Rachels Chiari Journey so far: Pacing yourself......

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 17 June 2011

Pacing yourself......

Well yesterday was physio yet again.....getting up in the morning is easy.....its the moving around thats hard! I just wish I didn't feel so sick in the morning!! And having to get ready so soon after getting up is even harder!! I have to be ready from 8:30am in case the ambulance comes early....

Thankfully they usually come around 9:15am and my appointment isn't till 10:30am so I have a chance to relax and my stomach can settle....

Well thats usually the case.....yesterday I was picked up at 9:30am and we still had 2 more pick ups along the way so I didn't actually get there till just 10:30am so we got going straight away!

We did a lot of balance work yesterday, so I was stood up for a long time which was great! I did a lot of looking left and right over my shoulders which is great as it will come in really handy when I try to get my driving license back!! (",)

Roll on next tues......