Ipswich girl with cyst on brain struggling to get diagnosis

Jenni-lee, left, with her daughter Summa, right, who has a pineal cyst on her brain and many other health conditions.

Jenni-lee, left, with her daughter Summa, right, who has a pineal cyst on her brain and many other health conditions. - Credit: Archant

The mum of a teenager from Ipswich who struggles with a series of significant health problems has spoken of her frustration at an apparent lack of progress in diagnosis.

Summa Clarke, 18, of Whitehouse, has a pineal cyst on her brain measuring 2.4cm, discovered after an MRI scan at Ipswich Hospital aged 13.

She also has a host of different health issues, including chronic fatigue, headaches, loss of hearing, loss of smell, loss of sight which is now almost total, tingling in her fingers and loss of feeling between her waist and knees. She also has autism. 

Her mother, Jenni-lee Clarke, 36, thinks that these symptoms are a result of the cyst. But she says medical professionals have told her there is about a 1% likelihood they are linked.

Jenni-lee said Summa has since been discharged from Ipswich Hospital’s neurology department, and she has sought a second opinion at Bury St Edmunds hospital without success.  

“It's funny how everyone else is asking, does this all stem from the signals in her brain?" she said.

Dr Angela Tillett, Chief Medical Officer at East Suffolk and North Essex NHS Foundation Trust, said: “We are sorry Summa’s family have concerns about the standards of care Summa received. 

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“We looked into issues raised by the family via a local MP last year and the team responded with feedback from the clinical team caring for Summa. 

“If the family has outstanding concerns they would like us to address, we encourage them to get in contact with our dedicated patient advice or complaints teams.” 

Summa likes being around animals, and would like to be able to work with them one day.

Summa likes being around animals, and would like to be able to work with them one day. - Credit: Archant

Summa enjoys being around animals, and has been volunteering at the Dog Squad day-care organisation in Christchurch Park.

Summa enjoys being around animals, and has been volunteering at the Dog Squad day-care organisation in Christchurch Park. - Credit: Jenni-lee Clarke

According to the department of neurosurgery at the University of North Carolina, “The [pineal] cyst is rarely symptomatic; however, when symptoms do occur, they are difficult to attribute specifically to the pineal cyst. 

“Typical symptoms include headache, eye movement problems, vision disruption, and hydrocephalus (fluid backup in the brain).” 

An article published by the British Medical Journal said that symptoms of a pineal cyst, although rare, included headaches not of a typical migraine pattern, intermittent nausea, visual disturbance, gait instability and excessive sleepiness. 

Summa wishes that her health did not limit her so much. 

“I would like to go out by myself and ride my bike, and cook.” 

She would like to work with animals or in conservation. 

“It would be hard travelling and going to new places. Say I wanted to become a vet. I couldn’t do that.” 

Summa has been enjoying volunteering with Dog Squad, a ‘doggy day-care’ organisation in Ipswich offering volunteering opportunities to people with learning disabilities or autism.