Hello
My name is daisy I am 22 years old. I have a chiari malformation.
In 2011 I had a v.p shunt fitted and then a few months later had decompression surgery . This went really well and my symptoms improved.
Last year I had an lp shunt fitted aswel as the one in my head.
I am now experiencing chiari symptoms again. My surgeon has booked an mri scan to see and he also said I may well need further decompression surgery.
I was wondering if anyone had experienced this?
Thanks for taking the time to read this
Hi,
I had decompression surgery in January 2014, and like you I've found it hard to find information and support in the UK!
I wish I could help with your question, but I'm only early on in the journey. It's taken years to finally have a diagnosis and I'm now trying to recover so I can go back to work?!
How did you recover after your first decompression? I'm a very determined person but I'm struggling every day!
I have Chiari malformation and Syringomyelia, the cysts go from the top of my spine to just below my bra strap!
I do have a great surgeon Mr Bukhari who is at Salford Royal Hospital in Manchester.
I wish I could help with your question & I hope you get answers on here.
Good luck, take care,
Kimberlee xxx
Hey, it took me a long time to recover from the operation. I was poorly for a while and then had a stiff neck for weeks. But it does get easier hun. Keep going and stay positive :-).
Take care xxxx
I had my first decompression at 7 and my second at 10 they won't do a third and neither one really worked. Hope yours go ok hun