Rachels Chiari Journey so far: Sadness.....

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 10 February 2012

Sadness.....

There is just not enough known about Chiari.....no 2 people react to it or the surgery in the same way, and other medical conditions make it more complicated. Research into chiari and chiari with other complications needs to be done so no more people have to suffer unjustly or be lost to this condition! One thing that really bugs me, is when someone says "oh you need to think positive and you'll be fine".....tell that to the family who have just lost a daughter & sister......they never gave up hope and were always looking on the positive side.....positive thinking is a bonus and can help you to feel better mentally.....but if there is too much going wrong inside, no amount of positive thinking is going to make you well again!!