Hooray!
Yippee!
Woo-Hoo!
Good News!!!
No surgery!!! Lexus' appt. with the neurosurgeon was today and it gave us reason to celebrate! They were so wonderful explaining everything to us. They gave us a whole folder of information on chiari 1 Malformation. They explained that the cerebellar tonsils in her brain that are at the bottom of the cerebellum were 5mm past the skull plate. Anything 5mm or more is characterized as a Chiari malformation. When the tonsils are being compressed they become pointy at the end as they are pushed into the opening next to the brain stem which decreases the flow. Lexus' cerebellar tonsils are well rounded at the bottom, meaning they are not being compressed (good thing). They showed us the images from her MRI, which showed fluid all the way around the brain stem (another good thing). They checked all of her reflexes, balance, motor skills, coordination, etc… She was great reassuring Lexus that they see many kids her age, younger, older and that her condition is mild. We did find out it can be hereditary. We don't plan to have Kimberly and Austin tested at this point.
Lexus' symptoms have pretty much disappeared in the last week. She has not experienced a headache in over a week. She told us Lexus may never experience another symptom again. We have to document any symptoms for the next 6 mths. And call if they ever worsen. The Dr. did tell us that head trauma (soccer ball to the head) can cause swelling/compression of the cerebellar tonsils, another good reason to keep an eye on this. Lexus will return to Children's in January (6 mths.) for another MRI of her brain/spinal cord and meeting with the neurosurgeon. They want to check her spinal cord to make sure spinal fluid is not getting into the core of her spinal cord. The Dr. said Lexus could continue any physical activities her lil' heart desires, no restrictions! The Dr. told us the emotional distress Lexus' has been experiencing is possibly the result of a concussion (soccer camp) or obviously the anxiety of dealing with this. I can't tell you how wonderful it was to see her smile…beaming ear to ear at the good news! The one major thing we do have to remember is if Lexus ever needs a spinal tap, we must contact the neurosurgeon immediately. They expressed that this wouldn't be good with her diagnosis.
We feel like the world has been lifted off our chests!!! Thanks again for all the love and support…we are so blessed to have such wonderful family and friends!!!
Love,
Randy, Carrie, Lexus, Kimberly & Austin


