The story of Gary
In January of 2014, our neurosurgeon called with great news. No sign of tumors. Gary could make arrangments to see if an otolaryngologist could discover the cause behind his rapidly declining hearing. Being curious Gary popped a copy of the radiologist report into his laptop, Hmmm? What is Superficial Siderosis the report references?
We called the office and asked his nurse about the radiologist’s findings. We read her a list of symptoms we found online which she relayed to the doctor. His response, “It’s so rare what are the chances he even has that?”
Ten years of unexplained symptoms and testing. Knowing something is wrong but hearing over and over another test came back negative. It wears you down. Finally, a diagnosis and your first thoughts are now we’re getting somewhere. The relief was short-lived. One person in three million will develop Superficial Siderosis.
Superficial Siderosis is a neurodegenerative condition caused by an accumulation of hemosiderin on the surfaces of the brain and spinal cord.
Hemosiderin deposits form after blood infiltration into the central nervous system. Blood entering your spinal fluid is a typical event after a trauma or surgery. A body will rid itself naturally of this blood, but in rare cases, chronic bleeding will overwhelm the body defenses.
Cells in your CNS attract this hemosiderin to the cerebellum, fourth, fifth, sixth, eighth cranial nerves, brain stem and spinal column. Iron buildup covers these areas and over time results in a neurotoxic effect on nerve function.
Sensorineural hearing loss, ataxia, and myelopathy are considered to be the three classic signs of Superficial Siderosis. There are now over 30 recognized clinical symptoms which can all mimic another diagnosis. Superficial Siderosis is often misidentified as Multiple Sclerosis It turns out a simple MRI can answer the question definitively. In January of 2014, our neurosurgeon called with great news. No sign of tumors. Gary could make arrangments to see if an otolaryngologist could discover the cause behind his rapidly declining hearing. Being curious Gary popped a copy of the radiologist report into his laptop, Hmmm? What is Superficial Siderosis the report references?
We called the office and asked his nurse about the radiologist’s findings. We read her a list of symptoms we found online which she relayed to the doctor. His response, “It’s so rare what are the chances he even has that?”
Ten years of unexplained symptoms and testing. Knowing something is wrong but hearing over and over another test came back negative. It wears you down. Finally, a diagnosis and your first thoughts are now we’re getting somewhere. The relief was short-lived. One person in three million will develop Superficial Siderosis.
Superficial Siderosis is a neurodegenerative condition caused by an accumulation of hemosiderin on the surfaces of the brain and spinal cord.
Hemosiderin deposits form after blood infiltration into the central nervous system. Blood entering your spinal fluid is a typical event after a trauma or surgery. A body will rid itself naturally of this blood, but in rare cases, chronic bleeding will overwhelm the body defenses.
Cells in your CNS attract this hemosiderin to the cerebellum, fourth, fifth, sixth, eighth cranial nerves, brain stem and spinal column. Iron buildup covers these areas and over time results in a neurotoxic effect on nerve function.
Sensorineural hearing loss, ataxia, and myelopathy are considered to be the three classic signs of Superficial Siderosis. There are now over 30 recognized clinical symptoms which can all mimic another diagnosis. Superficial Siderosis is often misidentified as Multiple Sclerosis It turns out a simple MRI can answer the question definitively.
Gary is no longer able to work, but we hope by sharing his story we can spread the word. One person in three million will be diagnosed with Superficial Siderosis. Superficial Siderosis patients have no official organization. There is a small group who have gathered on social media sharing information and moral support. A few members in the UK have formed a charity in hopes of attracting funding for continued research, but in reality, most efforts are solo.
Gary is no longer able to work, but we hope by sharing his story we can spread the word.