In 1998 when I was 22, I started getting daily headaches & dizzyness with blacking out from time to time, along with jumping eyes & cordination problems. I eventually went to my GP who thought that I was making up the symptoms to get out of work but said that he would put me in for an MRI. The problems continued but my GP still didn't offer any help as I was on the waiting list for an MRI.

It was then 18 months later that I was given a scan at the Oldchurch Hospital in Romford, Essex. After I had the scan done, the results showed that there was some fluid around the brain area, but according to my specalist, the findings wouldn't have any clinical impact on my health and that I was able to return to work fulltime.

It was in Aug 2001 that I decided that enough was enough and that if I wanted to find answers, even if it meant leaving my local area and so I moved to Norwich.

When I arrived in Norwich I was refused housing despite being on the waiting list and ended up spending 3 weeks in a homeless shelter with drunks and heroin addicts. Once I was finally housed, I was allocated a neuroglist.

After a series of tests & scans, I was diagnosed as having Arnold Chiari Malformation type 1 and was refered to a specalist at Addenbrookes Hospital in Cambridge who was surprised that I was able to walk because of what he had seen on my MRI.

After a couple of consultations, it was agreed that I should have a Ommaya Reservoir placed to test the level of the hydrocephalus which was caused by the Chiari. It was at the end of 2003 that I had this device fitted.

After having more tests done, my specalist said that because of the depth of the hernination & the enlarged vessels causing lack of neuro activity, that surgey wouldn't do anything to help the majority of my symptoms, but said that he would put me in for a second opinion.

Near the end of 2004, I got a letter from the Queen Elizabeth in Birmingham with an appoitment to see a specalist in 2005. Once I had seen the specalist he agreed to surgery and suggested a placement of a VP Shunt to treat the hydrocephalus. It was in June 2006 that I had the shunt placed in the same spot that the Ommaya Reservoir was in.

Now 3 years later, sadly there is no change to my condition and I am still getting the same problems as I did in 1998. I have recently started experiencing intense tingling throughout my left arm and am now due to see another specalist at the end of July 09.

The main thing that I am surprised about is that I hadn't been given any follow-ups at the QEH, since having the shunt placed.

As I have been told by 2 different surgeons that decompression wouldn't help me at all, I am unsure what the next step is going to be.

Hope you are having a pain free day

John

As an update John recently attended another appointment in relation to his symptoms.

For the last 8 weeks I have been feeling a tingling sensation in my left arm all the time so thought that it would be an idea to get it checked out incase it was related to the Chiari. My Neurogilist suggested that I should go for some nerve conduction studies & an EMG test.

EMG TEST PROCEDURE

Most patients will need nerve conduction studies which involve using small electric pulses to stimulate the nerves in the arms and / or the legs.

Some patients will need electromyography which involves putting a very fine electrode needle into the muscles ro look for signs of a disorder of the muscles or their nerve supply. No shocks are given through the needles, only readings are taken.

The test I had done lasted for about 20 minutes and was quite uncomftable as the electronic pulses to stimulate the nerves felt like I had bashed my funny bone a few times & had left a vibration feeling in my arm after the test had finished.

The emg itself was quite painful as they had to put the needle into th. e muscle of the arm & then I had to move my arm about with the needle in the muscle. The test wasn't scary as such because of previous tests that had been done.

After the test had finished, the specalist who done the tests said that he will be dropping my neurogilist a line with the results & also perhaps organise a brain / spine check for the other end of the nerves.

I think that these tests are a good idea but they are unable to check the brain ends of the nerves which could be classed as an issue as Chiari sufferers have problems from the brain end of the nerves, but is useful to know if damage to the nerves has spread throughout the different areas of the body.