Chiari Online Support Group

My son is about to have Surgery


#1

My son is having Chiari Malformation surgery in 11 days. I was told not to google Chiari Malformation because it would scare me. Any advice for a mother? How long will he be in pain? I have a million questions


#2

Hey MandyMichelle,
This is not an easy time for anybody involved, especially you and your son. Your ‘million questions’ are normal and your son’s medical team should run through all of them with you. I am sorry to say it like this, but this is the honest truth, your question of “How long will he be in pain?” is a bit like asking “how long is a piece of string?” there are just so many variables. I say this from a bit of experience, I have endured 6 bouts of neurosurgery and no two surgeries, nor recoveries, have been the same. So, in my opinion, to be saying your son’s recovery will take ‘x’ time is impossible. I have known some people pull through and recover rather quickly (4-5weeks or less even) but by the same accord, some people have ongoing issues. My surgeries (x6) have not been chiari related, my last neurosurgeries (x2) were in 2013 and still today I have days of absolute agony.
I can completely understand why you have been advised not to google chiari as some of the information out there, although relevant to some, may not be relevant for you and to say it can be a little overwhelming would be a HUGE understatement. This can be a very scary time and ‘Dr Google’ WILL only add to that concern. Trying to draw a parallel between one individual’s situation and another’s is fraught with danger as no two are exactly the same, so often it’s best not to go there.
My advice, speak to his dr, speak to his surgeon. They are more likely to have relevant information regarding your son’s specific situation. BUT (and this is a BIG but) they can really only give you estimations in regard to some of you questions. Each individuals surgery and recovery is very individual, it is not a ‘set time’ nor ‘set symptoms’ sort of thing.
“Any advice for a mother?” Through this whole process DO NOT lose sight of ‘You’. Take time for yourself. Look after yourself. If you burn yourself out at the beginning of all of this, you will be of very little use to your son if and when he needs your support. As I said at the beginning ‘This is not an easy time for anybody involved’ and that includes YOU. You MUST look after ‘you’.

And please remember, we are here if you need.

Merl from the Moderator Support Team