The first 12 years of my life were rather uneventful, but one day is all it took to change everything. Since then I have had 3 brain surgeries and multiple other surgeries to contend with multiple conditions a few of which are rare.
I was diagnosed with Chiari Malformation (Type 2) where not only my cerebellum but my brainstem are both herniated out of my skull. My cerebellum is herniated out 24mm and this extensive herniation lead to CSF fluid backing up down my spine and causing a cyst (syrinx) that ran the length of my spine from C2-T10 and the entire width in some places and perforating the cord in other areas. Giving me a 2nd rare condition of syringomyelia.
While my first surgery helped reduce the width of my syrinx further surgeries were required. However symptoms were still worsening and more were coming. During my surgeries I was also diagnosed with hypermobile Ehlers Danlos which causes multiple subluxations and dislocating of joints and internal issues. I was later also diagnosed with dysautonomia in the form of postural orthostatic tachycardia syndrome and inappropriate sinus tachycardia. My resting heart is usually between 100-120 beats per minute.
Among other things I also suffer central sleep apnoea, hypersomnia and chronic pain. Due to the chronic wide spread pain I had an intrathecal pump implanted 6 years ago. This give me morphine, anaesthetic and other medication straight to my spine area. Due to this I have been able to get off disability and with a lot of blood sweat and tears I am completing my Masters in medical science and work full time as a scientist.
Due to the lack of knowledge when I was diagnosed and need to connect I started the only Chiari and Syringomyelia Support group. We are looking at becoming a not for profit group this year and generate more awareness. I also support as co-admin an Ehlers Danlos support group.