Audiovestibular Symptoms..

15th of this month, Angel went to Clinic for a hopeful diagnosis of her audiovestibular symptoms.
The consultant (Dr Dasgupta) confirmed that there seems to be a shrinkage of the cystic component of her tumor.
However, from the audiovestibular side, she has been having a hyperacusis since a very early age. (Since being diagnosed with the brain tumour last year. Bev has realised a link in certain elements since Angel was a baby – not liking noises or traffic, being unable to listen to fire works. She cannot have tv loud/radio/would struggle at a concert etc) Although she is doing well at school despite this, sounds of alarms, bells, loud noises etc can cause her significant distress.
She sometimes has problems with her balance, travel sickness and co-ordination (random dizzy spells, headaches or brain fuzz type moments can be frequent)
The results of the clinic concluded that although at a day-to-day level, Angel’s Audiovestibular system is within normal limits, on this ocasion the ocular motor eye movements show that she is having vestibular processing and integration problems somewhere in the region of her mid brain.
Observations of her previous MRI scans show that her craniopharyngioma was extending beyond the suprasellar region to involve the brain stem and the third and lateral ventricles (this will explain the eye signs)
The consultant advises that there is a 30% chance that Angel will be able to respond to customised vestibular rehabilitation. Although desensitisation may work and in turn be beneficial, unfortunately avoidance behavior is very difficult to treat.
Angel will soon get an appointment to revisit the consultant at his aetiology clinic and this will all be explained in more detail, thus when we have a better understanding I can write a better post!
In short… yet more hospital appointments for Angel and Bev 😦
Update on Tuesday hopefully they will know more.


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