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/)
