Optician visit uncovers rare deadly disease

Chantelle with optometrist Jennifer Paterson. Picture: Malcolm McCurrach

Chantelle with optometrist Jennifer Paterson. Picture: Malcolm McCurrach

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WHEN Chantelle Tod visited Specsavers complaining of blurred vision and dull headaches, the worst she expected was a prescription for a pair of glasses.

But within hours of an eye test the 20-year-old from Eliburn had been rushed to hospital for emergency treatment on a life-threatening illness. Swelling behind the eyes led her observant optometrist to diagnose a much more serious ailment – a rare and dangerous condition that causes fluid to build up on the brain as if suffering a head trauma.

Known as idiopathic intercranial hydropathy, if left untreated the illness can cause blindness and, ultimately, fatal seizures. It affects just one in 100,000 people.

A painful year of medical procedures failed to keep the disease at bay, and with just two months to save her sight, doctors plumped for a radical operation that saw a rubber tube inserted into her skull to drain the excess fluid.

When she walked into Specsavers at The Centre, Livingston, last March, Chantelle could never have imagined the ordeal ahead.

“I was getting headaches, and when I moved from a dark room to a light room I couldn’t see,” she said.

“So I went to the ­opticians, and my optic nerve was severely swollen.

“The woman who looked at me said: ‘I think we’re going to have to get you to the Eye Pavilion right away. Are you available to go today?’

“I asked if it could wait until Monday, and she said, ‘No, you need to go today.’ And that made me panic a little.

“At first I thought there wasn’t going to be anything wrong, but once I found out what I had, I was quite worried.”

Chantelle’s foster mother Mandy McDermott spoke of her heartbreak when the diagnosis was first announced.

She said: “I was extremely worried. Chantelle was told that she only had two months of sight if she didn’t get the operation. I feel responsible for her, and that would have been devastating if she had lost her sight.

“She’s had a very hard life, and she’s only 20. For that to affect her now is not very fair.”

Since she was diagnosed more than a year ago, Chantelle has wanted to thank the eagle-eyed optician who saved her sight – if not her life.

But in the blur of a life-changing diagnosis, she never even asked her name.

“The last year has been full of medication and lumbar punctures and check-ups, so I just haven’t had time to go back. I’d thank her if I could, if I knew who she was,” said Chantelle. It’s something I’d never heard about before, and even now I’ve only met one other girl who has it.

“I’m really glad she found it. I never thought it would be anything so serious.”

Yesterday, the Evening News reunited the lucky patient with her optometrist, Jennifer Paterson, so that she can finally express her gratitude.

Speaking about the chance diagnosis, Mrs Paterson said: “This girl came in for a routine eye test, and when you see something like that you want to help someone, and I’m glad the outcome has been positive. There were signs at the back of her eye that indicated there was something wrong. She was referred to the Eye Pavilion the same day.

“It’s very, very rare, that kind of condition. You don’t see that very often. It’s especially rare that you would find it in someone so young. It’s very unusual.

Mrs Paterson said the ­Chantelle’s story should act as a warning to all about the necessity of eye checks.

“It really just shows you what we can detect from an eye test,” she said.

“It’s not just about getting glasses set up, there’s a lot more to it, as Chantelle has obviously found out.

“We have quite sophisticated equipment, including a digital camera that takes photographs of the back of the eye, which obviously helps us greatly with diagnosis and treatment.

“Even if you’ve not got any symptoms, it’s worth getting an eye test.”

Chantelle underwent brain surgery to install a shunt, or drainage tube, linking her head and her abdomen to allow excess fluid to drain away.

The crucial operation in May has left her unable to go dancing or play in the park with her younger siblings, and the tube may have to remain in place for the rest of her life.

She said: “I’ve been back and forth for check-ups, and I’ve been on medication for the last year, and it did start ­helping it at first, but then it just got worse and the medication wasn’t doing anything, because I was already on the highest dose. That’s when I was put forward for the shunt, because the tablets weren’t doing anything.

“They went into my brain, but they went into my stomach as well, and that got infected, so I had to go back into 
hospital and have an IV drip of antibiotics.”

An anxious gathering of family members – including her grandmother, foster mother, aunt, and partner Lee Soaves – held vigil at her hospital bed as she regained consciousness from the delicate operation.

“Because it’s not been long since it was put in, it’s still tender,” she said. “It’s sore to lie on, and when I walk you can hear it clicking, which is annoying. I still get headaches.”

Seemingly relentless bouts of painful treatment and heavy doses of medication have transformed Chantelle’s day to day life.

“There’s things that I would like to do that I’m not sure I can any more,” she said.

“Going out and running about in the park with the kids, I get a sore head really quickly, and get tired really quickly. I don’t know if that will pass as part of the healing process in future.

“It’s affected the way I do things, the headaches most of all. Being able to go to work, get up and around.

“I’ve been quite shocked, but I suppose it has to happen to somebody. At least it was me and not one of my family.”

With her condition ­stabilised, Chantelle has now begun fundraising for Macmillan Cancer Support’s Shave or Style campaign, which has seen members of the public and celebrities shave off their hair to raise money for cancer victims.

Her brain surgery required her to shave off all her hair, so Chantelle insists she wants to show solidarity with cancer patients undergoing chemotherapy – particularly because her and her partner’s families have both lost someone to the disease.

“There have been two deaths from cancer in my family and my partner’s family. I’ve already had my head shaved when I had the brain surgery, so I thought, I’ll just do it again because I know I can cope with my hair being shaved off,” said Chantelle.

Elspeth Atkinson, Scotland director at Macmillan Cancer Support, praised the 20-year-old’s fundraising effort.

“We are extremely grateful that Chantelle is taking such a brave step and shaving her head to raise money for ­Macmillan,” she said.

“Our aim is to make sure no one faces cancer alone and it’s only thanks to the money raised by supporters like ­Chantelle that we can be there for those who need us.

“Hopefully she’ll inspire more people to take part in our new Shave or Style fundraising challenge.”

To donate, visit www.justgiving.com/ShaveOrStyleForMacmillan

paris.gourtsoyanis@edinburghnews.com