The Ann Conroy Trust has a lit of specialist Neurosurgeons around the country who are affiliated to the charity.

The following is the list:

They practise in different parts of the UK but they all have an interest in the treatment of Syringomyelia and Chiari malformations. They would be happy to accept referrals from general practitioners or other hospital specialists.

Mr Richard Ashpole
Queens Medical Centre
Nottingham

Mr R D E Battersby
Royal Hallamshire Hospital
Sheffield
S10 2JF

Mr Thomas Carroll
Royal Hallamshire Hospital
Sheffield
S10 2JF

Mr Munchi S Choksey
Coventry & Warwickshire University Hospital
Coventry
CV2 2DX

Mr Graham Flint
Queen Elizabeth Hospital
Birmingham
B15 2TH

Mr Carl Hardwidge
Hurstwood Park Neurological Centre
Haywards Heath

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.

Hi all, just a little feedback on my own Syrinx.

I had my first MRI scan on November 5th 2008 where my Syrinx covered C1 to C3, it was fairly fat and was bulging. I had my decompression surgery in April 2009.

I had a further MRI scan in July 2009, and although my Syrinx still covered C1 to C3, it had reduced in mass and was less of a bulge.

I had a further MRI in January 2010 and have just got the results back. My Syrinx is now only as long as C2 and has reduced in mass substantially. It is currently at about 10% of its original size.

For me this is amazing considering most, if not all of my symptoms have been Syringomyelia based.

Yes, I still have issues with nerve tissue damage unfortunately, but at least I know now that my Syrinx is shrinking, and continuing to do so.

Hi All

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Apologies that it has taken me a little time to get round to doing this, but with a new job I have very little opportunity at the moment, so am playing catch up.

There will be another competition announced soon.

I had a physio triage appointment today, which is the first one that I have been offered since Decompression Surgery in April 2009. When I last spoke to a physio I was 6 days post surgery, and they just shrugged their shoulders, literally, when I told them what surgery I had. They didn't know what to recommend for me to do...........was next to useless.

My appointment today was arranged by my previous Neurosurgeon as the end to my treatment with him - he basically wrote me off as he told me he could do no more for me. I have since had a second opinion with another Neurosurgeon and I now have a new course of diagnostic treatment being done to check the progressive symptoms that I am now having as a result of the residual nerve damage from my Syrinx.

I wrote to my Local MP Andy Burnham back in August 2009 to ask for his support with regards to raising the profile of Chiari Malformation and Syringomyelia.

I thought that with him being the Secretary of State for Health and having held positions governing the DWP at some point in his career that he would be the perfect ally.

I was asking him for help with raising awareness and improving proper diagnosis from our GP's or at least recognition of the classic symptoms which is the main issue that we face.

Well, it took a while for him to reply, he must be a busy MP I guess as I got the reply on 16th December 2009.

Before we start you might want to read my original letter to him. Click here

I have already had decompression surgery and was fortunate enough to benefit from the services of a great Neurosurgeon who really did support me 100%. That is right up until my last follow up appointment 4 weeks before his retirement when I went to see him regarding residual symptoms about 6 months post surgery.

Basically I have residual nerve damage resulting from the syrinx in my spine and it has been causing me lots of problems with pain, weak muscles and joints, mobility, dexterity in my hands and chronic fatigue.

My NS just wrote me off with an appointment to see a physio and rehabilitation treatment.

I decided that this was not pro-active enough and decided to go to see my GP with a view to getting a referral to see another Neurosurgeon at a different hospital.

A Syrinx is a cyst type formation of fluid within the spinal column. The condition is refrred to as Syringomyelia and is commonly caused as a result of Chiari Malformation Type 1, but can also form as a result of direct trauma.

A Syrinx can appear at any place within the spinal column, can be of varying sizes or distribution in number.

How a Syrinx forms as a result of Chiari Malformation or at least the biological / anatomical process is not clearly understood. However there are many hypothesis.

What is known from speaking with various sufferers is that there is no corrulation between the size or position of a Syrinx and the symptoms experienced.

I have 5 friends going through Decompression surgery within 5 days of each other. Or at least planned to……. there have been a few hiccups already with not enough beds and emergencies taking priority.

However, I have been party to and thankfully involved in their preparation for readiness as they are active members of the Chiari Forum.

I have already described the journey from symptoms through diagnosis onto treatment then progressing through to recovery and dealing with any residual symptoms amongst the rest of the personal carnage in between as an “emotional roller coaster” well, within that roller coaster, there are also mini “fairground rides” going on.