Sunday, February 16, 2014

Chiari has stolen his smile

 A year ago we got some devastating news!
After an MRI, we were told our 13 year old son has a brain malformation called
"CHIARI".


He has always suffered from migraines and was not coordinated.
But he seemed to be getting worse.
I called our wonderful pediatrician and asked if she would order an MRI.
That evening during dinner she called with the results.
Needless to say I lost my appetite.

We have seen a couple neurosurgeons and follow up MRI's.
Basically is his brain is too big for his skull.
Our brain has tonsils in the back of the skull at the base of the neck.
I will try to explain this the best I understand it.  Forgive me if 
I get it a little wrong.
His tonsils have elongated into the neck and the cerebral spinal fluid 
is restricted to flow at full capacity. Which causes the headaches and coordination.
His measures 17mm.  Which puts a lot of pressure on his spine.
We were told we needed to look at his quality of life to decide wether we should
move forward with surgery.  He will be having surgery Feb 24th, 2014.

Even from a little kid he was accident prone.  At 6 one night he slept in our bed, praise God he did that night.  We woke up to a horrible sound and thought, "What is Espen doing?".  He was having a Grandmal seizure.  He had 1 then some little ones that weekend. We saw a neurologist did some medicine for 6 months and haven't seen any since.  When he was around 12 we noticed he was having more migraines, more sensitivity to lights and noise.  When we would play a family game of kick ball he would play 1 round and have to lay down from the migraine.  Activity brings on a migraine.  He started telling me his joints hurt and sometimes go numb.  He was light headed when he would stand up. We saw a rhuematologist and endocrinologist and they couldn't pin point anything.

This year he has become less active and a worse feeling of just not feeling well.  He is tired more often than he used to be.  Sometimes he forgets stuff.  He sneezed the other day and got a shooting pain in the back of his neck.  He wants to feel better and he would like to move forward with the surgery.  I really miss his smile.








He has a way of bringing a smile to my face just by smiling at me.

We have done so much praying about this, we desire God's wisdom and peace in this decision.
We are praying that God will lead us to the doctor he wants us to go to.  After talking to other Chiari sufferers and reading blogs and watching videos.  We feel God has lead us to the right Neurosurgeon!
We will be moving ahead with the surgery. I am scared, but Espen is not.  He just wants to feel better.


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