Tag Archives: chiari 1 malformation

Update – Andres (Chiari 1 Malformation)

Well, here we are not even three months out from Andres’ Chiari 1 malformation decompression surgery.

“How are his headaches?” you ask.

“Andres, how are your headaches?”

“What headaches?”

Gone.  Completely gone.

The neurosurgeon shook his head and reminded us the week before surgery that because Andres didn’t have the typical Chiari back-of-the-head headaches, there was only a 30% chance they would go away after surgery.

Gone.  Completely gone.

Andres is running, jumping, playing, riding his bike, getting out of breath, and not needing to come inside and lie down.  The little boy with the grimmace is gone.

It’s amazing what a few months (and a great surgeon) can do.

Andres’ Update – Chiari 1 Malformation

July will be a busy month with lots of evaluations set up for Andres.  Our insurance company is not wanting to cover a neuro-psych evaluation which the neurosurgeon and physical therapist are recommending.  We’ll see what happens with that.  I suspect it will be eventually approved and that this is par for the course.

Tomorrow Andres will be evaluated by our physical therapist who has had experience specifically with Chiari kids; she did a lot of Chiari-related research and treatment in grad school and will know what to look for.  I haven’t noticed any physical deficits with Andres, but I do know he was late to meet some of his gross motor milestones in the areas often affected by Chiari.  Of course, I didn’t know about the Chiari back then, it’s only in hindsight I see the connection.  We tend to stop watching for motor milestones after our children reach the bike-riding stage, so I’ll be interested to see what turns up on the evaluation.

The Lord has been so gracious to provide this specific physical therapist for us.  It has been such a comforting reminder of His promises to Andres:

Jeremiah 29:  11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. 12 Then you will call on me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart.

I do not know why God singled out Andres for this condition.  I do know that God knew about this long before I did, and that He has a plan and He is intimately involved in coordinating all the details.  And I know that in light of eternity, all of God’s plans are good.

I find it difficult to fathom that we are going to turn Andres over to a person whom we know very little who is going to render him unconscious and cut into the back of his skull with the intent to reshape it.  We have only recently been willing to let him go out of our sight for things like Awanas and Sunday school.  The idea that all this will be happening to him and it is completely out of our control is very disorienting to me.  Unfathomable, really.

We continue to ask for prayers for Andres’ healing and the complete resolution of his symptoms.

Blessings,

Alyson

Andres – Chiari 1 Malformation Update

So I guess I should start changing these to Chiari 1 malformation, syrinx update.

Tomorrow is the big appointment with the neurologist at Dell Children’s Hospital in Austin.  I’m so afraid this one will talk me into thinking everything is a-ok with Andres without doing any more testing.  It’s hard when what you want to hear is that no more testing is needed, yet something in you tells you it’s not true.  I want some cold hard facts, imaging, nerve conduction studies, something that will prove Andres is not having any neurological damage due to his condition.   I just don’t think we ought to base an 8-year-old’s medical treatment off of what he says his symptoms are, even if the neurologic exam is negative.  The cold hard facts are he has blurry vision, daily headaches, and occasional numbness and tingling in his hands.  It sounds pretty suspicious to me.

So, we’ll see where we go from here.  The pediatric neurosurgeon here has got a great reputation and has had experience with Chiari, but it’s really difficult to get a referral is what I hear.   The last thing I want is for Andres to have to have brain and spinal cord surgery, but to do nothing if that is what he truly needs would be worse.

I’m praying I will stand my ground and the neurologist will see everything he needs to to accurately assess Andres’ situation, and I’m praying for aggressive testing so that of everything we can be sure.