I am Phillip and new here.
I am the care partner to my wife who was diagnosed in 2020 with Chari Malformation Type 1 with Syringomyelia (C2 - T11).
Decompression surgery was done in 2020 and laminectomy in 2022 for spinal shunt.
We have a host of professionals on the team - Neurologist, Nero Surgeon, Occupational Therapist, Physio Therapist, Speech Therapist, BioKinetics and Psychologists (Both for Me and Mrs)
We use both Pharmaceutical and Herbal drugs to address and manage the symptoms and there is nothing more clinically that can be done.
I joined the community with the hope that our experience on this journey may be of insight or help to others. Research into these conditions is ongoing and each patient is different. Having to deal with is condition in our 40's brings with it a whole host of physical, emotional and mental challenges.