Superficial siderosis can be excruciatingly draining on everyone it touches. Sometimes it feels like we’re running on empty. It’s been a while since I’ve shared what’s been going on with Gary. Our living with superficial siderosis. I’ve been reluctant to… Read More... "Running on Empty"
Author: Rori Daniel
Welcome to the Superficial Siderosis Discussion Boards While the popularity of social media has shown us a way to connect globally with those diagnosed with superficial siderosis, you might be surprised how many SS patients do not have a Facebook… Read More... "Community Forum Launches"
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?"
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"
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"
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"
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"
Protecting Cognition and Memory One detail Gary’s neuropsychologist brought up was his low vitamin D level. While it may be common knowledge calcium and vitamin D help maintain healthy bones, we had no idea their role in cognitive decline. Studies… Read More... "Feed Your Brain Checking Vitamin D Levels"
Chelation Therapy For Superficial Siderosis In cases of superficial siderosis, attempting to remove the hemosiderin deposits with the prescription chelator deferiprone will be an unfamiliar treatment option to most physicians. If you have made a personal decision to try this… Read More... "Follow these Seven Steps To Begin Your Chelation Experience"
The Anticoagulant Effect on Active Bleeds Suppose you have an identified or suspected active bleed. In that case, your doctors need to be aware of the hazard blood thinners pose to your hemosiderin layer. Your body may have taken years… Read More... "The Hazard of Blood Thinners"
Finding care for superficial siderosis patients moves in slow motion—the time spent searching for a diagnosis—next, searching for information. In May of 2015, while we were still in an early stage of information gathering after Gary’s diagnosis, I created this… Read More... "The Long Journey Here | Neurosurgery"