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Arachnoid cyst - help so worried

(10 Posts)
Notthinkingclearly Wed 13-Jan-16 16:02:33

Ds who is 9 has had a lump on the top if skull since he was 3. GP has dismissed a couple if times as just shape of skull. Mentioned it to paediatrician at a visit regarding something else and she decided to scan doing mri. Just had a call to say its a arachnoid cyst which is pushing up his skull. Brain looks ok. Will referred to neurosurgeon team. So worried has anyone had any experience please?

Notthinkingclearly Thu 14-Jan-16 19:06:01

Anyone?

ktmummy1 Thu 14-Jan-16 19:29:18

No experience at all but just wanted to say I am sorry you feel so worried but totally understand. If they decide to drain the cyst the Internet information seems to suggest this can resolve the issue. It's only if it's growing and pressing on the brain that symptoms arise. How is your son in himself?

Notthinkingclearly Thu 14-Jan-16 21:23:43

Thanks for your reply Kt. He seems well in himself but does complain of feeling nauseous from time to time but maybe over analysing. Been trying not to read google too much so that is helpful that draining can resolve the issue. It's just been a bit of a shock,

BlackSwan Fri 15-Jan-16 12:36:36

Hi there notthinking... I understand what you're going through. When our son was 3 he was diagnosed with a brain tumour. Not exactly the same thing of course, but I know how it hits you. If drainage or something similar would deal with it, and of course, that's no small thing for a parent or child to go through - that would be a good outcome though? We had surgery and then radiation, it sounds like this isn't the kind of thing you would have radiation or chemo etc for? If so, that would be a very big positive in my view. But this is a massive blow I'm sure. It may take a long time to sink in.

Oldmum55 Fri 15-Jan-16 16:11:21

Hi Notthinking, I understand that this sort of cyst is quite common and usually found by chance when doing imaging for unrelated issues. Apparently many people have them and never know about it. It seems that if they do not cause any symptoms, then nothing needs to be done, if they do, then drainage, nowadays done by keyhole surgery, is possibly recommended. Hope this helps to put your mind at rest before you get to see the neurosurgeon.

Notthinkingclearly Sun 17-Jan-16 19:08:39

Thanks for replies. Black swan that must have been a terrible time for you. Hope your son is ok now. Thanks old mum too for useful info. What worries me is that his skull has been pushed up and therefore thinned. Will this mean his skull will be more fragile? I feel terrible that he has had this for 5 + years and I didn't push for scan before now. It's been a nagging doubt in my head but 2 GPs have thought the same that he had a bumpy skull where bones had fused. He's had lots of different things investigated over last few years including kidney reflux, heart murmurs allergies that I have been so worried about these things I have let him down over this.

Oldmum55 Sun 17-Jan-16 19:35:07

Notthinking, please don't blame yourself. You have done all that a caring mum could do, you had your son seen by two GPs and had to believe their diagnosis. If you had pushed further you would have ended up being labelled as hypochondriac. I know how upsetting it is when kids have various problems/symptoms. Hope everything will be sorted soon.

ktmummy1 Sun 17-Jan-16 20:15:15

Part of being a great mother is the guilt we feel when anything happens to our children. This is not your fault. Its easy to have that "if only I'd done this or that" attitude, but you had no reason to as you were reassured by two GPs and no symptoms alerted you to a problem. I'm sure the neurosurgeon will provide you with more reassurance. It's tge waiting game that's so hard. X

Notthinkingclearly Sun 17-Jan-16 21:17:23

Thank you i think you are right I always think its my fault.i have read that these cyst often develop in the womb so even feel gulity it was something i did or didn't do in pregnancy ...

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