analysed.

I'm mostly interested in knowing if anyone has been through this and what to expect. They won't be going in to the brain as such so it's been hard to find much info on the type of operation she is having.

It's been a whirlwind and we are slightly in shock.

I can't help with the type of surgery your having but my daughter recently had surgery under the neurosurgical team at our local hospital. I found a facebook group under the hospital and ward name for other parents that had been on the ward. It might help put you in contact with other people going through the same type of thing and see their experiences. Good luck with the surgery, the medical team at my hospital were nothing short of amazing.

Thank you, I did try Facebook groups but I didn't see anything relevant for the ward she is going on unfortunately

I had neurosurgery 3 months ago, the first week will be tough depending of the location of the tumour, there will probably be nausea, headaches, extreme fatigue and some pain. I had a fat graft to fill in the missing bit of skull so can’t comment on the experience of having a plate.

I would recommended a v shaped pillow for after surgery, a straw to drink and maybe eye patches to sleep on the ward as the ward is so bright.
I hope your daughter is ok and best of luck for the surgery. X x

One of the things a friend who has recently has a brain tumour removed told me is that when she came round from the operation with a plate in her skull, the thing that bothered her the most is that she could hear it moving (a creaking noise) for the first few days. It might be that you need to reassure that the noise goes away.