Welcome to Living With Superficial Siderosis

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May 15, 2018

What Is Superficial Siderosis?

 

Superficial siderosis is a slowly progressive chronic neurodegenerative condition most often caused by past trauma or surgery that introduced bleeding into your central nervous system. The body is designed to rid itself naturally of blood infiltration into the central nervous system (CNS), but in rare cases, this longterm bleeding overwhelms your system. The result is an accumulation of hemosiderin on the pial surfaces of the brain and spinal cord.

These specialized cells attract this blood residue to the cerebellum, brain stem, cranial nerves, or spine. Hemosiderin (iron)  accumulates over time in these areas resulting in a neurotoxic effect on nerve function and cerebellar degeneration. Hearing loss, ataxia, and myelopathy related clinical symptoms mysteriously progress over time mimicking more widely recognized diseases. Superficial siderosis is so rarely seen a correct diagnosis is often not found for years. Improved MRI technology and increased awareness have allowed radiologists to be often the first to report an accurate diagnosis.

There are very few treatment choices for superficial siderosis.

 

You can choose to live with the natural progression. Your physician may be able to locate an active bleed and perform a surgical repair to stop fresh blood infiltration. You can opt to try chelation drug therapy to remove the iron residue.

The only option with a guaranteed result is living with the natural progression. Depending on the severity and area your iron deposits are located the symptoms will continue to progress until your quality of life is affected. If you, or someone you know, has been diagnosed with superficial siderosis the search for answers is beyond frustrating. Learning to cope with this rare disease is a challenge. Finding a support network is essential.

Unexplained symptoms plagued Gary for many years.

 

Ten years of searching for answers passed before a radiologist recognized the signs of superficial siderosis in September 2014. We invite you to follow our journey through this diagnosis as we share how we deal with the clinical symptoms, treatments, therapy options, research and general information we’ve collected along the way.


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April 12, 2018

Meet Robert Cameron

 

Robert Cameron has seen the world. Graduating with a degree in Marine Transportation from the United States Merchant Marine Academy he rose through the ranks and took command of his first vessel in 1980. A voyage that would continue for more than 25 years, Captain Robert traveled the world; Australia, New Zealand, South Africa, Japan and the United States making memories for a lifetime.

A meningocele was found wrapped around the nerves at the T-4 area of Roberts’ spine. The discovery led to a 12-hour surgery and resulted in an uncontained slow bleed. In 2005, a diagnosis of superficial siderosis changed his course.

Retirement finds him splitting his time between Florida, where he is he under the care of Dr. James Meschia, Head of Neurology Jacksonville Mayo Clinic and his summer home on Nantucket island. Opting to give chelation therapy a chance, he feels there has been a slowing of the progression and even seen some improvement.

Not one to let an opportunity slip past he decided to battle back …… Continue Reading

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