Alyssa and Alex Nistler Alyssa Nistler

First post: 1/17/2017 Latest post: 11/17/2017

Alyssa  was born with Arnold Chiari Malformation  however she was not diagnosed until she was 5 years old. (2006) For those of you who are not aware of this awful disease here is a description. Arnold–Chiari malformation consists of a downward displacement of the cerebellar tonsils through the foramen magnum (the opening at the base of the skull), sometimes causing non-communicating hydrocephalus as a result of obstruction of cerebrospinal fluid. The cerebrospinal fluid outflow is caused by phase difference in outflow and influx of blood in the vasculature of the brain. It can cause headaches, difficulty focusing, concentrating, and thinking, as well as difficulty coping (with what most consider and experience as normal, everyday life), fatigue, muscle weakness, difficulty swallowing (sometimes accompanied by gagging), choking and vomiting, dizziness, nausea, tinnitus, impaired coordination, neck pain, unsteady gait (problems with balance), poor hand coordination (fine motor skills), numbness and tingling of the hands and feet, and speech problems such as hoarseness.
 After several years of missed school and most  activity induced play dates and sports due to pain and multiple other symptoms we decided it was time to do the decompression Surgery (2011). Dr. Parks at St. Louis Children's hospital who happens to be one of the best in the nation performed Alyssa's surgery. The surgery was a success and we were overjoyed that she was finally going to be pain free. 
Fast forward not even  a year from her surgery Alyssa started complaining again. This time the headaches were different they were not pressure headaches they were more sharp pain, with it came horrible neck pain. She again started missing school, sports, outings with friends and riding our family horses due to pain. So once again I took her to See several Drs... I think we may have seen a total of 8 different ones and been prescribed several preventive drugs With ZERO relief.  Every Dr would say the same thing, " I am sorry Alyssa you have chronic headaches maybe one day you will grow out of them". My sweet full of personality little girl has become crabby, bitter, angry and mad at the world. Her school has suffered her relationships have suffered, and she refused to go to anymore Dr.s. 
Well you know what they say about Mamma's.... this mamma was not going to have her daughter suffer anymore. I demanded another MRI and even had to argue with the insurance company to include her neck. Well we got the MRI and received her results on January 10th (2017) yes her 16th birthday.  Alyssa finally has  a diagnosis.... Retroflexed Odontoid This is a rare condition. In order to understand it , it is important to know how the spine works. The spine is made up of 33 bones, or vertebrae. These and the discs between them provide a passage for the spinal cord and nerves. The spinal cord itself connects the nerves of the body to the brain. Alyssa's second vertebrae moved upward and It is pressing on the lower brainstem. The brainstem is a stalk-like part of the brain that connects the main portion of the brain to the spinal cord. So basically this condition is like Chiari only the spinal cord is going up into the brain!!!! Ouch That has to hurt right? No wonder Alyssa is in so much pain her head is literally crushing her spine.
We are of course happy to finally have some answers however we know that this is going to be a long road to get my Alyssa fixed and feeling like a normal kid. Our journey starts today we are going to get her fitted for a neck brace. The brace is going to pull her head up and keep it in the correct position and she has to wear this brace for one month. We will see the Neurosurgeon on February 24th to make decisions as to when we will move forward with correcting her brain/ spine. We will have a few appointments in between seeing surgeon because Unfortunately having her brain stem crushed for as long as it has been crushed has caused some other concerns. 
I appreciate all the love and prayers and Alyssa does too. After repeating myself for 2 days I felt this was the easiest way to keep everyone informed. I mainly set this page up for these 2 reasons.
1) to keep friends and family in the loop and informed with Alyssa Journey so that you can lift her up in prayer. I know that GOD is the ultimate healer and that he will guide the Surgeons hands..... I am GODS biggest fan right now and so thankful that he gave me the insight to push and get answers.
2) to spread the word about Arnold Chiari Malformation. Please help me to help others find a cure, get diagnosed and not live in pain anymore. I remember the first time I heard the term Chiari when Alyssa was just 5 years old I could barely find any research on the disease now 11 years later I hear the term quite regularly. 1 in every 1000 babies are born with this disease and those are just the ones they know about. People walk around with Chronic pain there entire lives and have no idea they have this disease. So PLEASE spread the word and if you are looking for a great cause to donate to, this is a great one.  I had 2 kids and both of them yes BOTH have Chiari. Alex is another story for a later date. He has been diagnosed as well prayerfully God will let me deal with 1 brain at a time. Keep your fingers crossed.....

Love,
Keri ( mamma of princess Alyssa known to our family as "Sissy") 

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