common thread

The Common Thread Searching For The Unexplained

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common threadDiagnosis 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. 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. 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

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2 Replies to “The Common Thread Searching For The Unexplained”

  1. Morris Butchart

    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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