Chiari Malformation- Surgery

Last year my daughter Isabella was diagnosed with Chiari Malformation. Chiari Malformation is a condition in which the brain tissue extends into the spinal canal, usually it’s present at birth but can be caught later on. In our case Isabella went undiagnosed for many years. As Isabella grew she suffered from many symptoms,each year her diagnosis went overlooked by many doctors. Chiari symptoms vary from affecting your muscular system, sensory and visual function. Isabella suffers from muscle weakness, problems with coordination, stiff muscles, overactive reflexes, blurred vision, double vision, and sensitivity to light headache, nausea, ringing in the ears, vertigo,ect. The list of symptoms is pretty long making everyday task difficult. Alone these symptoms may not seem like a big deal but collectively over the years they have became debilitating for her. Due to Isabella Chiari she also has a build-up of fluid in the cavities of her brain called Hydrocephalus.

Some days I would see her struggle to focus or just get out of bed and other days she’s just your average moody teenager.

Luckily for us we have been blessed to have met an amazing doctor/specialists that I will forever be thankful for. He’s helped diagnose Isabella and put us in contact with the best Chiari neurosurgeon in the area. Isabella has had testing all year long and finally has been approved for brain surgery.

On February 8th 2023 we will be going to Philadelphia CHOP. Where the Neurosurgery’s team will preform a Craniotomy and Chiari decompression surgery. I ask that all our friends and family keep us all in your prayers and thank you to anyone who has supported us during this time. It has been difficult on us all emotionally ,and unfortunately financially as well. This news was totally unexpected and has required much travel and added expenses. Any donations made will help alleviate some stress during Isabella surgery and recovery.

I will keep everyone updated as surgery day approaches.

In the meantime please spread awareness/advocate for children with Chiari Malfunction & Hydrocephalus