Steve Ansell

Hello, my name is Steve Ansell and I have undergone a decompression for ACM last October 23rd 2008. My story (after consulting the Neuro Surgeon), seems to have started back on 7th January 1958, my birthday. My mum decided to have a home birth as was the norm in those days, and she didn't get an easy run either especially as I was her first born. She went into a 36 hour long labour and then after I was out she haemorrhaged and had to be tended to by the midwife. Some early age illnesses were never properly diagnosed, like aches and pains, and in my teens I suffered quite badly with debilitating migraines, on average one or two a week migraines week. These didn't really subside until I was well into my 20's, but even then I still had the odd one or two. I felt they were being caused by Cheese and Chocolate, so since I was aged 14 I have avoided the two of them.

I had cameras put down to see what was wrong with my stomach due to acid reflux etc, but yet again nothing was really found and it was put down to the fact that at that time I was a heavy smoker. I underwent an operation for a Morton's Neuroma, a small lump that grows on the nerve in the sole of the feet between two toes, it feels like a bad case of cramp when it happens to hurt, but again nothing was found once they got inside.

In 1990 I had a double laminectomy of the lower discs in my back and felt great afterwards, but never 100%. Then in 2004 after visits to physiotherapists etc, I had a scan at Lincoln Hospital for a prolapsed disc in my neck, they found one, but it was on the opposite side to which the pain ran down my body, tingling left hand that sometimes felt to me like a 'claw', and a numb tingling feeling that ran from the top of my head, down my left arm and leg if I sneezed or strained my neck muscles at any time. I was constantly choking on fresh air and would quite regularly cough and end up with a pea of something like that from my dinner some 1-2 hours earlier!

The Consultant I was seeing for my neck told me they could not find any reason why I should get these symptoms, and then he said, "We found that you have a herniated hindbrain on the scan". Of course I wanted to know more about this but he just said "Don't worry, you wont die from it".

Of course I did nothing about it, yeah right! First thing I did was search on Google to see what it was, and up came all this information! What a revelation it was to me, I was reading so much from people who had suffered the same things as I had done and it all started to fall into place for me.

I took some printed pages to my Doctors to show him, and he looked at it and said "No, this only affects children, look" and he showed me the outline of a Childs head they had used to illustrate what a hindbrain hernia was! Needless to say I asked to see another Doctor after that and found myself on the long road to where I am now.

From that moment on I had a four year battle with various Doctors and Consultants and Neurologists before eventually ending up in the Neuro Surgeon Mr.Battersby's office in The Royal Hallamshire Hospital Sheffield.

There he showed me what the others didn't find. I did have a Chiari Malformation, and along with this I had a retroflexed Odontoid (C2).There were meetings to discuss how to proceed with surgery and if in fact I would benefit from having it anyway. But in 2008 it became worse and so they took the decision that I was to have the Decompression operation at the back of the head to take the pressure off the hindbrain and allow better CSF flow to the brain.

Of course I was worried about having the operation, but read up on it and even watched a live broadcast of the procedure on the internet, sounds crazy I know, but to be honest it really helped me to see what was in store and I started to think more positively about having it done. And I thought at the time, if a 7 year old boy can do it so can I at 50!

The operation was a success and surprisingly I found myself back on the normal ward within 24 hours of it being done! What a relief it was when I realised the numb hand was gone, the constant unabating headache (apart from the operation site) had gone. It was weird also, but the Tinitus had lowered, but then I found on the second day I experienced excruciating noise levels in the morning, there was a nurse somewhere on the corridor who kept dropping something metallic, and it sounded like she was dropping it inside my head! I can not describe the level of noise that I was hearing, it was as though someone had turned the volume control up from number 2 to number 10!

This lasted a few days but eventually it did subside back to normal or just above. I was 'released' home after 6 days and although I was still a bit frail and weak, I welcomed the quiet of my own house. My partner Rose was a real Florence Nightingale, and she looked after me very well, I was also lucky to have my Mum there to help when Rose was at work.

Towards the end of the first week at home, I started to get headaches and on a couple of occasions was retching but couldn't be sick. Headaches returned like never before and I was constantly dizzy when I turned over in bed etc. My local GP called but said he was not really knowledgeable about ACM and so they sent for an ambulance to take me back to Sheffield. It appeared that as I had not been drinking or having much in the way of fluids, I had become dehydrated and my brain had shrunk, slipping back into the new space at the back of my skull and it tore two blood vessels at the front of my brain resulting in two small bleeds behind my forehead.

I was put in a ward bed and they raised my feet above my head and pumped me full of saline in the first instance. It was not a comfortable position to try and drink in, but after three days I was feeling much better again apart from the dizzy feeling of being inside a giant tumble dryer every time I rolled over in bed. I was home again in ten days, and made sure I drank plenty. Even now if I don't have enough to drink I get the dizzy spells as a warning I guess.

The operation was on 23rd October 08 and I returned to work short hours on 12th Jan 09 going to full time on the 26th Jan as the HGV driver at the building suppliers in Louth, Lincolnshire.

I have never looked back since the operation, and nowadays I feel more confident, relaxed, healthier, more outgoing.

Its hard to say why, perhaps it was the effects of the Chiari that made me more reserved and 'dependant' on others, but I am so grateful for this opportunity to be how I was supposed to be for all those years before I found out about, my companion since childbirth, Arnold Chiari. It has been a pleasure to part company (as far as I can), from him.

I am still not sure if my child hood and teen year illnesses were as a direct result of the Chiari, but I guess we will never know for sure. I hope this account will go someway towards helping others who may be in the same position as I was last year with the operation looming up on me.