My chairi type 1 story - 4 weeks since I found out.

Half the battle is knowing what you've got. Not knowing causes stress, on top of your other stress. Try to relax as much as possible, easier said than done. They have diagnosed so they can deal with it. It affects different people in different ways as you will read on this site. Relax Iknow its hard but it does help. Good luck to you, hope everything goes well.

As I have said I am disabled now only survived because of my wife and farther, I had a brain hemmorrage which paralysed me down the right , it takes me ages with my left arm now , I caught diabetes as well now and have to take 4 injections a day and blood but that isn't the only thing , I write a story ok - 1st collapsed in asda shopping was taken to hospital 12 hours later on a hospital trolley out cold my feet was turning blue and my farther at the time said if nothing is done right now to the nurse at the time I kill you if anything happens , luckily a male doctor was walking passed and said let me have a look and said I was serious and transferred me to Royal London hospital where they done a ct scan and a brain heammorrage operation , they said you will have to prey that I wake up , which I did three weeks later , I couldn't walk , talk or anything , to cut a long story short it paralysed me , I went through so much ops inc pulse cut out because got infected to radiotherapy to the brain etc etc then collapsing again and finding out I got diabetes , my wife has been through so much at the age of 25 I don't know what I would have done without her and looking after my son who was 1 at that time . So I would say get the operation done as soon as you can because the longer you leave it you could be like me . I am 44 now and everyday is a struggle but thx my wife for everything she had and does do . Anilkumar

Hey Dan

Positivity is always the key to these kinds of situations. I think you have probably been quite fortunate to have had a diagnosis so quickly!

I was diagnosed 7years ago after a battle to be taken seriously with my symptoms. My experience is many CM sufferers spend years hoping to be heard, which of course then adds to the stress of it all.

I did indeed need the op, (not everyone does, so rest assured )which I had 8 months ago, I am recovering really well and am now symptom free.

It sounds like you have support from your doctors caring from you.

Certain things can trigger symptoms to worsen, esp stress, so try, if you can, to relax more.....

Hope I have helped.

Hi Dan, you have got a good support here from yelt and hayley, like they said aat least you have been diagnosed, get the op soon before it get worse, be calm, look after yourself, take it easier, get your neurologist to refer you to the good neurosurgeon who has done lots of chiari surgery talk to organisation such as ann conroy trust read on the web about our condition,,,you have started with this site..so you have doe the right thing.so take it step by step..just accept it our condition and managing it righthly and calmly

Thank you all for the helpful replies so far

Hi Dan, I am also recently diagnosed (december). My where about are you ? and what type of tests have you had so far ?

I would definately recommend you push for a CSF Flow study MRI if you have not already had one as from what I can understand this would indicate if you have any flow restrictions.

This group has been very helpful in answering my many questions and giving great advice