This Story is different to 'my story' in two ways:-

1) I was very unwell before the surgery and had researched the illness and the treatment

2) The decompression op has been a success.

 

I was first diagnosed with a Chiari Malformation, by chance, in April '08 and again, but with effect, in October '08. I had been experiencing increasingly severe and frequent spells of pain in my neck and mid-back. I had been complaining of weakness, pins-and-needles and pain in my hands and arms. My fine motor control had become poorer and as a result I had a series of nasty accidents to my hands, I managed to sever a nerve in my hand through clumsiness. I was constantly tired and finding it harder and harder to work. I had a back x-rays and courses of physiotherapy, but it seemed that none of the medical specialists, neurosurgeons, osteopaths or physiotherapists could offer me any help. Eventually, as no relevant treatment was available I was referred in March '08 to a Pain Management Consultant; the plan being to at least manage the pain if nothing else could be done. She decided to do a course of cortisone injections into the facet joints of my vertebrae, staring with C1 and C2 in my neck (This, of course, was exactly at the site of my herniated Cerebellar tonsils, although as I had not had an MRI scan at that stage, no-one knew) The resulting pain and headache was indescribable! CT and MRI scans, lumber punctures and even an angiogram showed up no obvious problems with hemorrhaging or the like, but the Arnold Chiari Malformation was spotted. And discounted. By the Neurosurgery team.

 

By September 08, I was still very ill, unable to work at all and experiencing severe and constant headaches. My symptoms had increased in severity and I was on a cocktail of neuropathic painkillers, paracetamol and codeine. The Consultant Pain specialist decided to look further into the issue of the Chiari and referred me to Mr Tim Piggot, Neurosurgeon at The Walton Centre in Liverpool. I first saw him in October 08 and a full back and head MRI scan confirmed the diagnosis of Chiari and luckily with no Syringomyelia. It became clear straight away that the Chiari was the cause of my health problems including the funny headaches I had been experiencing since my childhood and which I previously had believed were migraines. I had read up as much as possible and knew all the pro's and con's of surgery so that when the option of surgery was discussed, I made an immediate decision to go ahead with the op. Surgery seemed like a no-brainer ('scuse the pun)considering the poor state of my health and indeed my poor quality of life.

In January '09, I was admitted for decompression surgery.

The surgery took place early Thursday morning and I was discharged home the following Thursday.  Okay, I had a couple of CSF leaks from the wound and a dose of aseptic meningitis, but on the whole I was fine as long as I took plenty of painkillers and anti-sickness pills. I had been warned I would feel very sick after surgery as the cerebellum is the body's nausea-control headquarters. I think until you have experienced this type of vomiting, you do not know the meaning of the word 'sick'!

By 8 weeks post-op I was declared a success story. The typical Chiari headaches had gone, I had stopped vomiting, and my arms and hands seemed to be functioning as normal. I had pain in my neck from the wound and was still experiencing frequent headaches, but rarely of the typical Chiari type.

I know I still have a long way to go before I can say I am fully well. It is major surgery and one can't expect to feel better within a few weeks - although I do believe some people do! I, however, was told 12 months to full fitness. At 3 months post-op I am still a bit weak and wobbly but I have managed to reduce the type and frequency of painkillers and can manage more each week.