Underdiagnosis

Most SCDS patients may have been given several tentative but incorrect diagnoses before being informed about SCDS. It is fair to say that the most affected and persistent patients have a higher chance of reaching an accurate SCDS diagnosis as they have many of the symptoms that are considered typical by doctors that have not seen a wide range of patients.

There are many reasons for the underdiagnosis of SCDS:

  1. The syndrome was first described in the medical literature as recently as 1998 and it still remains little known about amongst the majority of medical professionals.
  2. The diagnostics require a thorough battery of tests that takes time to perform, and involves equipment that is not always readily available; furthermore very few doctors have adequate training for interpreting the results of the tests.
  3. Many SCDS symptoms overlap with those deriving from other medical conditions, and inadequate or inappropriate testing leads to misdiagnosis.
  4. Many SCDS patients will have other concomitant inner ear disorders, such as BPPV, that may confuse the clinical picture.
  5. As fascinating as SCDS may seem, pathology connected to the ears has a relatively low status within the medical world. It’s a curious fact, considering that the brain, whose functions are thoroughly linked in with the inner ear, has top ranking in this respect.
  6. Doctors specialising in balance disorders are a fairly rare breed, prepared to devote copious time to discuss with dizzy patients symptoms that often are diffuse and fluctuating, but may be debilitating nonetheless.

The current situation is unacceptable. Apart from the suffering these circumstances involve, they create a high level of cost. It is expensive for the patients, but is also particularly costly for welfare states that may be called upon to provide abundant benefit payments to those patients since they are unfit for work as a result of their symptoms, as well as health care for the management of symptoms that simply won’t go away without specific and successful surgical repair operations developed specifically for SCDS.

Recorded misdiagnosis and diagnoses that can be seen concomitantly with SCDS (in alphabetic order):

  • Attention deficit hyperactivity disorder (ADHD)
  • Autism
  • CSF leak
  • Chiari Malformation
  • chronic bppv
  • Chronic Fatigue Syndrome (CFS)
  • Eustachian tube dysfunction
  • Fibromyalgia
  • Hypothyroidism
  • Intracranial hypertension
  • Lyme disease
  • Ménière’s disease
  • Migraine Associated Vertigo (MAV)
  • Myalgic Encepalomylitis (ME)
  • Patulous Eustachian Tube (PET)
  • Post-concussive syndrome
  • Post-viral fatigue syndrome
  • Psychological/mental problems
  • Whiplash

The list is incomplete.  Please note that SCDS can be misdiagnosed as one of the above and/or be present concomitantly with the above.  In fact, some of these diagnoses are suspected to be more commonly present among the SCDS population.

See also related diagnosis.

 

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