The symposium is co-organised by The Ann Conroy Trust, in association with Aesculap Academia.
The Ann Conroy Trust is Registered Charity No: 1165808.
We provide Support, Education and Research for patients living with Chiari Malformation, Syringomyelia and associated conditions.
F28 Presenting symptoms of Chiari malformation as seen from the patient’s perspective.
Burton L, Brereton G, Brereton N, Flint G.
The Ann Conroy Trust support helpline receives an average of 140 calls each month. Callers are understandably concerned about the implications of their (usually) recent diagnosis of Chiari and/or syringomyelia. Not uncommonly, frustrations are aired about delays in diagnosis and an apparent unwillingness of medical professionals to accept the relevance of many presenting symptoms. Following on from a pilot study, we carried out a more detailed survey of patient experiences when being advised by medical professionals.
A Survey Monkey questionnaire was constructed for patients diagnosed with Chiari malformation. Invitations to complete this were extended to potential participants via social media platforms used by patient support groups in a number of countries.
A total of 741 responses were received. Principal reported symptoms included headaches (88%), neck pain (75%), dizziness (68%), balance problems (67%), tingling/numbness in arms and hands (53%) and hearing disturbances (50%). Other reported symptoms included nausea and limb weaknesses. Whilst 37% of respondents were diagnosed within 6 months of seeking medical help, for 18% diagnosis took 6 years or longer. More than half (59%) did not feel that the specialist who diagnosed their condition understood it, with 48% being told that their Chiari malformation was an incidental finding. Following surgery Valsalva headaches resolved in 52% of cases. Other symptoms improved significantly in 38% of respondents, with 44% reporting a slight improvement. The remaining 18% reported no improvement.
Medical professionals vary in their ability to provide patients with acceptable explanations about their condition. Many patients therefore rely upon educational material prepared by dedicated support groups. Such information should never be taken as medical advice but can serve to help a patient better understand what a physician or surgeon is telling them during medical consultations.