Some Members
Some members of Cavernoma Alliance UK have chosen to put details of what's happened to them online.
Scott (then 24) had a cavernoma during his final year of studies at the University of Plymouth. Scott underwent successful Gamma Knife Surgery in 2004 and since his treatment has run two half marathons plus the 2004 London Marathon.
Penny (then 45) had a number of seizures before receiving a diagnosis of cavernoma. Penny responds well to medication and neurologists have advised a wait and see approach. Penny's cavernoma is located in the area affecting speech.
Mark (then 38) experienced a bleed in January 2004 and was diagnosed with cavernoma in the ponto-medullary junction of the brainstem. Mark currently has few neurological deficits and has elected for watch and wait strategy with a yearly MRI.
Emma (then 35) had two brainstem haemorrhages in 2002 which resulted in ten hours of surgery. Emma is now fully recovered despite having further surgery due to the leaking of cerebro-spinal fluid.
Anne-Marie's son Owen was diagnosed at seventeen months with multiple cavernomas. Despite having hundreds of seizures and being hospitalized for six weeks where he was given steroids and anti-convulsants, Owen is now healthy but with significant speech and language delay. Anne-Marie's sister also had a bleed from cavernoma at the age of 14 and Anne-Marie is currently waiting for her own MRI study.
André has two cavernomas in the left ponto-medullary and left posterior frontal area. These cavernomas continue to cause diplopia (double vision) and numbness to the right side. In July 2006 he had Gamma Knife treatment at The Royal Hallamshire Hospital, Sheffield.
Sacha Bonsor is the nationally recognised writer of Dipped Into Oblivion, a study of her own battle with brainstem cavernoma. Sacha had surgery in 2001 with Dr. Spetzler in Arizona but had a further haemorrhage in 2004 and repeat surgery in November.
Katie has a brainstem cavernoma which has bled twice in 1990 and 2001 in addition to other cavernomas located elsewhere in the brain. Katie's 2001 bleed left her with marked physical deterioration but no cognitive impairment. Katie has since qualified as an occupational therapist.
Ian was diagnosed with a brainstem cavernoma in 1987. His symptoms, which are progressively worsening, are a Holmes Tremor to the right side especially the right arm; dysarthria (slurred speech); diplopia (peripheral double vision); and gait ataxia (mobility difficulties.) After completing his Ph.D. at the University of California in 1991, Ian taught at USC in LA before returning to England in 2002 and is now a patient at Queen Square, London. Ian co-ordinates Cavernoma Alliance UK.
In our Members' Area, accessible only to members of the Cavernoma Alliance UK, we have longer versions of these stories, along with many more stories of members. If you or someone close to you is a sufferer then click here to apply to become a member (it's free).