The Common Thread Searching For The Unexplained

Diagnosis of superficial siderosis is rare. It’s so unique in fact if you searched for information on one of the national or international rare disease databases until the last few years it wasn’t listed.  We should be glad so few will face a diagnosis of superficial siderosis, but you can’t help but wonder.

Is there a common thread to be found?

I find myself thinking about this subject a lot. Dr. Levy has said they don’t know why some people are overwhelmed by the blood infiltration. An unlucky spin of the wheel. We’re not medical professionals but what if we brainstorm a little and toss around a few ideas.

First, let’s talk about what we do know.

1. Superficial Siderosis is not hereditary; You aren’t born with it.
2. Superficial Siderosis is not contagious; You can’t spread it or catch it.
3.  Age or gender do not play a significant role in the diagnosis; Patients were diagnosed, in the past, at an older age due to the slow nature of the progression, but newer MRI technology is making earlier detection possible.
4. All confirmed superficial siderosis patients had experienced unnatural blood infiltration into their central nervous system; Trauma, surgery, aneurysm or stroke that caused long-term bleeding.
5.  We know the majority of the population will absorb this blood back into their system with no residual effect; Superficial Siderosis patients are the exception.

All superficial siderosis patients have hemosiderin deposits which float around in their spinal fluid until it finds an inconvenient location to stick; The pial surfaces, your cerebellum, brain stem, and nerves traveling through your CNS.

The question now becomes “What is the common thread between the physiology of superficial siderosis patients?” Why does hemosiderin build to such a level in their body when it doesn’t happen in the average person.

So far we’ve identified one thing

All patients are unable to fight the neurodegenerative effects of free iron after it escapes from its ferritin binding in your hemosiderin deposits.

You’re right; I don’t have a lot to do on a Sunday except pose hypothetical questions to the universe. But I do have an uneducated theory. You have to return to play “what is the same?’ Bleeding, yes. Hemosiderin deposits, yes. A major traumatic health event in your life, yes. What is the one thing in common with all of this?

• Xrays
• CT Scans
• Cardiac Imaging tests
• Nuclear Medicine

What do all these things have in common? Ionizing radiation. If you’ve been in an accident, had an aneurysm, a tumor, headaches or any number of health events you may have had multiple procedures using this technology. Radiologists take extreme care when working with their equipment.

Many superficial siderosis patients had numerous prior health concerns that required medical testing. Gary suffered exposure from low dose ionizing radiation during his military service. It caused the growth of a benign tumor inside his spine at C-2/C-3. Then came the x-rays and CT scans. The removal of this tumor in 1992 left a dural defect. Fast forward to 2018; you all know the rest.

The average person is not affected by the small amount of ionizing radiation received from a few scans over the years.But, what if your health problems required a higher instance of testing? What if it is older equipment with higher exposure levels? What if you are part of the population who experiences DNA changes on a cellular level when exposed to low dose ionizing radiation? What if these cellular changes occur in the pia matter? Would that be a reason hemosiderin deposits form at neuro-toxic levels? Remember, superficial siderosis patients are not average.

Radiation exposure from medical diagnosis may
contribute to the etiology of neurodegenerative
diseases¹

These questions would unfortunately only provide an answer to why some people develop superficial siderosis and the majority of the population will not. On the priority scale of research projects, it is low on the list.

I’m sure I’ll never know the answer unless some sweet grad student wants or needs a random research project. It’s a hypothesis on my part, and in the end, I’m just a person who loves someone with superficial siderosis.

¹Long-term effects of ionizing radiation on the brain: cause for concern?
Stefan J. Kempf • Omid Azimzadeh •Michael J. Atkinson • Soile Tapio

An article in Radiation and Environmental Biophysics · October 2012
DOI: 10.1007/s00411-012-0436-7 · Source: PubMed