Here is an attempt to explain what we are faced with right now. I am not a neurosurgeon. Most of these words and concepts I have learned in the last month, so i'll do my best to break it down.
I'll start with the most critical, and probably what is the start of all her problems. The top bone of Emma's spine (the odontoid process) is curved and the bone at the bottom of her skull under the frontal lobe is at the wrong angle. These 2 bones are putting pressure on her brain stem (Medulla) YES! her odontoid process is putting pressure on her Medulla Oblongota, i giggle every time i say that sentence!!! and blocking the flow of Cerebrospinal fluid (the fluid that our spine and brain float in). The CSF job is to "cushion" or protect the brain. You also need to understand that the brainstem is as our neurosurgeon put it the most Prime piece of real estate in the body. You can have other sections of the brain removed and have no side effects but damage to just a small part of the brain stem will cause serious and even life threatening problems. THIS IS PROBLEM 1, and the most serious. Problem number 2 is because of problem one it has provided less space at the back of her skull, so as her brain has grown there is not enough room. so the Cerebellum (the wrinkly cauliflower looking part at the back of the brain) has herniated or swollen in to the the spinal column, this is also blocking the flow of CSF. This condition is called CHIARI 1 Malformation. Her third problem (most likely as a result of the first two problems) is that a syrinx has developed in her spinal column, which basically means a cyst or fluid filled area has developed in the middle of her spinal cord. Her syrinx is not extremely large in diameter but it is long. It runs from about her C3 vertebrae down to her T9 vertebrae, basically her neck to the middle of her back. Yes all this stuff has overwhelmed me, but each time I share it or talk with the doctors, and read an article or study on the internet, I start to understand it a little better. Below is Emma's MRI, and below that is one you can compare it to see what it should look more like.
This is Emma's Brain.
Below is some random pic I found on the internet but you can see how her brain stem (medulla) is NOT indented and getting pressure put on it, and the dark section around it is the cranial-spinal fluid (CSF). In Emma's (above) there is very little if any room for CSF to flow. (That's Not good!)
So you may be wondering about Emma now...
I'll start with how we got here. I began to have concerns about a year and a half ago. Emma was running marathons with other kids at her school where they would run a 1/2 - 1 mile after school when they had added up to 26 miles they were able to run the last mile with the L.A. Marathon. I began to notice Emma struggled to run she was last to finish she wasn't tired or in pain and she couldn't really explain why she couldn't run. I also had to pull her out of gymnastics because she had headaches after class. Then last summer while we were in Canada we did a lot of walking and hiking and Emma would have mild headaches, everyday I was giving her motrin. Then as school started this year she was playing tennis and she could run 1 lap around the tennis court, but would sneak off and not run a second lap like all the others, she also mentioned tingly toes in dance, and she occasionally would fall down surprised she had, I just thought she was clumsy. So i mentioned these to her doctor and she refered me to a neurologist. The neurologist noticed Emma's nystagmus (when she look to the right or the left her eyes jiggle), so she ordered a MRI of the brain, then she refered us to a neurosurgeon.
Where we are now:
We have seen a neuro surgeon at Loma Linda Children's hospital, Dr Zouros, Nate was taking finals so my Mom came in town and went with me. We loved this doctor, and got a good feeling about him. We also got a second opinion from Dr Shaffron at Phoenix Childrens hospital in Arizona. Loved him also. Love Phoenix Children's hospital.
Both doctors want us to
~Get a CT Scan so the doctors can get a better view of the bones (this is what we are waiting for insurance to approved and to get scheduled right now!)
~And both doctors agree Emma will have to have surgery.
The scary part:
Besides major surgery!!!
The doctors give us 3 possible options, so the Neuro surgeons with 18 years of experience want us to decide which procedure would be best. There is a lot of controversy on how to treat Chiari among doctors and Emma's is not a standard Chiari. The statistics for Chiari surgery are 80% stay the same or get better. 20% get worse and require more surgeries. I will talk more about the surgeries when we know more.
We are scared for what Emma will have to go though in 2011. It's hard for any parent to have to watch their child in pain. But Nate and I are optimistic that all will go well for Emma. We know that our faith joined with our family and friends united in one heart and one mind, praying for her health and improvement will bring success in Emma's surgeries. We are so grateful for Emma in our lives and the sweet kind spirit she brings in our home. She is so helpful, she gets Levi out of bed on Sat. morning, changes his diaper, puts him in his high chair and gets him a bowl of cheerios, so we can sleep in. What more could parents ask from a daughter. We see a bright future for her. We love her very much.
