Rachels Chiari Journey so far: Chiari Sisters of the world unite

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!!

Tuesday 3 January 2012

Chiari Sisters of the world unite

These two lovely christmas tree decorations have been sent to me by chiari sufferers in the USA.....the star was sent to me by a lovely woman in Oaklahoma and the angel is from Hawaii!!! Its is fantastic to receive things from other sufferers who know and understand what you are going through! It makes me realise that there are others out there thinking about me (",)