Wednesday, July 22, 2009

What Chiari Malformation and Syringomyelia Are

Update on August 4, 2010
The following post was originally written in July of 2009 when I was first diagnosed with CM and SM. I had surgery on 8/14/09 and I continue to have symptoms even though MRIs in April 2010 show that the decompression surgery was and still is a success. My symptoms vary and thankfully do not often hit all at once. I have pain in my head that is not like regular headaches, and it can be just a an achy feeling or quite nasty. Other symptoms include a feeling of pressure in my ears and face, double vision, neck pain, and weakness in my arms and legs. It is believed that the syrinx (cyst) in my spinal cord may have caused irreversible damage, but I remain hopeful that in time, the syrinx will get smaller and perhaps disappear. No matter what happens, I continue to trust my Lord and Savior to keep me in His presence, and it is my heartfelt desire to grow ever closer to Him.


Lord, You have assigned me my
portion and my cup;
You have made my lot secure.
The boundry lines have fallen for me
in pleasant places;
surely I have a delightful inheritance.
Psalm 16:5-6


July 22, 2009
From Dr. John Oro's book, The Chiari Book: Chiari (pronounced kee are ee) Malformation is an uncommon, congenital, neuroskeletal deformity of the lower compartment of the cranium called the posterior fossa that results in the crowding of the brainstem and the cerebellum. The lower part of the cerebellum, known as the cellebellar tonsils, protrudes down the base of the skull and into the spinal canal. This results in tissue compression and decreased spinal fluid flow.


Although I was probably born with this, it often does not present symptoms until people are in their 20s and 30s. This actually fits for me, because my first symtoms that I can recall began as far back as my late 30s. The symptoms I had resulted in being diagnosed with fibromyalgia, but this winter and spring I began to notice new symptoms, with the most concerning being numbness and pain in my face, increased pain and weakness in my legs, and shortness of breath. After seeing a doctor this spring, I was sent to a neurologist, who ordered MRIs of my head and neck. It was then that Chiari Malformation was discovered. What also showed up was Syringomyelia, which is a syrinx, or cyst, that has formed in my spinal cord. This syrinx is defined as "an abnormal fluid cavity (something like a long blister) inside the spinal cord." In Dr. Oro's book, he goes on to say that spinal fluid should be in the spinal canal and outside the spinal cord, not inside the spinal cord. The syrinx has formed because the natural flow of spinal fluid is partially blocked by the chiari. The syrinx causes pressure and the disruption of the normal function of the nerves that travel in that area of the cord. The syrinx I have starts at C1 in my neck and goes down to T9 in the thoracic in my back, so it is a long one.


It is because I have the syrinx that I need to have surgery, because it is causing quite a few neurological problems for me, and it is best to have the surgery before these symptoms get worse and may become irreversible. The surgery is called posterior fossa decompression, and I will explain that in another post. The surgery is scheduled for August 14, and I will probably be in the hospital for 2-4 days.


I would love your prayers in these days leading up to surgery and for the surgery itself. My prayer requests presently are that I do not fall into doubts or fears, and that nothing gets in the way of surgery unless it is God-given.


(A good resource on CM and SM is this website: http://www.conquerchiari.org/)


Tuesday, July 21, 2009

Two approaches to life

This morning I was reading a message by David Jeremiah, and this was a simple yet profound statement he made: "There are two approaches to life. We can focus on Jesus and acknowledge the storm, or we can focus on the storm and acknowledge Jesus. By keeping our eyes on the Lord, we can live above the circumstances and have an attitude of joy..." As the weeks go by and surgery approaches, I know it would be easy to sink into fear and focus on the storm. I am grateful for family and friends who will help me to focus on Jesus instead, and this storm will pass, as all storms do. Sometimes they leave after effects that need to be overcome, but through Christ healing does come. I ask today that you pray that the appointments I need ahead of surgery will all fall into place, and that nothing will get in the way of the surgery date.

Monday, July 20, 2009

You can get your mom to blog!

I am going to start this blog, despite the fact that I said I would never blog, because I thought I might want to express my feelings about the Big Brain Squeeze surgery coming on Aug. 14. I am looking forward to it (surgery) even though there is the promise of a funky new hairdo that I am pretty sure I am going to hate, but my thanks to Sara and Maya, who helped me pick out a rather cute headscarf to cover the sutures, the scar to follow, and the sure-to-happen bad hair days. I'm not sure how much I will have to say, but I thought it would be easier to say in this 1 place rather than several places.

But I am not going to just write about the surgery - whew! - I heard that collective sigh of relief! As you may be able to tell by the name "Nana's House", there will be countless entries about our 3 adorable grands, occassional tidbits about their "rents", and sporadic tales about Lauren, me and our dog, Lucy. For now, let's see where this thing goes in the days ahead. One thing I know, God is always with me, as He is with you, too.