Rachels Chiari Journey so far: Long Time

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 6 December 2011

Long Time

Wow, its been a long time since i've posted!! Well in that time, my wonderful husband, dad and brother raised over £1,500 for the Walton Neuroscience Fund......

In July we went to the south of France for just over 2 weeks....1 week spent in Lourdes where the weather was awful to say the least!! Rain every day!! I looked so special in my wheelchair waterproof!! (",) The second week we spent just outside Bergerac in a converted farm house/barn....it was amazing!! We had our own swimming pool....and the weather was fantastic!!

Since then, I have not used my zimmer frame!! Woo hoo!!! I started with crutches and in around September I graduated to my fischer sticks permanently!! Now at home, I only use 1 stick and occasionally walk unaided!!! That is the best part!! I am still attending physio twice a week at the local hospital, and we are working on me walking unaided!! (",)