Wednesday, February 24, 2016

Chiari Malformation 2 Years After Surgery

2 years after Decompression surgery

2 years later....

Espen swam with a dolphin this past summer

It has been 2 years February 24, 2016 since his Decompression surgery.
I thought it would be nice if I would share with you how he is doing.

First I would like to say that this is our story and that every person heals different.
When Espen was first Diagnosed I scoured the Web looking for other peoples stories.
I wanted to know everything I could.  

The things I wanted to know were....
Surgery - yes or no?
If yes, then who?
What is recovery like?
How are people living with this condition if they had surgery or not?
Can you work?
If so what kind of work?
How active can you be without getting the headaches?
Those are just a few of my questions.

I wanted to share our experiences in hopes that it might be helpful for others.  

I asked Espen yesterday, "are you glad you had the surgery?"
His reply is, "YES"!

 For the most part he seems like a normal 16 year old.
He works as a lifeguard and goes to school and plays on the computer.
He has found that highly active activity brings on headaches.  Due to that he enjoys activities like
swimming, scuba diving, playing board games, and playing mine craft. 
 He dreams of being a falconer and volunteers at a rescue twice a week.
Volunteering has been wonderful for him.

Before Espen was diagnosed with Chiari, he was a certified Scuba Diver.  
This summer he wanted to visit his brother in the Keys and go diving.
His brother is a certified Scuba Diver Instructor with many other Certifications.
I tried to find research on wether you can dive with Chiari or not, I was not able to find any info.
So I decided to trust Espen to know his body and know his limits.  As a mom it is hard to find that balance.  Everything in me wants to keep him safe, which can come across as controlling.  
So he went to Florida and had an amazing time. 
They got to do guy stuff, brother stuff and some fun stuff.
They went diving a couple times.  He even did a night dive.
The next day he visited a dolphin place and swam with a dolphin.

Espen still gets headaches but nothing like before.  Sometimes he knows that certain
situations will bring on a headache but other times there is no rhyme or reason.
It is hard knowing is the headache from Chiari or not.
Just a few things we have found that bring on a headache are:
being in front a computer for hours, long road trips, focusing on school work for to long and he can't do strenuous stuff on our farm.  So he rides the riding mower.  

An odd thing he has experienced is, his appetite.  Every since the surgery he has no appetite.
He struggles to find something he wants to eat, nothing sounds good to him.  I have to encourage
him to eat otherwise that can bring on problems too.

Another odd thing he experienced was after surgery riding in a car brought on nausea.  For about 3 months.  Oddly though was riding in a convertible didn't.  He said that having a roof over his read while moving gave him an uncomfortable feeling.

We still see a special NeuroOphthalmologist to keep an eye on the pressure in the eyes.
The last visit everything was fine and she feels he is good.  It was discovered that he needs a low prescription set of glasses though.

We also go back for a yearly check up with the Neuro Surgeon.

We feel extremely blessed.  It is nice to see him feel good and participate in activities.

If you are interested in knowing a little more details about the surgery and see photos we created a Facebook page called Espens Chiari Journey.

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