Neuro surgery on a 3yr old?

[CoffeeDog]

Hi all

I hope you dont mind me posting here - i just didnt know where else to go?

My sons neuro surgeon has just called me with results of his tests, he has a malformation in his brain (his brain itself is normal - its just a few strutures are not).
He has said that surgery would be an option for him we knew he might need this but being told is a different thing. The neuro chap is fantastic and has said he will call back tomorrow evening when hubby is here so he can go through any questions we have - he did say both he and his collegue would go ahead with the surgery if it was their child.

i just dont know what to ask?? - He said the surgery itself is like removing a tumor except there is no tumor... and adults complain of headaches for a while afterwards. He is just soo little.

I cant really talk to family as my nephew has cerabal palsey and epilepsey and anything i say/worry about i just get told at least he is not like xxx :(

Big hugs Coffee. It is hard isn't it. We have decisions coming up re DS soon and I know I don't want to make them.

DS has had multiple neurosurgical operations, they were all done before he was one; and in his case to not do anything would have proved fatal so the decision to go ahead was an easier one for us.

Questions to ask?

Well one would be what will happen if you don't go ahead, will your son get worse? Presumably there are symptoms already.

In terms of recovery for your son - is his recovery and any rehabilitation likely to be easier for your ds if you do it now. Some operations are easier to recover from in early childhood

The obvious ones about how long he will be in hospital, what the recovery period will be like - what support your ds will need and who will provide it.

How often has the surgeon done this operation, what is his success rate.

And the one no one wants to ask - is anything likely to go wrong and what might be the outcome of that.

Oh and have you done a google to see if there are any support groups where you could talk to other people who have been through the same procedure, or is there anyone your surgeon could get to talk to you?

thanks starfish... i have had a look on google but there dosn't seem to be any children having this op it only seems to be adults - and they are not shy about saying how they felt afterwards.... and most of them seem to be american
i wil try to have another look, but find it hard to read through when it seems only people who have had problems post about them - i did have a lovley lady from iow send me a message she had the same op my son will have, but she was 47 ;)

Hi CoffeeDog

Sorry you're going through this - you must be very worried. My 8 yr old ds had a brain tumour removed a couple of months ago, so if I can answer any questions from that point of view then please ask.

I agree with the questions starfish suggested - I hardly asked anything as I was in a state of shock about the whole thing - We had only found out he had the tumour 4 days before surgery.

Try to stay calm - don't forget that brain surgery is all in a days work for these guys. The neurosurgeons we met were amazing and I had the utmost respect for them.

Other questions to ask might include:

1. What experience does the surgical team you are speaking to have of the procedure? How many have they carried out. What were the outcomes?
2. Are there any national and regional centres of expertise associated with this surgery? (For cranio-facial surgery there are 4, for example).

When we were told ds2 might need surgery I think I rather miffed our neurosurgeon by checking his credentials and exploring the options very thoroughly. But hey ho, it may be all in a day's work for him but it was very new and frightening for us. ~You may find that questions pop up for weeks - ask if you can ring or email them through. The more I found out, the more reassured I felt.

One thing I have just picked up on, coffee is you mention the possibility oif headaches afterwards - in our experience Childrens wards are excellent about making sure the child has enough pain relief post operatively and for you to continue with at home.

thanks guys for all the replies - we have decided to go ahead with the surgery and will be chatting with his neuro surgeon tonight - I have only met him a couple of times but i trust him and him fills me with confidence (he reminds me of mayer in holby city ;)
We know he will get worse if we leave it... i guess i willl have to buy him all his beloved numberjack toys for hospital now ;) - most things can be made better by hugging his number 3 toy....

A little tip - make sure you have pjs and shirts that don't go over his head - it will probably be sore for a while. We also took a blanket and ds's pillow from home - the familiar things can make all the difference!

Good luck for the surgery.

Good luck with the surgery. My ds has had neurosurgery twice before he was 1. Professionals were amazing. It is really scary but recovery can be really swift. Not the same op but we were home in 3 days. All the best and if you come across Connor Mallucci I recommend him highly.