Prognosis Superficial siderosis can damage the cranial nerves which could prevent a cochlear implant from working. It wasn’t an easy decision to make by any means, I had so many questions, but it all came back to the point that… Read More... "The Cochlear Implant Journey"
Category: Treatment Journey
Superficial Siderosis and CSF Leak
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"
The Hazard of Blood Thinners
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"
The Long Journey Here | Neurosurgery
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"
Radio Silence You may have noticed the silence of late. Life becomes busy and complicated. Sometimes you need to step back for a minute. Social media, vegetable harvest, and chicken season. Did I mention all the new doctors? Trips to… Read More... "Radio Silence"
Surviving The Neurology Ride
The Patient Experience With The Neurology Ride A visit to Gary’s neurologist often brings to mind when you step up to ride the tallest, most twisty ride in an amusement park. Your ride begins by slowly inching along, anticipating a… Read More... "Surviving The Neurology Ride"
Summertime Neurology Blues
We hit the road last week for another trek to see the neurologist. We usually enjoy these long rides up into the heart of Arkansas, but it seems we can’t escape the unplanned detours lately. We headed out with… Read More... "Summertime Neurology Blues"
Decoding The Superficial Siderosis MRI
Decoding the Superficial Siderosis MRI There has been a definite increase in people diagnosed with superficial siderosis. The improvements in neuroimaging have resulted in advanced iron-sensitive 2-D and 3-D MRI techniques. Thankfully you can now be diagnosed in vivo and, if… Read More... "Decoding The Superficial Siderosis MRI"
Neurology Roadtrip We made the journey to Gary’s quarterly neurology appointment this week to find an answer to his chronic headaches. Since he left the private healthcare sector last January and entered the VA system, long out-of-state road trips are… Read More... "Neurology Roadtrip"
The Neuropathy Chronicles 2.0
The Neuropathy Chronicles 2.0 You may remember from The Neuropathy Chronicles how we managed to tame the burning foot pain that is so familiar to Superficial Siderosis patients. Two years have passed, and TCM is still the winner. We saw… Read More... "The Neuropathy Chronicles 2.0"
A Whirlwind Testing Tour
Hope We’ve been doing the whirlwind testing tour with Gary’s many specialists these past few weeks. Not only was it time for his quarterly neurology follow-up, but we found ourselves eagerly waiting for his first MRI scan and hearing test… Read More... "A Whirlwind Testing Tour"
Quarterly Neurology Follow-Up
Quarterly Neurology Follow-Up The New Normal By the time we went to our quarterly neurology follow-up we had a pretty good list of questions. The cholesterol medication was a big one. What kinds of exercises could we safely add to… Read More... "Quarterly Neurology Follow-Up"