CHIARI STRONG has launch their online retail store!! Please check it out!
PROFIT FROM EVERY PURCHASE HELPS CHIARI MALFORMATION SURVIVORS
Warrior's this is a MUST READ: Amazing article from KVUE
The neurosurgeon that did my second decompression and my tethered cord repair, Dr. Bolognese, said the group plans to abolish the 5 mm rule which would have a positive economic impact on many of you.
"The 5 mm rule can give the insurance (companies) the grounds for denial for proposed surgery when there is a herniation that is shorter than 5 mm."...
This is fantastic news for those out there that are being rejected from insurance because they are 5mm or less in their herniation!
They are also looking to rename our disorder...from Chiari Malformation to Chiari Anomaly. Which, I think is a better name. With 85 different symptoms (memory loss, headaches, blurred vision, numbness, nausea....) anomaly makes more sense.
We are also far from alone in this battle...it is believes that saying 1 in 1000 people have Chiari is extremely conservative.
Jenni Lee, an Anchor on KVUE was diagnosed this year and will be a very loud voice for all of us!
Stay strong my Warriors!
Research and education continues...
Recently, Johns Hopkins neurosurgeon Judy Huang hosted a webinar on Chiari malformations, a condition where the cerebellum, at the back of brain, slides into th...e space of the upper spine. Here are three takeaways:
1. In a Chiari 1 malformation, too little space in the lower part of the brain forces brain tissue (called the cerebellar tonsils) into the spinal canal.
2. Chiari 1 malformation symptoms vary with the individual; headache and neck pain are two of the most common symptoms people have related to Chiari 1 malformation. However, many people with the condition experience no symptoms at all.
3. An MRI scan is the most common way doctors diagnose the condition. Often, a patient is undergoing this imaging test for a completely separate reason, and the doctor notices the malformation.
Join Johns Hopkins neurosurgeon Judy Huang on Tuesday, May 16, from 7 to 8 p.m. ET discuss Chiari malformations, a condition where the cerebellum, at the back of brain, slides into the space of the upper spine.
We can all identify with this one at various levels. #Syringomyelia and #Chiari are complex and there are what we can only term as exacerbations and remissions... that repeat in cycles over and over again. One "good" day could result in many days in bed "paying" for the normal activity and for some it can be a hefty price! For those of you struggling with this one we want to say you are never alone and here you are understood!
Here is a little holiday humor from my family to yours!
Christmas is a time for nostalgia, but it is also a time for making new memories. Enjoy the fellowship of new friends, and cherish the company of family in this season of loving and sharing. Warriors, I am proud of your fight, your strength and the lives you live. Celebrate with your loved ones, remember the good times and start making plans for a better new year.
Merry Christmas and Happy New Year Warriors!