- About the Conditions
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Newly diagnosed Arnold Chiari sufferer Jill Redpath shares her experience of Chiari Malformtion - and why she has a King Charles Spaniel to thank for finding out about the Trust, as she now sets up a local group in Norfolk. Jill Redpath's experiences of Arnold Chiari, and the attitude of many health professionals towards her symptoms during the process of diagnosis mirror those of many sufferers. She was finally diagnosed with 'something' in September last year after two years of uncertainty - but was only given a name for it much later in Spring this year, when she was routinely 'cc-ed' in on a letter between specialists in which the term 'Arnold Chiari' was used. "It was nice of them to tell me," jokes Jill.
Jill, who lives in Hellesdon, north of Norwich, explains "I had been suffering with a "bad neck" and tinnitus for around three years. I'd had trouble on and off for many years, but it all seemed to start in earnest when I was on holiday in Benidrom with a friend. As soon as the plane landed, as well as the neck trouble getting worse, I was getting hot flushes. My friend said that it was all down to my age - I'm 49 - and that I needed HRT. That did subsequently help, but it didn't seem to explain everything. When I got the hot flushes at night, I also had a sensation of having a form of electric shock down my legs. The only way I can describe it is as the kind of feeling you get when you leave your stomach behind as you go over a hump-backed bridge at high speed."
"My GP wasn't that sympathetic as the symptoms continued to worsen. Because I work in a BT call centre, all he would stress was that I had bad posture and If I chose to work in a call centre, I had to expect it!"
Jill began to spend hundreds of pounds trying to get some kind of relief, and an answer. She continues, "I did the rounds of osteopaths, manipulative therapists and chiropractors, spending a small fortune in the process at the behest of the GP. The only real relief I got was from a reflexologist. But the problems continued to grow. I began to get excruciating pain in my head when I was on the loo. I'd had it before when I had a cold, but assumed everyone felt like that when they got a cold. It was February last year when the head pains started to take off. Until that time I had not suffered a great deal of dizziness. Was it my sinuses? Could it be a trapped nerve, or was it just all in my mind?" were the kinds of questions racing through her mind.
"Between October and February 2004, my job had moved to another area, and my job became more desk bound, writing training materials for other staff. The increased paperwork meant I was leaning over the desk a lot, rather than working on a computer screen. As a result, the neck pain seemed to really take off In the end, I had to take time off sick. BT, my employers have been fantastic throughout. I was off work totally for 10 weeks, for 7 of those weeks I could barely function and any head movement caused pain like I had never felt before (and I have 2 children). It almost seemed to be worse because I was lying down at home."
"It was so bad, I couldn't even put my mascara on! I decided enough was enough, and went to see another GP. He came highly recommended, and got very enthusiastic about identifying my problem - a bit too enthusiastic. He got the textbooks out and was convinced I had a 'benign cranial something'. I was gob-smacked. He got me in to see a neurologist quite quickly and also had a CT scan shortly after which revealed nothing. The radiologist pushed for me to have an MRI, and I then had to wait 3 months for the scan. I was finally told that I did have a problem at the beginning of September 2004, quite what it was, I didn't know. I was never given a name. I got referred to Addenbrooks Hospital and have seen two surgeons there. I only found out it was 'Arnold Chiari' in a letter that I was 'cc-ed' in on some 7 months later!"
Jill found out about the Ann Conroy Trust in a bizarre twist of fate. Jill's daughter Karen works as assistant editor of the monthly pet magazine, 'Dogs Today'. In that job, she was regularly contacted by a reader about how a certain breed of dogs (King Charles Spaniels) suffer with Arnold Chiari and Syringomyelia. Separately, Barbara Winward at the Trust HQ contacted Kate to secure some press coverage in the magazine about the successful 'cat illustrated' Christmas cards to raise funds for the Trust, because of the link with cats helping to raise funds for a condition which humans share with King Charles Spaniels. When Kate's mother finally got 'Arnold Chiari' as the name for the condition earlier this year and told her daughter, bells rang and she was immediately familiar with the condition - and gave her the Trust's contact details. "It was perfect timing," explains Jill.
Jill was a bit cagey about sharing the news with family and friends. She has an adult son (Neil) and adult daughter (Karen). "I didn't exactly tell people at first. It was horrific. I couldn't tell my 78 year old Mother. She's a full-time carer with my Father and had that to deal with. She's a worrier. I didn't tell the kids straight away either. I play it down a bit and don't go into too much detail. I had previous health problems, so only let them know in dribs and drabs. My Mother is now quite knowledgeable about it."
So what does the future hold for Jill. She's waiting to hear the next steps - and whether that will include decompression surgery, from the consultants at Addenbrooks and Norwich Hospitals. She's awaiting the results of another scan, and then possibly an Ommaya Reservoir and CSF infusion studies on the pressure around the brain and spine. "I am still not doing a full day at work, but just couldn't give it up completely. I have adjusted my life totally now and am not suffering to any great extent, as long as I don't bend, get too active - or get constipated! I can cope. Life can be very boring. I have always been very active and used to dance a couple of times a weeks and do yoga, gardening and decorating. All that has had to stop. The thing I miss most is dancing to 'Murder on the Dancefloor' by Sophie Ellis Bextor," complains Jill.
"I do seem to be worst first thing in the morning and last thing at night. I am usually awake between 4:30 and 5:30. Lying down for long periods seems to make me worse. I am better to get up, have a cuppa and a wander round the house and then go back to bed. When the numbness comes on, I just have to keep moving."
Despite not knowing what the future holds, Jill has hooked up with trustee Paul Simpson to launch a local group in Norfolk. In June, the two of them, together with Jill's son and daughter, Paul's sister and brother in- law, two of Jill's best friends - and three dogs undertook a sponsored 10km walk to support BBC presenter Nicky Campbell's 420 mile walk across Ireland. As the newsletter went to press, the two of them had raised over £2,000 to be split between the Ann Conroy Trust and Nicky's charity, the British Association of Adoption and Fostering. As a result of the local press coverage they have generated, they have recruited six new members who otherwise would have continued to suffer in isolation. "It's so good to share experiences with fellow sufferers. If Paul or I have a bad day, it's nice to know that we're each at the other end of the phone, email - or the A47! We're holding the first support group meeting in my front room on a Saturday afternoon - if I get round to clearing it up.