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 moving towards a healthier diet, exercising to… Read More... "Wellbeing Therapy"
Finding Your Needle Leak in the Haystack While a traditional MRI may show the location of a pseudomeningocele, a Dynamic CT myelogram remains the suggested method to locate a suspected active bleed site or a dural defect in cases of… Read More... "Is Digital Subtraction Myelography the Answer?"
The Cochlear Implant Question It’s back to London once again, this time for a full day of tests to see if I’m a suitable candidate to receive a cochlear implant, which is a device that can potentially restore some hearing… Read More... "Cochlear Implant Assessment Day"
It’s always a good idea to prepare for your appointment, so you can get all the information you need out of it. Leaving with unanswered questions can cause anxiety and can leave you chasing things up when you’ve had the… Read More... "Preparing for a Medical Appointment"
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... "Reclaiming Your Independence, A Guide to Managing Hearing Loss"
Specially written for LivingWithSS.comRollene Janelle, Guest Author Superficial siderosis (SS) is considered a rare neurodegenerative condition. The prevalence of superficial siderosis is estimated to be one in one million individuals, with an estimated 200 diagnoses in the US for 2020.… Read More... "Improving Your Fitness"
Living with superficial siderosis – the patient’s journey Infratentorial superficial siderosis (iSS) is more commonly known as superficial siderosis of the central nervous system. It is a rare but sometimes disabling neurological condition that often affects hearing, balance, and mobility.… Read More... "UCL Presents A Virtual Live Panel Event"
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"