In all the time that I have known about Chiari or Syringomyelia and have been meeting other people with either or both conditions, there is a definite common bond.

Sufferers are often misdiagnosed. Some for only a brief amount of time, but unfortunately some for many months or years.

This can be down to a number of reasons:

1. They have seen their GP who has misidentified the condition for something completely different or just another Neurological condition.
2. GP's do not know enough or anything at all about Chiari or Syringomyelia.
3. There is no reference on the internet for GP's to flag up symptoms and arrive at such a specific condition.
4. The symptoms that Chiari and Syringomyelia are wide spread and have commonalities with other conditions.
5. Not all Chiari sufferers present the same symptoms.
6. Not even Neurologists have a good enough knowledge or experience of the conditions.
7. Because Chiari can present muscular symptoms, then patients are often referred to Orthopedic consultants.
8. Some Neurosurgeons do not have enough knowledge about the condition.

The list is by no means exhaustive and there are further complications when we get involved in the mix.

It is important that Chiari and especially Syringomyelia is diagnosed and treated early. The prognosis is much improved when early intervention is taken with a Syrinx as there is a reduced chance of residual nerve tissue damage.

Some patients are often prescribed all kinds of medication such as Migraine pills, anti-depressants, all kinds of pain killers and Neuro medications. Most of which have been proven to be totally unnecessary.

There is not enough information available or awareness spread throughout the medical community about Chiari Malformation or Syringomyelia.

There are medical practicioners who have heard something about it, but have no experience and are often telling patients that there is nothing to worry about, telling them that their symptoms cannot be linked with Chiari. Basically giving patients the wrong information and which is directly responsible for delaying the correct treatment.

Basically, if you suspect that you have either of these conditions then seek expert help immediately. Push your GP to refer you to a specialist Chiari Consultant or Neurosurgeon. Quite simply, no-one else will help you in the same way.

Information about various experienced Neurosurgeons can be found by visiting the Ann Conroy Trust or by contacting The Walton Centre

Chiari or Syringomyelia doesn't have to involve a bad ending at all. There are many patients who go through treatment and then recover fully enough quite quickly to again their old life back. After all, people can have Chiari and be asymptomatic all of their lives.

It is however important that a correct diagnosis and suitable treatment is obtained as quickly as possible once symptoms present themselves.