The following has been submitted (as written by one of LivingwithTN moderator)against a Monday deadline for comment, on US Social Security Administration revised criteria for evaluating medical disorders.
I write as a social networking site moderator and information analyst for over 5,300 chronic facial pain patients around the world. I have over 18 years experience as a technically trained (Ph.D. Systems Engineering) medical layman, author and information analyst who has supported chronic facial pain patients online and by phone, at the US Trigeminal Neuralgia Association, Ben's Friends, About.com, and WebMD. I daily interact in postings and chat rooms with patients medically diagnosed with trigeminal neuralgia, trigeminal neuropathic pain, cluster headache, hemi-facial spasm, and various cephalgias. I am in a position to observe the debilitating effects of these disorders, and the often equally debilitating side effects of medication and failed surgeries.
I urge SSA to incorporate both classic Trigeminal Neuralgia and Trigeminal Neuropathic Pain ("Type 2" or "Atypical" Trigeminal Neuralgia) as actionable neurological disorders whose symptoms should qualify patients for SSI Disability when properly evaluated and confirmed by a neurological professional (neurologist, craniofacial pain specialist, neurosurgeon or appropriately trained general practitioner). These neurological disorders are known to create the worst acute and chronic pain known to medical practice, exceeding even cancer or orthopedic pain in intensity and impact. There are no known cures for any of these disorders, though some patients are able to manage their effects medically.
By the same token, I urge disqualification of the terms "Atypical Facial Pain" or "psychogenic pain" from consideration as medical entities. As noted by the Medical Advisory Board of the US Trigeminal Neuralgia Association, both are equivalent to "facial pain of obscure origins". So-called "psychogenic pain" as a diagnosis is also directly responsible for denial of appropriate medical evaluation and care to tens of thousands of patients whose suffering is actively increased by assignment of the diagnosis and invalidation of the patient's observations of their own symptoms and responses to treatment.
The impact of these disorders on neurological patients is well documented and horrendous. See, for instance, the TN Fact Sheet published by the National Institute for Neurological Disorder and Stroke [ http://www.ninds.nih.gov/disorders/trigeminal_neuralgia/detail_trigeminal_neuralgia.htm]. I welcome follow-up by phone or email from members of the SSA committee charged with updating Medical Criteria for Evaluating Neurological Impairments.
Richard A. Lawhern, Ph.D.
Resident Research Analyst
Living With TN -- An On Line Community within the Ben's Friends cluster for rare medical disorders.
Fair Disclosure: I wrote and coordinated external validation for the most recent revisions to the NINDS Fact Sheet on Trigeminal Neuralgia.