Rachels Chiari Journey so far: January 2012

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!!

Sunday 22 January 2012

Discharge from physio

Well.....after 14 months of going to physio twice a week, its been dropped to once a week and the word "discharge" has also been mentioned!!! Scared much? I think the idea of being left to my own devices is scaring me more than anything else!!! How will I know if i'm still improving? What if things go wrong? My physio is amazing and she thinks I will continue improving for a long time to come, but I think just the thought of her not monitoring me is quite strange!!

It will be amazing when I am well enough to be discharged as it is one step closer to getting back to work!!!

Friday 6 January 2012

Returning to work

So, it has been almost 2 years since I last worked.....23rd of Feb 2010 to be exact.....yesterday I went to see the Dr to get my latest "fit for work" note......my Dr agreed with me that another 3 months (April) and I might be ready for work!! I will be so happy when I am ready to return to work! It has been one hell of a 2 years!! But there finally seems to be a light at the end of the tunnel!!

Spoilt

I received a package in the post from New York the other day....when i opened it i was surprised to find a lovely care package created by a chiari sister called Barbie (",)

In the package was:

a pen with angel written on it, a purple butterfly keyring, a hairband, a pair of purple aloe vera moisture socks, a purple mitten (one of a pair, another chiari sister has my match), a christmas card and a lovely picture of her dog (our chiari mascot maisie) in her christmas dress (",)

It was a lovely package to receive and i am so thankful for my chiari family around the world (",)

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 (",)