The Common Thread Searching For The Unexplained


Superficial siderosis is ultra-rare. In fact, if you searched 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 often find myself thinking about this vey topic. Dr. Levy has said they don’t know why some people are overwhelmed by the blood infiltration. An unlucky spin of the wheel? I’m not medically educated but what if I brainstorm and toss around a few ideas?

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

  • Superficial Siderosis is not hereditary; you aren’t born with it.
  • Superficial Siderosis is not contagious; you can’t spread it or catch it.
  •  Age or gender do not play a significant role in the diagnosis; patients were diagnosed at an older age due to the slow nature of the progression, but newer MRI technology is making earlier detection possible.
  • 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.
  •  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 an overwhelming amount of free-iron molecules. They float around in the cerebrospinal fluid until curbed by ferritin and settle as hemosiderin on your tissue.
  • Most (if not 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.

I do have an uneducated theory. Let’s play What’s the Same? Long term bleeding, yes. Hemosiderin deposits, yes. A major traumatic health event in your life, yes. What’s one thing common with all of this?

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

What 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. You know the rest.

On average, a person will not be affected by the small amount of ionizing radiation received from a few scans over the years. What if your health concerns required a higher instance of testing? What if it is older equipment with higher exposure levels? What if you are part of the tiny population who experiences DNA changes on a cellular level when exposed to low dose ionizing radiation? Remember, superficial siderosis patients are not average.

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

Answers to these questions would only provide insight as to why some people develop superficial siderosis while the majority will not. On the priority scale of research projects it ranks as not important. I’m sure I’ll never know the answer unless some sweet medical student needs a random topic for a paper.  This is purely 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

About Rori Daniel

Living With Superficial Siderosis began as a way to keep family and acquaintances updated after my husband Gary was diagnosed with Superficial siderosis in 2014. We invite you to join us as we share the details of our life, finding care, and the search for answers of how to navigate this extremely rare disorder.


  1. Two things: almost exactly the same operation, only mine was c5-6, right down to he same kind of tumor .
    Second I’ve had exrays since I was born in 1950, many of them, that went on & on because of the rare (there’s that word again) congenital birth defect I was born with.
    So yes maybe being exposed to such might be one of the causes; but how many that have SS, have had chicken pox?
    I believe a study should also include that.

  2. Your case history is fascinating. You should consider writing us a guest post.

  3. Interesting. My first facial X-Ray was in the 70s. A large Polyp was found and removed from my lower right Sinus. I was employed as civilian engineering officer for many years in MoD weapons facilities between 1972 and 1997. Though I did not work directly on nuclear weapons I was involved in planning and management of their processing in the storage and servicing establishments. Part of my duties for several years was as a Radiation Protection Supervisor (Minor Sources). The Intra Dural Shwannoma tumour at T9/T10 in my Thoracic Spine found by MRI, in Nov 2008 was surgically removed in Feb 2009. Surgery which resulted in the giant Pseudomeningocele that was claimed to be a perfectly normal clinical finding following the double laminectomy and opening of the dura to access my spinal canal and remove the shwannoma tumour. The pseudomeningocele was not investigated and repaired until January 2012. At which time the German NHS located the larger than expected defect in my dura repaired the defect and filled and closed the cavity over the back of my spinal canal. In late 2011 the UK NHS Neurosurgeon admitted in writing to a colleague that he had been unable to fill and close the cavity he had created by removal of bone and muscle during the laminectomy as there had been no tissue nearby to allow him to do so before he closed the muscles over the back of my spine and the external wound in my back in 2009. The UK Neurosurgeon also claimed that what he in late 2011, just before I accepted the offer of investigative and corrective surgery was a Meningocele which had developed to fill the cavity he had created during the laminectomy in 2009. A cavity he then claimed could only be closed and filled by harvesting muscle from other parts of my body with plastic transport into the cavity. A procedure he claimed would not be worth the surgical risk to me the patient. That Meningocle being the perfectly normal clinical finding that in 2009 the Neurosurgeon claimed in an e-Mail had occurred on MRI imaging for all previous patients for whom he had operated on to remove spinal tumours over the years. Between June 2009 and 9 May 2011, I had Spinal MRI scans at 6 monthly interval then annually since. Several Brain MRI scans were done between 2010 and 2017 following emergency admissions as a suspect stroke. The described as very special MRI scan of my Spine. Head and Brain done in 2016 along with Phyisiology and Hearing tests resulted in the diagnosis of Mild Superficial Siderosis when UCHL NNC were asked to provide a second opinion on my claim that I had suffered slowly increasing CNS symptoms including hearing loss since 2009. NOTE: I was not aware that Pseudomeningoceles and associated Dural defects are the main cause of Superficial Siderosis until I contacted Dave Hill in New Zealand in January 2017, following the diagnosis of SS. After which I obtained copies of medical literature which confirmed that bleeding from Dural defects is the major cause of the iron deposits which result in progressive damage to the CNS known as Superficial Siderosis.

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