What is IIH? | East Anglian Daily Times

They’re annoying aren’t they? Those leaflets that slip through the letterbox. The endless email reminders to ‘book your eye test’. 

But, as Ipswich-based sports massage therapist Kerry Wheeler (team therapist for the Ipswich Witches) knows only too well, ignoring them could be at your peril. 

If she hadn’t scheduled an appointment for a second opinion a decade ago, Kerry says she would very likely have lost her sight. 

Then in her early 30s, Kerry says she had no health complaints she could think of, other than having been ‘headachy’ since childhood, according to her mum. 

Working for the police force at Custom House in Felixstowe, she spent her time flitting between Ipswich and the coast, until one day she noticed something wasn’t quite right. 

“I was working up on the third floor of the building. One day I went up, walked into the office and noticed my eyes were a bit odd. Nothing I could pinpoint particularly. The only way I could describe the start of the symptoms was that when I looked at a bright light and looked away, I still got that brightness and couldn’t see properly.” 

Kerry Wheeler of Keep Well

Kerry Wheeler of Keep Well

– Credit: Contributed

A ‘keep calm and carry on’ person by nature, Kerry got on with life as usual. A routine eye test showed her eye sight was fine. 

But, underneath, she suspected something was awry. She visited her GP. “It was a difficult one, I suppose, from his perspective, because all I could say was ‘something’s not right with my eyes’. He asked if I’d been to an optician. I had. So he suggested a second opinion.” 

None the wiser, Kerry booked an appointment at what was the old Co-operative opticians in Ipswich and was told there is a condition that affects women of child-bearing age. She was 32. 

“She [the optician] took a picture of my eyes and didn’t really say any more, other than she was sending it off to the eye clinic at the hospital.” 

Swiftly Ipswich Hospital were in touch, and before Kerry knew it she was being scanned and tested left right and centre.  

A lumber puncture, testing the pressure of her cerebral spinal fluid, revealed her ICP (intercranial pressure) to be over 40. In a healthy adult the range is usually between six to 25 cmH20. “The massive build-up of cerebral spinal fluid was putting pressure on my brain causing my optic discs to swell!” 

Kerry was diagnosed with Idiopathic Intercranial Hypertension – something rarely diagnosed at the time.  

Treatment involved multiple outpatient visits to drain the fluid via lumber punctures which was like, she says, sticking a plaster over an open wound.  

“The first time I had it done it was like someone had cleaned the windows. I hadn’t realised my vision, while it appeared clear, was actually like looking through frosted glass.” 

Time and time again Kerry would return to hospital. And the drugs she’d hoped would help her manage the condition, barely touched the sides. 

Eventually she was no longer safe to drive, which, Kerry admits, was one of the worst things that could have happened. 

“It meant I lost my independence. Going to and from work. Going food shopping, because I live on my own. I got a bike in the end, which was great, but I really missed driving.” 

Kerry’s family, friends and colleagues rallied round, driving her to the shops, and from the station to the office, where she continued to work, despite her ever-worsening symptoms. 

“I went downhill quite quickly. Ipswich [Hospital] said they weren’t able to go any further with me, so referred me to Addenbrookes in the November, to the wonderful Professor Pickard, who’s now retired. He said ‘if we don’t operate, you’re going to lose your eyesight’.” 

Kerry puts it lightly saying this was “a bit of a shock”. 

She was referred on to neuroradiologist Dr Nick Higgins for further testing. 

“He identified there was a narrowing in the veins in my head. It’s like when you pinch a hose and the water pressure builds up.” 

Rather than taking the typical route with shunts, the decision was made to insert stents, similar to those used in heart operations, in Kerry’s brain – the first implanted on December 22, two days before Christmas. 

“Now my brain looks like a worm farm if you cross-sectioned it,” she laughs. 

“When I say I’ve had three or four brain surgeries and more ‘brain pokes’ as we call them, it all sounds really dramatic, but they go in through the jugular vein. When I was having tests, they would go in through my groin and I’d be awake for those…that was, er…fun! I became obsessed with not sneezing during the procedure. Can you imagine?” 

Kerry had multiple stents fitted through the course of the year, each one making her a little bit better. A final stent for the centre of her brain was discussed, but didn’t happen. 

“We agreed the benefits of doing it weren’t enough to outweigh the stress of going through the surgery. 

“I wasn’t off work a huge amount of time,” says Kerry, “but each time I would go back on reduced hours and build them up again. Alongside my eyesight I also had massive fatigue. At my worst I was sleeping 14 to 15 hours a day. It got to the point where more surgery wasn’t worth it.” 

Today, Kerry lives with IIH, but has remained (touch wood) symptomless, going on to launch her own business. 

“I’d rather try something and have it fail than think ‘what if I’d done this or done that?’. After all this happened I realised how valuable my eyesight was, how much of the world I wanted to see, and how much there was to do. It almost made me realise I needed to live my life a little bit. Like a kick up the bum. It definitely made me more likely to try things.” 

Including climbing Ben Nevis in the dark for the Alzheimer’s Society, cycling London to Paris for the British Legion, and taking part in triathlons. 

Her move away from the police was, she says, organic. While she was out of action, she began selling cosmetics for Virgin V, and found she was regularly asked by customers for facials and massages. 

Kerry Wheeler of Keep Well

Kerry Wheeler of Keep Well

– Credit: Contributed

“I got so fed up with people asking, I went on a Swedish massage course – and I really loved it. From there I decided to do a sports massage course and it snowballed from there. 

“It wasn’t that I fell out of love with the police, but I had this other thing happening as well and found I was turning down opportunities on both sides of my work life.” 

A conversation with her mum led to the realisation that, yes, maybe she could branch out on her own. Kerry applied for a five-year sabbatical from Suffolk Police. And it was awarded. 

She began working out of a spare room at home, building a clinic in her garden, and running sessions via Hadleigh Physio. Today Kerry has her own Keep Well studio at a gym in Needham Market where she offers Pilates, massage therapy and NLP – a talking therapy that helped her get through her illness when she was at her lowest. 

“I have people lying on the couch for 30 or 45 minutes and my words can have a massive impact on my clients – they’re a powerful way to help, that’s why I did the practitioners’ course. 

“The mind and body affect each other so much and it’s just another thing I can do to help clients feel better.” 

Ten years down the line from surgery, how does Kerry feel? “Well, I don’t have any issues with blind spots! I do need glasses, but that’s because I’m getting older,” she chuckles. “And yes, I get headaches…but everyone gets headaches. 

“I definitely recommend everyone gets regular eye checks. I know the NHS is under so much pressure, but if you think something’s wrong, push a bit more and ask for a second opinion. 

“I often say to my clients ‘listen to your body, pay attention to it’. That is so important.” 

What is IIH? 

According to the NHS, Idiopathic Intercranial Hypertension is: “A rare condition affecting about one or two in every 100,000 people, most of them women, but men and children can also be affected. The space around the brain is filled with water like fluid known as cerebrospinal fluid (CSF). IIH is a neurological condition in which there is too much CSF present, which causes pressure around the brain. This causes headaches, swelling of the optic nerves (papillodema) and can result in loss of vision or blindness. 

Symptoms include: Severe headache, loss of field of vision, transient blurred vision, double vision, light sensitivity, and pulsatile tinnitus (a whoosing noise in the ears in time with the pulse). 

If you’re concerned about symptoms speak to your GP. 

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