A mother has revealed she is ‘tortured’ by her unusual condition which means she can hear her own eyeballs move.
Pam Roberts is one of only hundreds of people in the world to be diagnosed with superior semicircular canal dehiscence (SSCD).
She can constantly hear her food digesting, blood pumping, muscles and bones moving, heart beating and even her own breath echoing in her head.
The 49-year-old said she is a ‘shadow of the person’ because of the condition and has now become a recluse because of the extreme dizziness she suffers.
Pam Roberts, 41, is ‘tortured’ due to a rare condition that means she constantly hears the deafening sounds of her stomach digesting and eyeballs moving
The mother-of-three said she is a shadow of the person she used to be due to the diagnosis of superior semicircular canal dehiscence (SSCD)
Ms Roberts had an operation to try and fix her hearing condition, but it didn’t work. She is now trying to raise money for a potentially life-changing operation in the US
Ms Roberts, from Maidstone in Kent, said: ‘Mentally it’s affected me in such a massive way. I withdraw all of the time. I’m just not happy anymore.
‘It’s horrible, a form of torture for me. I feel like running away from it all. I want to curl up in the foetal position it’s so distressing for me.
‘Everyday 24/7 I feel dizzy, off balance. I can hear the insides of my body.. I can hear my eyeballs moving from side to side. I can hear my stomach digesting.
WHAT IS SUPERIOR SEMICIRCULAR CANAL DEHISENCE? (SSCDS)
SSCDS is a very rare medical condition, recently identified, where the thinning or absence of a portion of bone in the inner ear canal causes an imbalance and sensitivity to sound.
Symptoms include dizziness, vertigo, tinnitus and hearing loss.
When parts of the bone slowly dissolve, normally for unknown reasons, it exposes the superior balance canal.
This allows sound to ‘escape’ from the inner ear resulting in hearing loss.
With loud noises, an extreme and sudden sensation of movement (called vertigo) may result for the patient.
Source: California Ear Institute
‘It’s so loud and I always turn around and think people can hear it, but then I realised that nobody can hear my stomach, it’s just me.’
She added: ‘I know exactly when I’ve got an upset stomach because I can hear it in my ears so loudly. It just sounds like drains gurgling. It’s a horrible noise.
‘I hear my breathing like Darth Vader in my nostril. It’s like I have a mouth in my ear.
‘I hear my pulse, my heartbeat, like a dual beat in my ear all the time. It’s like when you have an ultrasound and you hear your baby’s heartbeat.
‘I hear a whooshing noise which I think is my blood in my ear. I hear my voice, and I have to use the other ear for the phone because it’s too distorted otherwise.
‘I can hear my footsteps. I can hear my food.’
Ms Roberts first had symptoms in June 2015 after cracking her head on a ceramic bath when she fainted, creating small holes in her left ear canal.
After the fall, Ms Roberts, who owns a cleaning business, had a year of doctors crediting her symptoms to anxiety.
But eventually a CT scan revealed that the cleaning business owner had SSCD in May 2016.
Ms Roberts fainted and cracked her head on a ceramic bath which created tiny holes in her left ear canal (pictured). The condition normally occurs for unknown reasons
Doctors tried to fill in the tiny holes in her ear canal in an NHS-funded transmastoid operation, but Ms Robert’s symptoms came back four months later – and worse
Ms Roberts, pictured with her children, became a recluse due to extreme dizziness and the constant ‘torture’ of being able to hear the mechanics of her body 24/7
This disorder, first recognised in medical literature in 1998, usually occurs for unknown reasons in older people.
Since its discovery, a paper in the journal frontiers in Neurology said cases have only been reported 600 times as of 2016.
The thinning or disappearance of a bone in the ear canal causes imbalance, sensitivity to sound or hearing loss for the patients.
Doctors tried to fill in the tiny holes in Ms Roberts’ ear canal in an NHS-funded transmastoid operation.
But Ms Roberts was devastated when her symptoms returned louder – and she started to hear her own eyeballs moving from side to side.
She said: ‘They were hoping to plug the hole and resurface [the bones] but obviously it hasn’t gone where it should have gone. It’s slipped and come off.
‘In the process of this I have lost some hearing and I didn’t want to have a risk of that happening again with the same procedure.
‘When I started to get my hearing back it was such a relief, but it did take three or four months to come back.
‘But then all the symptoms started to kick in again and I just thought ‘oh my god, everything has started to come back’.
‘I never heard my eyeballs move before.’
She now credits the condition with robbing her of her happiness and fears that it stops her from being a good mother to her two children, Bethany, six, and Bobbie, two, with partner Martyn Smith.
After a failed corrective operation in the UK, Ms Roberts is now seeking to raise £5,500 for tests to be approved for life-changing brain surgery in the US to help her ‘get her life back’.
If approved for surgery, the procedure is estimated to cost Ms Roberts another £66,600 ($85,000).
Ms Roberts claims to be able to hear the noise of her food digesting, blood pumping, muscles and bones moving, heart beating and even her own breath echoing in her head
Ms Roberts fears her condition will make her a bad mother to her children, Bethany, six, and Bobbie, two – who she cannot go to playgroups with
Ms Roberts is raising £5,500 for tests to be approved for life-changing brain surgery in the US. If approved for surgery, the procedure is estimated to cost Ms Roberts another £66,606 ($85,000), of which the sale of her, and her partner Martyn Smith, would help with
The middle fossa craniotomy, which Ms Roberts would have with SSCD specialists in the US, is not currently funded by the NHS.
Everything from her diet to her social life has been effected by the repetitive noises she can hear.
She said: ‘Even when I eat a hash brown, the crunching is just horrible.
‘I still like my food so I just try and ignore it. If I’m eating soup and things like that then that’s okay, but it’s crunchy foods [that are bad].
‘It’s things like cornflakes and crisps. Pork crackling I can’t do at all. Eating it is like an earthquake in my head.
‘I hear all these noises so I can’t really hear people properly. It’s like [the sound of] a broken kazoo. For that reason I don’t want to socialise. It sounds awful.
Ms Roberts added: ‘I feel really sad because my friends try and invite me to places and I’m always finding excuses to tell them no because it sounds lame all the time. People just don’t get it.
‘It’s made worse in noisier places. When it’s noisier I have to talk louder, and I can hear my voice really much louder in my left ear.
‘I get invited to visit family or friends and I’m thinking it’s so distressing for me. They’re going to have drinks, it’ll be in a noisy place and they’ll be chatting and for me it’s just torture.
‘It’s distressing for me to be in a public place and having to have conversations when all I can hear is my voice really loudly in my left ear.
‘It’s too much for me. It’s affecting my whole life.’
Ms Roberts, who constantly needs background noise to help distract her from the ‘whooshing’ sounds, said her right ear is fine, but is compensating because of the problems in her left ear.
Ms Roberts is ‘terrified’ of the surgery but would rather have it than exist with her life as it is.
Talking of the cost, she said: ‘It’s really scary to think about how we’re going to raise that. Our only asset is our house, and we’ll have to sell up to get my life back.
‘That’s how bad it is. Even if we did that, because we’ve only been in the house for two years we’d only be getting about £40,000.
‘Then we were thinking we would just rent because we need my life back.’
You can donate to Ms Roberts crowdfunding here.