Purpose: To identify the relationship between thyroid eye disease (TED) and supraorbital neuralgia (SON) and establish a reliable approach to the diagnosis and management of TED-associated SON. Methods: This retrospective study included 1,126 patients. Demographics, active and inactive phase status and duration, and reactivation rate were noted. TED clinical activity was determined using the vision, inflammation, strabismus, and appearance assessment system, and TED severity was classified using the European Group of Graves' Orbitopathy system. Subtypes of periorbital pain were identified, and suspected SON was confirmed by supraorbital nerve block. Results: Of the study's 1,126 patients, 935 (83%) were deemed "active" at some point during the follow up and 34 (3%) remained "active" at the study's conclusion. Of the 2,251 eyes studied, 1,193 (53%) underwent orbital decompression. Of the 1,126 patients, 946 (84%) reported a retrobulbar "pressure" or "aching," but a distinct, more debilitating pain suggestive of SON was reported in 91 (8%). All 91 patients were given a supraorbital nerve block, and all had complete pain resolution lasting from hours to weeks. Eighty-eight (97%) of the 91 patients with SON-type pain underwent orbital decompression compared to 496 (48%) of the 1,035 without SON-type pain (p < 0.00001). A difference was found in the rate of TED reactivation between those with SON-type symptoms (8%) as compared to those without (2%), p = 0.01. Conclusions: SON of uncertain etiology appears to be a previously underreported but significant pain associated with TED. Paradoxically, although the SON does not appear to be related to the type or severity of TED on standard rating scales, the presence of SON was found to be associated with increased likelihood of both orbital decompression and TED reactivation.
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