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?"
Category: Treatment Options
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"
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"
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"
I was diagnosed with Superficial siderosis in 2015, but it was late 2017 before I finally found a neurologist who was willing to listen and help me in any way he could. He agreed deferiprone (Ferriprox) was the only treatment… Read More... "Sometimes You Need A Win For Team Chelation"
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"
Taro Launches Specialty Generic Deferiprone Tablets, 500mg in the U.S. Taro Pharmaceutical Industries Ltd. announced the launch of a new specialty generic, deferiprone, an iron chelator indicated for the treatment of patients with transfusional iron overload due to thalassemia syndromes… Read More... "Generic Chelation Medication Set To Launch"
The holy grail of neurodegenerative disease research is discovering a pathway to healing—reversing neural damage, either through regeneration or surgical reconstruction. Our nerves control multiple biological functions. The complexity of cranial nerves has made regenerative therapies exceptionally challenging. The olfactory… Read More... "Combating Neural Damage"
When the two-year study on the efficacy of Deferiprone was published one finding stood out. Patient-participant physicians submitted MRIs during several stages of the study; differences in MRI equipment, software, and magnification produced data that was difficult if not sometimes… Read More... "Is Your Chelation Working?"
Researching a rare disease on your own is tricky. Superficial siderosis is a serious diagnosis and most of the early research papers we found scared us to death. At first glance, the prognosis seemed… #Deferiprone #Hemosiderin #SuperficialSiderosis Read More... "The Decision To Choose Chelation Therapy"
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"
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"
Our Chelation Journey This past week has seemed like a bad episode of Mission Impossible. We found ourselves desperately racing the clock trying to schedule what might be Gary’s last MRI of his brain. Strangely enough, this month marks the… Read More... "Countdown To The Last MRI"
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 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"