I was diagnosed officially on 20th January 2009 in Salford Royal Hospital in Manchester and I eventually had decompression surgery on 8th April 2009.

I had been through the mill of diagnosis since July 2008 after I had had an incident one morning whilst taking a shower at home. I had had a good dose of "man flu" for a week and had been laid up in bed for the majority of that time. I had started to feel better, so decided that I would take a shower in the morning to freshen myself up before walking my little girl to school.

I reached for the shower head feeling rather dizzy after a severe coughing fit a few seconds earlier, which then brought on a seering headache. One that felt like a pressure wave in my head causing immense pain.

As I reached up, I felt a level of pain in my neck that I had never felt before, then it seemed that my whole world had been turned upside down. It felt as if I had been strapped into a gyroscope and they had let me go. I fell to shower basin, clawing at the walls to try and stay upright, but could not. I lost control of my bladder function and found that I couldn't move. I was dizzy and nauseous, totally disorientated and scared witless.

I managed to get myself sorted out with help from my wife, who then called for a doctor.

This was the start of my Chiari journey. I later realised that this was probably the moment when my Syrinx appeared and my life started to take a turn for the worse.

I was visited by my GP and told that I had pulled a muscle. He prescribed co-codomol and told me to rest. Little did I know that this was to be the first of my mis-diagnosis episodes.

The pain continued for the next week, and i tried all kinds of self help treatments, hot towels around my neck, wheat sacks that you heat up in the micro wave, heat and cold sprays, ice-packs. Nothing helped and the pain killers were next to useless. Even top strength co-codomol didn't seem to work.

I eventually went to see a private physiotherapist who diagnosed a trapped nerve and started treating me for that with manipulation and TENS therapy. All this did was indicate that I had serious muscular problems in my neck, shoulders, back and arms and was not really having any immediate benefit.

I went back to my GP with the symptoms, and he was adamant that I had a pulled muscle. He prescribed stronger pain relief and told me that I should rest and try and take my mind of it. Basically that it was all in my head and that I was being melodramatic.

So after 7 days I went back to see him, and told him that I could no longer stand the pain, which had often left me in tears. I was not sleeping, I felt unwell and always felt tired and exhausted.

Reluctantly he referred me to see an Orthopaedic consultant. The appointment took a further 4 weeks to arrive, where I attended Warrington General Hospital. They later reported that I had a possible protruding disc at C6 to C7 but wanted me to undergo a cervical spine MRI scan to confirm this and that I would have a follow up appointment made.

I had my MRI scan at Warrington on 5th November 2008. My follow up appointment was scheduled for the 23rd December 2008. I was told that my MRI results would be ready within 10 to 14 days. I couldn't wait that long, so I went back to my GP to ask for my MRI results to be sent to him. 2 weeks passed and when i attended the GP appointment I was informed that I had a Syrinx. My GP explained it in layman's terms, and told me that he was referring me to a Neurosurgeon at Hope Hospital in Salford and left me with that little nugget of information.

It took an age to get the appointment through the system and involved me ringing every 2 weeks to get an appointment at Mr Richardson's clinic. This eventually arrived as 20th January 2009.

In the mean time, I attended the orthopaedic appointment in December where the consultant confirmed from the MRI scan, that I indeed had a Syrinx, and that he would have to refer me to a Neurosurgeon. I told him that I already had an appointment and thanked him. I took a photo of the scan myself to show my wife. I didn't realise how fortuitous that that would prove to be.

All of this time I was still in lots of pain, I was losing muscle mass from my shoulders and back, I was permanently exhausted and everything I did took me longer to do and longer to recover from. Even the most simplest of things like walking to school or doing housework. Not to mention scaring myself half to death researching Syringomyelia on the internet.

I attended the first appointment with Mr Richardson in January, where he didn't yet have copies of my MRI scan. This is where the mobile phone photo came in use! He looked at the photo, confirmed that I had a Syrinx, but then told me what was causing it. This was the first time that I had heard those words - Chiari Malformation.

He gave me a prognosis that whilst I was still young, fairly fit, had a young family and was a fairly active person, that I would benefit from early intervention decompression surgery. Well, I had seen the scars on Google and my head started to spin. he told me about the risks involved, but then that if not treated I would probably end up in a wheel chair a few years down the line. I think I decided then and there that I would go for surgery.

He explained a little more, but most of what he was saying was going in one ear and out of the other. He did say that I had time to think about it, that he would set up another appointment for me to ask questions, and that he would set up a date for surgery.

I did more research and found www.chiari.co.uk which is a forum where people just like me join and offer each other support and advice. The best thing to come from the hours that I had spent on google. I found it because I was now searching for Chiari and not just Syringomyelia.

I attended the second appointment armed with lots of direct and informed questions, got my answers and waited for for the surgery date.

My GP had been sent letters all along the way from my other appointments, and was hoping that he had learned something. Ubnfortunately for me, my GP had retired during all of this. A wasted opportunity for my GP's surgery to learn a lesson.

I eventually got a pre-op assessment date and the surgery date for 8th April 2009 at Hope Hospital in Manchester.

This is where this one ends. I think I have waffled enough for the time being. At least I have shown you that the road to diagnosis is a rocky one. Some people have a far more rockier road than I did, and some less so, but the former seems to be the norm unfortunately.

I will post the next saga from the Op until present day at a later time.

I will also be publishing an e-book and a paperback (real book) documenting the whole story. I have left out so much detail, so much humour and so much anguish from my story, not to bore you with right now but to publish at a later date to help fund my attempt to raise awareness of this awful condition and to help future sufferers have an easier journey than most do now.

Thank you so much for reading, and hopefully you will also add your own stories by submitting them to me by email or by leaving me a message here.

chris@chiariblog.co.uk

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Other links that you may find interesting:

Just reading "Contents Under Pressure" by Raphael D'alonzo
My apartment website in Lanzarote
A Quick "What is Chiari and Syringomyelia?"

Take care

Chris