This lovely lady is my partner Pam. She is the mother of our two beautiful children, Bethany 6 and Bobbie 2, She has an extremely rare condition called superior semi circular canal dehiscence which means she has a hole in between her inner ear and brain. This means that every day and all day she hears the insides of her body, her heart beating, her bowels moving, food digesting, her eye balls moving, her footsteps, her own voice too loud inside her head and her breathing. She also feels out of balance and dizzy like the world is spinning. Due to all this she has become a very different person than the old Pam I used to know. She hides herself away and has become a recluse, seeking refuge in the house. Having a social life is now too distressing for her as she cannot stand to even talk. Her own voice is like a broken kazoo inside her left ear and the sound is so loud she finds it too painful to even speak. Sadly, Pam had a failed surgery in the UK which actually made her symptoms much WORSE.
There is no real knowledge of this condition in the UK, few procedures have been performed by a couple of surgeons who are restricted to a single procedure due to cost to the NHS. The procedure Pam had, was performed through a small hole in the mastoid bone behind the ear, which does not allow for very good visualisation of the dehiscence, which is why we believe the surgery failed.
So Pam’s only option to get her life back is brain surgery (craniotomy) with an SSCD expert in USA.
Our family is being torn apart by this condition. Pam’s mental state caused by the debilitating symptoms she experiences 24 /7 is affecting all of our lives. She is a shell of the person she used to be and our children are missing out on having a fully functioning Mother. Pam does her best but there are times when she rages about the symptoms, and other times when she withdraws completely. Some days there are glimpses of the woman I fell in love with; a beautiful vibrant woman and mother but those days are rare.
Please help me get Pam back to the happy fun loving lady she used to be before this horrible condition took over her life and has totally destroyed her. It breaks my heart everyday to see her suffering and our children need their mum back well and happy.
We are asking for $7000 so that we can get Pam all the necessary test from a top SSCD Specialist in USA. After this we will be able to organise a plan and the next step would be the brain surgery she needs.