Josh's brain decompression surgery
Organized by: Michelle Roche
A year and a half ago a trip to Chilton Memorial Hospital to find out why my 13 year old son was getting migraines changed our lives. We expected to get a CT scan and leave with some medication to relieve the headaches...instead he was diagnosed with Chiari Malformation with a cyst in the center of his brain. We left with 3 appointments with brain surgeons in the next week to discuss our treatment options. Chiari Malformation is a birth defect. The lower part of his brain developed below his skull and is compressed against his brain stem causing constriction of spinal fluid flow and causes symtoms such as severe headaches, scarring of the brain stem which leads to loss of feeling to the extremities, drop attacks (sudden fainting) vision problems, eating/swallowing issues, talking and breathing disorders. To complicate this he has a retoflexed ondontoid, also compressing his brain stem at the same location. We have been monitoring his symptoms and recently discovered central sleep apnea. He stops breathing 66 times a night. This is of great concern and has lead to serious brain decompression surgery scheduled in 2 weeks, March 9th. Fortunately we have a great team of 4 surgeons from NY Presbyterian Hospital. Its a 12 hour surgery that will require a week in ICU and 4 weeks out of school. The school system will send a home instructor for 1 hour each day he is out. Insurance is covering his medical expenses and really grateful for the possibility of staying at the Ronald McDonal House to recharge and freshen up to be human again for Josh.
Josh is an honor roll student, a caring, loving son, brother and friend to our community. He has been completely awesome about all the testing, probing, and disruption to his life. He hates missing school and is determined to get back to normal ASAP. I am extremely proud of this handsome and extremely responsible young man he has become and look forward to the end of this road. Full recovery is 1 year. Josh is an avid ATV rider, he is amazing with a wrench and has earned his own money since the age of 11 to purchase is own ATV fix it up and trade up. He has done this every year. Josh does not play video games or play sports, this IS his passion. He will have to suspend riding till full recovery. His attitude is so positive, in one of my many conversations I was apologizing for this disrruption to his life, he's also missing 8th grade semi formal, he said, "Mom, no need to be sorry. It is what it is and it's only 1 year out of my life, therefore no sorry necessary. I got a whole lot more to to enjoy after this." He will have to where a collar to protect him it costs $300 a small price to pay. His surgery will include 2 rods and 4 pins and a plate to hold his head on till he is completely healed. Because they will remove the base of his skill and the vertebrae that currently keeps his head stable, and on his shoulders.
My purpose is to raise awareness of Chiari Malformation. Untreated it can cause severe disabilities. Nothing triggers the progression of severe symptoms. It is completely unpredictable and the only resolve is surgery. Please pass this one to all you know...help a child or adult find relief in knowing what they have. Fortunately we did, and Josh will never have to worry about the disabling symptoms others have endured.
Thanks for reading this far, it's been quite a journey for us and will be for the next year. In advance thank you, for your prayers, thoughts and support.
Hugs to all, Michelle (Mom)