Rachels Chiari Journey so far: Where I am up to at the minute.....

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!!

Monday 13 June 2011

Where I am up to at the minute.....

Where am I now with regards my recovery?

I have been seeing a physiotherapist twice a week since november 2010.....back in november all we worked on was strengthening my leg muscles, no work on my feet at all as I was unable to stand up unaided.....

When I began to walk, I used what is called a "gutter frame" and most of my weight was put through my arms...god did my elbows hurt!.....I then progressed to a "zimmer frame" which put a little less strain on my arms.....around jan 11 I progressed onto using "crutches" when I walked.....we then concentrated on my walking and building my stamina....I use the exercise bike in the physio gym and can now do 7km in 15mins!!

That brings us up to date....I have recently been given a pair of "fischer sticks" to walk with...they are not as steady as a set of crutches so they are a little hard to use at the minute....but i'm learning!!

I also have an OT who visits me weekly...and our main aim is for me to gain independence around the home! Today we did a lot of walking with my sticks to try and help me get used to using them around here! At the minute when I am alone I use the zimmer frame as it is more steady and I can carry things while I'm using it......

At the minute, I feel a lot steadier than I have done! And feel like I might soon be able to use the crutches/sticks when I am on my own....its all down to self belief and confidence in myself!!