Some Members

Some members of Angioma Alliance UK have chosen to put details of what's happened to them online.

Scott (24) had a cavernous angioma 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 (45) had a number of seizures before receiving a diagnosis of cavernous angioma. Penny responds well to medication and neurologists have advised a wait and see approach. Penny's angioma is located in the area affecting speech.

Mark (38) experienced a bleed in January 2004 and was diagnosed with cavernous angioma 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 (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 (3 years, 9 months) was diagnosed at seventeen months with multiple cavernous angiomas. 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 cavernous angioma at the age of 14 and Anne-Marie is currently waiting for her own MRI study.

André (43) has two cavernous angiomas in the left ponto-medullary and left posterior frontal area. These angiomas 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 cavernous angioma. Sacha had surgery in 2001 with Dr. Spetzler in Arizona but had a further haemorrhage in 2004 and repeat surgery in November.

Katie (31) 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 recently qualified as an occupational therapist.

Ian (42) was diagnosed with cavernous angioma sixteen years ago. His symptoms, which are progressively worsening, are a Holmes Tremor to the right side especially the right arm; dysarthria (slurred speech); diplopia; 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 Angioma Alliance UK.

In our Members' Area, accessible only to members of the Angioma Alliance, 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).