NeuroTalk Support Groups - Arnold chiari 1 with syringomyelia

I was diagnosed with chiari 1 in August 2012 some what by accident I was told they thought I had carpel tunnel syndrome MRI results showed a herniation, slight curvation of spine, degenerative changes to the spine. So after 6 years of hell being told I'm imagining my symptoms they found something.

First thoughts were relief that I'm not a psycho second came the fear that I could die at just 26.

In November 12 My neurosurgeon sent me for a full body MRI plus to see a neurologist as they suspected MS as an underlying condition. My thoughts god I don't half do it in style.

I met the neurologist where I was told actually my chiari could be depression (fool) and that physio and manual manipulation of the neck would cure all. I walked away some what irritated and willing to walk away I refused physio (lucky I did)

Returned to see surgeon expecting just regular check ups to be told they found a cyst in my spinal cord should it expand I would be paralysed. They have now suggested decompression surgery to relieve the pressure and removal of the c1 vertebrae to allow more space for my brain.

I should be having surgery in August this year hopefully this will work if not I will be left no choice but to have a shunt fitted.

The symptoms I can live with just about I can't cook anymore because I can't control when my hands let go of things and continually burning myself without realising. The spasms are helped with medication the headaches vary but the ones that are caused by the pressure building up are unbearable more recently my symptoms have worsened but I suppose by understanding I was born with this makes accepting it a little easier.

The worst part of all this is having to tell my 8 year old what to do if mummy falls over and can't get up. But that's life now adjustments and sacrifices have to be made so that hopefully I will see my beautiful boys grow into men.

I'm not nervous about my surgery I'm more nervous that it will fail. I've accepted my fate I know what will be will be and if its my time to go then its my time I will fight to see the future I want to see but I'm realistic in my expectations of life and I'm happy to sit back and watch the world go by as long as I'm watching my boys laugh smile and love their life.

Good luck to anyone out there going through what I am I wish you all the very best of luck :)