Is A Cochlear Implant Right For You? Hearing loss affects 95% of superficial siderosis patients. Specialized hearing aids designed to help word recognition in bilateral sensorineural hearing loss work very well for most patients in the early stages. Unfortunately, many… Read More... "The Cochlear Implant Experience"
The Neurosurgery Repair Process In this piece, I’m going to share my personal experience of when I was admitted for neurosurgery to have a pseudomeningocele repaired, which was at the back of my head. The pseudomeningocele was believed to have… Read More... "The Road To Neurosurgery"
Living Your BEST LIFE with Superficial Siderosis Our readers living with Superficial siderosis should be aware that living your best life means you need to look beyond simply treating the symptoms. Both your physical and mental health will benefit. By… Read More... "Exercises for Balance and Mobility"
Changes Your brain is a complex system that controls your body, guides your thinking, and filters emotional responses. Because infratentorial superficial siderosis (iSS) causes progressive neural dysfunction, it’s natural to be concerned about how a person’s thoughts, feelings, and cognitive… Read More... "Should You Visit A Neuropsychologist?"
Patient to Physician Communication a two-way street Quite often, patients with a rare condition experience a variety of complex symptoms. Do not let an appointment with your doctor leave you feeling as confused. Healthcare providers are constantly under pressure to… Read More... "Tips For Improved Patient-Physician Communication"
The Dangers Of Mobility And Balance Impairment If you’re living with mobility or balance problems, this is a familiar story. You’re innocently walking, and out of nowhere, an angry rogue floor knocks you down. No reason, just walking, then BOOM, … Read More... "What Is Your Fall Risk?"
Managing Neuropathy Pain Typically, a healthy nerve will only send a signal when it is stimulated, e.g., a nerve in the hand that senses temperature will stay quiet until the hand gets near the flame on the stove. However, an… Read More... "Managing Neuropathy Pain"
Dialing Down the Body Pain of Superficial Siderosis Gary always hurts It’s a fact-of-life he can’t run from; from his head to his toes, 365 days a year, 24-hrs a day. Pain. Most days, his pain scale reads 3 or… Read More... "Dialing Down The Pain"
Superficial Siderosis and CSF Leak – An Intertwining Complication Superficial siderosis and CSF (cerebrospinal fluid) leak go hand in hand. If blood can infiltrate the CSF, then CSF can leak out as well, which is what it did in my… Read More... "Superficial Siderosis and CSF Leak"
Living Your BEST LIFE with Superficial Siderosis Our readers living with Superficial siderosis should be aware that living your best life means you need to look beyond simply treating the symptoms. Both your physical and mental health will benefit. By… Read More... "Exercises for Balance and Mobility"
Patient to Physician Communication a two-way street Quite often, patients with a rare condition experience a variety of complex symptoms. Do not let an appointment with your doctor leave you feeling as confused. Healthcare providers are constantly under pressure to… Read More... "Tips For Improved Patient-Physician Communication"
Living Your BEST LIFE with Superficial Siderosis Our readers living with Superficial siderosis should be aware that living your best life means you need to look beyond simply treating the symptoms. Both your physical and mental health will benefit. By… Read More... "Chair Yoga for Mobility and Balance"
Living Your Best Life with Superficial Siderosis Our readers living with Superficial siderosis should be aware that living your best life means you need to look beyond simply treating the symptoms. Both your physical and mental health will benefit. By… Read More... "Finding The Right Healthy Diet"
When Neurology Has No Answers Greetings, fellow Superficial Siderosis patients; my name is Bena Travis. I’m a 62-year-old retired florist and wedding planner living in the USA’s beautiful Western Kentucky lakes area. My husband and I live on the lake,… Read More... "Just Go Home And Live With It"
Not A Head Cold? My name is Julianne. I am 64 years old and live in Devonport, a city in northern Tasmania. Tasmania is a large island state located 240 km (150 mi) south of the Australian mainland. I was… Read More... "Julianne’s Story"
Getting Out Again I was really looking forward to meeting my friends for the first time in 14 months; however, it wasn’t without a huge wave of anxiety. After all, I had only been out with them once in about… Read More... "Remembering What it is Like to Get Out"
Waking up for the Big Day I woke up to a bad headache, probably a bit of nerves and excitement about going to the best hearing institution in the United Kingdom. After all, I’m a musician and what’s the fun… Read More... "Research Day"