A WOMAN who suffers from a rare condition where her brain herniates outside of her skull is hoping to raise awareness of the charity supporting her.

Rosie Stephenson, who runs Ryedale Dog Rescue, has spent the past two years getting a formal diagnosis for chiari malformation after she began suffering symptoms a few years ago.

Rosie first visited her GP after she began to lose feeling in the right side of her body and was losing her balance, often unable to get out of bed on a morning.

She said: “I was waking up in the morning and it was like looking at a fruit machine, my vision was just going round and round. It makes you think that something could be seriously wrong.”

After visiting her GP, Rosie, 49, was referred to Scarborough Hospital to see a neurologist who sent her for MRI scans. When the results came back she was told the symptoms were very similar to those of someone with multiple sclerosis.

“He said he didn’t know anything about it at all and that I should go and see a specialist so I was sent to York Hospital where the doctor said he saw it all the time and that it didn’t cause any problems,” she said.

“I have had a couple of people who have said there is nothing wrong with me and that it’s all in my head, well yes, it is in my head.

“My doctor at Scarborough told me about the Ann Conroy Trust and that was the saving grace because I phoned their helpline when I had been told that this was a ‘nothing condition’.”

The Ann Conroy Trust, founded in 1980, aims to provide support for people living with chiari malformation and syringomyelia, when cerebrospinal fluid is found inside the spinal cord, and for their families and carers.

After speaking to someone on their helpline, Rosie was directed to the Walton Centre, in Liverpool, and she is now seeing a neurosurgeon from Hull at York Hospital. As well as a loss of feeling and terrible headaches, Rosie can also suffer from extreme dizziness on a daily basis and now takes medication three times a day and has regular MRI scans to manage the condition.

Chiari malformation can be likened to wearing a pair of shoes that are too small for your feet. In the anatomical brain abnormality the lower-most part of the brain becomes squeezed through the large opening at the base of the skull into the top of the spinal cord. There are two types, one of which presents itself in adult life and the other which is seen mostly in children and is associated with the conditions of spina bifida and hydrocephalus.

There is currently no cure for chiari malformation, which is a manageable condition, but an operation may be able to halt or stop the symptoms, but it also comes with the added risk of making symptoms worse.

Rosie said: “I’m lucky that my neurologist is good and that my GP was persistent. You wonder how bad things are going to get, and when someone tells you what you need to do it’s only half as frightening as it was before. I think it’s the unknown that’s the frightening part.

“For me, I keep thinking things will need to get worse, before I put myself through something like the operation as it could make it a lot worse.

“I used to say to my GP if I could just take my head off and put it back on I wouldn’t have this pain in the back of my head.”

Rosie’s symptoms were even showing 20 years ago when she had a problem swallowing, but doctors said they were unable to find anything. Other times Rosie would suffer from bad headaches, but again they went away and she would think little of it. She hopes that from her experiences people will be more aware of the condition and those who are worried will go to their GP and contact the Ann Conroy Trust, who have been running an awareness month throughout June.

She said: “Now they have MRI scans they can pick it up more easily, especially in young children which is good, but there will be older people who have lived their whole lives with these symptoms and they think that everyone else has got them. My GP is learning because of what I have gone through and she might be able to spot it in someone else now.

“To someone having the same symptoms, I would say go to your GP and they and get them to refer you to someone who knows about the condition. It might not be anything but if it is you need support and help as well as from your friends and family. The Ann Conroy Trust has been amazing and I wouldn’t have pursued it at all but it was worrying me so much.”

To find out more, visit annconroytrust.org