Pain

The search term “pain” was originally used for this section; as there were many respondent descriptions of “pain”, we categorized different experiences of pain based on description. The categories into which postings about pain were grouped are: burning pain, stinging pain, phantom pain, and general uncharacterized pain.  The latter encompassed all other reports of pain including throbbing pain, nerve pain, muscle pain, etc.

Respondents reported pain of different types starting immediately post surgery with at least one person reporting pain at 260 weeks (almost 5 years) post OI. Most reports of pain were within the first 40 weeks post OI with a median time of 24 weeks. Forty-three percent of the posting about pain were within the first 20 weeks (5 months) of surgery and seventy percent within the first 10 months.