Chiari 1 Malformation

For the past week Lexus has been experiencing really bad headaches that are affecting the back of her head. She said on top of the pain, it feels really cold, so cold it feels hot. With each headache, her stomach starts to feel queasy and about half the time her legs start shaking. She has only gotten sick once. The headaches occur 2-3 times a day and wakes her up every night about 2 times. She has been very extremely emotional the last couple days too.

 

We took her to the doctor yesterday. They checked the usual stuff, but really focused on her eyes and balance. The doctor pulled me out into the hallway and said that they never like when anyone has pain in this region of the head or when head pain wakes a person up at night. She told me she was going to schedule an MRI at Children's ASAP. Last night, Lexus had an MRI at Children's at 9:00 p.m. The experience was painless; in fact she got to watch a movie during the procedure…Beverly Hills Chihuahua. This was far better than the loud noise my m-i-l and I got to listen to. They sent us home with no new info. I treated her to Greater's ice cream on the way home. Kimberly and Austin spent the night at my parents, so Lexus and I slept in my bed to comfort her.

 

She slept pretty good last night, but woke up with another headache. She was pretty clingy until she left for Art Camp. The doctor called at 9:00 a.m. to let us know her results…they found a small mass at the base of her head and we did the right thing by rushing her for an MRI. She has Chiari (key-are-ee) 1 Malformation. In layman's terms this means she has extra tissue at the base of her brain that is creating a minor blockage that is stemming the flow of fluid that moves from her brain down to her spinal cord. This is what is causing her headaches. It is something she was born with and most people never even know they have. She is Type 1 which is manageable. She will be seeing a Neurosurgeon to discuss options for treatment. Two options her doctor mentioned are letting her grow through it or having surgery to better open up the area and improve the flow of fluid. Of course, we don't know for sure what will happen until after we meet with the Neurosurgeon. We will schedule her appointment next week when they call us. Right now she can do everything she did before and she is allowed to take Ibuprofen (kids' Motrin) for her headaches. She has experienced some slight depression with this and is asking to see lots of people. She is feeling lonely and bored We are doing our best to keep her extremely active and fulfill her requests to see people as much as we can.

 

We have not told her yet. Randy and I are going to sit her down tomorrow and explain everything to her. The doctors have been wonderful up until this point telling her everything that is happening and why. Randy and I want to continue this and make sure she is fully informed about this. The doctor directed us to a website to read up on Chiari 1 Malformation. If you are interested in reading more about her diagnose: http://www.ninds.nih.gov/disorders/chiari/chiari.htm the website is the National Institute of Neurological Disorders and Stroke and the link takes you directly to the information page about Chiari 1 Malformation.

 

Please keep her in your prayers!!! We know God will get us through this and it will all work out! Thank You for all the love and support we have already received, it is deeply appreciated!