Darren has a great blog going, and always researches his posts well when they are fact based and posts from the heart when they are personal experience based.

Have a look over there and say hello!

Doctors Fit Note

Well, after reading the response to the petition, it seems that there is a standard reply doing the rounds. How serious do they take it? .....not at all by the looks of it.

Laura Hickman started up a petition last year and managed to get over 500 signatures, thanks in part to some of you lot that read this blog!!! Thank you! The link to the original petition is http://bit.ly/3J8Vqu.

I just received a reply, as all those that have signed it also have, but I read the reply and felt a little de ja vous..............

I received the exact same reply from my own MP Andy Burnham last year.................... which I did research and found to be full of incorrect comments and lies.

See the response that I sent to him and posted on here for all to see...........

http://chiariblog.co.uk/content/reply-my-letter-my-local-mp-andy-burnham

This was a long time ago, it was wrong then and it still is.................

A good friend of mine Darren aka Zipperhead has done some research on the new sick note and has written a flipping good post about it, how it works and how it affects you.

Great work Darren and keep it up mate!!!

The new Fit Note

Massive changes to the way it works, adding yet more confusion, bureaucracy and red tape to those when least need it....all thanks to to the bludgers and scroungers that spoil it for us all!!!

You might find me a little controversial at times, but after having a bad time with the system over the last few years I am allowed to be a little sceptical and caustic about the subject.

All the same, a great resource to learn more about it.

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

You may remember that I was running a newsletter competition where I was asking people to sign up and be entered into a free draw to win 2 weeks free accommodation at my holiday apartment in Lanzarote?

Well, we have a winner!!!!

I am happy to announce that Laura Pearson is the lucky winner, and hope that she will enjoy the invitation to book 2 weeks with us whenever she can and subject to availability at the time. Laura, you are able to include you and your family in this invitation and look forward to speaking to you soon!!!

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.

Newsletters will be sent out very soon too!

Thank you all

Chris

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