Lexi's Road To Recovery
This is Alexis she is 11 years old and is going to have her 3rd brain surgery in less than 2 years. Alexis was diagnosed with Chiari Malformation 1.5 when she was just turning 9 years old and it has been life changing ever since. Alexis had these horrible headaches and dizziness to start and then everything else started to get worse, numbness, tingling, neck and back pain, trouble swallowing, hot body temps, fatigue, stomach problems, brain fog, intense pressure in her head, fast heart rate, high blood pressure. Amy (Lexi’s mom) was on a mission to find the best Neurosurgeon around and was very lucky to find Dr. Douglas Brockmeyer at Children’s Primary Hospital in Salt Lake City, where he had her in surgery within in 24 hours of meeting him. Alexis then developed hydrocephalus (fluid on the brain) and was life-flighted back to Salt Lake and she underwent an ETV (endoscopic third ventriculostomy) basically draining the fluid off her brain. Alexis has been doing okay since but recently has been having headaches, neck aches, heart and lung issues, and just not feeling well in general. Alexis went back to Salt Lake for a checkup and it has been determined that she has cranial instability and her skull is collapsing forward on to her brainstem even more causing all sorts of autonomic dysfunctions and affecting her swallowing (Dysphagia). Alexis is scheduled to have a cervical fusion on May 15th, this is going to give her cranial stability and hold her head on straight and take away some pressure from the brainstem. Amy and Alexis will be in Salt Lake for 10 to 14 days and then Alexis will be home for several weeks recovering. Amy is self-employed as a Massage Therapist in Billings so this takes a huge toll on her income.
What is Chiari Malformation? Chiari Malformation Type I (CM) is a neurological disorder where part of the brain, the cerebellum (or more specifically the cerebellar tonsils), descends out of the skull into the spinal area. This results in compression of parts of the brain and spinal cord, and disrupts the normal flow of cerebrospinal fluid (a clear fluid which bathes the brain and spinal cord). Because Chiari involves the nervous system, symptoms can be numerous and varied. In fact, one large study showed that the vast majority of Chiari patients reported 5 or more symptoms, and 49 distinct symptoms were reported by 2 or more patients. Despite this variety, the most common Chiari symptom, and the hallmark of the disease, is a headache. Usually, the Chiari headache is described as an intense pressure in the back of the head. Other common symptoms include balance problems and fullness in the ears. In very young children, trouble swallowing is one of the most frequent symptoms. When thinking about symptoms, it is also important to keep in mind that once a person's health is compromised in one way (with Chiari for example), secondary problems are more likely to develop, especially if a person is in chronic pain.
We would like to thank everyone for their prayers and support as they are needed more than ever through this hard time. We are creating this in hopes to ease some of their financial burdens so Amy and the family can better focus on Lexis recovery!
