The Chiari Institute Part 1

On Tuesday I went to the Chiari institute for my initial consult. My friend Carmen came with me as a support which was a great blessing. When we got there we waited about an hour before we finally met with a nurse. This particular nurse is the nurse who is assigned to oversee my case. She had me fill out paper work and went over my history for an hour. When she finished she had us wait in the lobby while she presented my case to the neurologist. Once we got in with the doctor we spent more than 4-5 hours with him and did not finally get out of there till 7pm. That is a total of 7 hours.

The doctor was very thorough in his exam and history taking. In the end I realized what seemed like would be a given, I would have surgery, turned into a much more complicated situation. First off he has confirmed that I have a connective tissue disorder called Ehlors Danlos syndrome. This condition makes having the surgery to fix the Chiari much more complicated. On top of that they believe that I have a condition called tethered cord syndrome which prevent the spinal cord from moving freely. This means that if I have tethered cord I will need a surgery to fix it. This means a few days in the hospital and a short recovery. However, that still leaves the debate of whether surgery for my Chiari is the best option. Currently I am having more tests and then will meet up with the doctor again in 2 months to reevaluate and hopefully come to some sort of conclusion.

The appointment was encouraging because I finally found someone who knows what they are doing and understands what I am dealing with. Most days are a challenge now to just get through. I am still working but often can't do anything more than that. However, the discouraging aspect is that I may have to come to a point where I must accept that things wont improve. I am trying not to think about that part just yet. I am trying to focus on the hope that there is a treatment and that maybe I can be treated and move on.

Recently I returned to a Psalm that has often given me hope out of the Bible.
Psalm 121:

I lift up my eyes to the hills—
where does my help come from?
My help comes from the LORD,
the Maker of heaven and earth.
He will not let your foot slip
he who watches over you will not slumber;
indeed, he who watches over Israel
will neither slumber nor sleep.
The LORD watches over you
the LORD is your shade at your right hand;
the sun will not harm you by day,
nor the moon by night.
The LORD will keep you from all harm
he will watch over your life;
the LORD will watch over your coming and going
both now and forevermore.