Rachels Chiari Journey so far: Spoilt

Hi

Hi and welcome to my blog! I am 29 yrs old and have been through a rough few years. I got married in Aug 09 and by Sept 09 I was very ill. I was diagnosed with Chiari Malformation I, Syringomyelia and Hydrocephalus. I had surgery in Sept 09 to relieve the pressure on my brain and to stabilse it, this was called Endoscopic Third Ventriculostomy (ETV). In Feb 2010 I had foramen magnum decompression surgery to remove a section of bone from my skull (craniotomy) and the back part of my c1 vertebrae (laminectomy) to create more space for my cerebrospinal fluid (csf) to flow. Unfortunately for me 4 weeks later I was back in hospital with meningits....I had to have more surgery.....another ETV (which failed straight away) and a ventriculo-peritoneal (VP) shunt inserted. After that I was well and discharged from hospital...but my walking was worsening so I called the specialist nurse who arranged an MRI for me....which showed a massive syrinx (collection of fluid) in my spine....more surgery yet again....so in Aug 10 I had a syringo-subarachnoid shunt inserted into my spine. I spent 9 weeks in hospital (6 1/2 of them in rehab) and have been in a wheelchair learning to walk since then. I hope I don't bore you too often!!

Friday 6 January 2012

Spoilt

I received a package in the post from New York the other day....when i opened it i was surprised to find a lovely care package created by a chiari sister called Barbie (",)

In the package was:

a pen with angel written on it, a purple butterfly keyring, a hairband, a pair of purple aloe vera moisture socks, a purple mitten (one of a pair, another chiari sister has my match), a christmas card and a lovely picture of her dog (our chiari mascot maisie) in her christmas dress (",)

It was a lovely package to receive and i am so thankful for my chiari family around the world (",)