It all started back in may 2007. I was a keen Martial Artist and competed in cage fighting a lot, as well as teaching Street Self Defence.

I was getting bouts of dizziness, and once in a blue moon I would suddenly feel as though I was going to fall over. I was also getting episodes of absences (blanking out). I went to the doctor who told me that I had Vertigo and treated me with drugs for vertigo. He also sent me for a MRI of which the results later vanished.

The drugs did not work and so i carried on as normal.

In 2008 I was still getting the absences and began to forget a lot of things. I was getting electric shocks in my arms and legs, severe headaches, especially when i coughed or sneezed, impotence, frequent urination, fatigue, blurred vision, speckles in my vision, memory loss, biting my tongue for no reason even in my sleep, could not find the right words when talking, problems with concentration, slurred speach the list goes on.

In June 2008 I was made redundant where I worked as a Site Manager in the construction industry. I had to go on Job Seekers Allowance at this time. By the time July came round I was starting to deteriorate. I went back to my GP, who this time told me he was positive that I had Labyrinthitis and so refered me to a Ears Nose and Throat specialist.

I attended my appointment in August 2008. The ENT specialist did some tests and asked about my symptoms. He was amazed that my GP had sent me to him as this was clearly a problem with the Cerabellum and not the ears. He refered me to have another MRI this time at a different hospital and to include a scan of my spine.

In September 2008 my results from the scan came back and my GP told me that they were fine. He refered me to a Neurologist who told me he had not recieved the latest MRI results but did have the ones from 2007 ( strange as i was told they had gone missing ).

He told me that the results came back as showing no problems and because of this he did not need to see the latest ones. I told him of my symptoms and he said I was clearly suffering from depression and refered me to a mental health team, he gave me the copy of the MRI result from 2007 and I left him feeling rejected.

Once i got home I looked at the results and it said that there was a 5mm tonsular ectopia. I had no idea what this meant and so i thought I would google it just for my own peace of mind. I was dumb founded when it came up with Chiari Malformation and the symptoms matched with what iI had been getting.

I looked it up even more and found it was also called Hind Brain Hernia. This shocked me even more as this is what my Mother had over twenty years ago and underwent brain surgery for it by the late Bernard Williams. Her symptoms were just headaches at the time which she suffered for years. This made me even more determined now. Back to my GP Ii went and asked him to refer me to a Neurosurgeon who specialised in this area.

He told me I had not got this and a neurosurgeon would not see me unless i was refered by a neurologist and he clearly diagnosed me with depression. I went away very angry. I looked on the internet myself and came up with a Neurosurgeon in Liverpool. I called him and he said he will see me if my GP refered me and that I needed the images of my latest MRI.

Back again to the GP and told him this and he eventually agreed to refer me with a smug grin on his face and said it will be a waste of time and that the problems were caused as a result of my sporting activities. (MMA Cage fighting)

I got the images and set off for Liverpool the week after, through boredom on my long travel by train I thought I would take a sneaky peak at the referal letter. In it was the results of my latest scan, this time it said there was a 9mm tonsular ectopia and signs of Syringomielia. "Syringo what" I thought. The surgeon told me there was Chiari present and he did not know much about Syringomielia and told me he would be happy to treat me with drugs for the condition as I was not a candidate for surgery.

He told me that there was a Surgeon in Birmingham where i lived who was the leading surgeon for this condition and so refered me back to him. What a waste of £200 that was.

Whilst waiting to see the surgeon in Birmingham I began to suffer drop attacks, where I would just fall to the ground for no reason.

It was now March 2009 and I went to see the Surgeon in Birmingham. He told me that I had two syrinxes and Chiari Malformation. He also told me that it was clear I had it in the 2007 results and also clear that I had Syringomielia in the latest results and that it was obvious that who ever read them had not got a clue how to read them.

He told me I was clearly a candidate for surgery and I was booked in for April 13th 2009 at the Queen Elizabeth Hospital Birmingham. I was to telephone the hospital on that day to make sure I had a bed. I did this at twelve midday as instructed and they told me there were no beds available and that my surgery would be canceled. I was not having this as I had been messed about to much.

I spoke to the Hospital Manager and I recieved a call back saying that a bed had been booked for me and to attend on the 15th April at 8 am for surgery. I was finally wheeled into theatre at 11 am and came round at 5:30 pm after having Posterior Fossa Decompression.

In January 2009 i had to tell benefits that I was now sick and had to change the benefit I was recieving. They put me on Employment and Support Allowance and told me i had to attend work focused interviews even though I was clearly not fit to work.

I had to tell my Mortgage insurance that I was now sick and so began the 90 day waitng period which has put me in arrears with my mortgage. I had to attend a medical assessment in order for me to continue to get ESA. I told them at the assessment what Ii had been diagnosed with and they said they had heard of it but did not know much about it. I told them I could not do things such as bending, walking up and down stairs, sit for long periods of time, problems with speach and so on. The day I came out of hospital the results had came back from the Medical assessment. It said that I had failed the assessment and that my benefits would stop with immediate affect. I telephoned them that day and explained my circumstances and that I would like to have the case reassessed.

After a month they said they would carry on paying me whilst the appeal went through. I attended another medical assessment this month August 2009 to see if i can continue to claim. I managed to get DLA, but that is of the lowest payment. You have to attend the assessment even if you have trouble walking.

I have had complications since my surgery such as breathing issues where I find my self struggling for air sometimes. Weakness in my legs like jelly, vertigo and dizziness are still there, the surgeon did say that this may not go. My speech still gets very slurred especially when i am tired, fatigue is still there and i am now suffering from some type of convulsion in my arms and legs and head when at rest and especially if i am upset in some way.

I have got another appointment to see my surgeon in Sept 2009 to look at my symptoms and the MRI i recieved just before leaving the hospital.

The story continues.

Regards

Darren
ACM, SM
Decompression 14th April 2009
Queen Elizabeth Hospital Birmingham