Over the last nearly 4 years my life has went through so much change, some good, some bad! Chiari has definitely changed my life forever. At first I thought my life had ended but I feel if you embrace change and have a positive mindset thinks can happen for the better. I believe everything happens for a reason! I also believe you’re not given anything you can’t handle!!
I went from working 40 plus hours a week, in charge of loads of staff, completing paperwork and dealing with unhappy customers. Plus running a house and looking after a 3year old.
I then went to being stuck at home alone all day every day, looking out the window. My mobility really poor that I’m falling all the time and in a lot of pain. All I have to do is watch garbage on the TVs and my mind seizes up!!
I thought no I’m changing my mindset, think positive! Change your life! Try and get out of this dark hole!
I looked online and joined the Glasgow Disability Alliance who get people out and enrol people in programs to help them with their self confidence. I’ve met so met people and made friends. I’ve been put on the “future visions program” which is ten weeks of coaching and self help and things for me!
I’m doing distance learning course with Reid Kerr College. I’ve completed 3 already and currently doing introduction to counselling as I want to volunteer in the future and help others like myself.
I’m currently trying to arrange funding to do an Open University degree starting in September.
These are some of the examples of what you can do when you put your mind to it and decide that Chiari is just another condition and you’re not going to let it win. Sometimes people think “oh there’s no point” but there is!! We are only young and we have our lives ahead of us and we need to do something about it. It’s just a matter of finding what interests you and what’s in your area.
If anyone needs any help please drop me a message. Don’t fight alone!!
Love karen x x x
We are nearly at 350 members!! I never thought I’d be helping so many people! When I was going through my chiari journey I had no one and that’s the reason I started this page. I didn’t want anyone to feel alone and scared like I did! I really hope that I continue to help as many people as I possibly can.
Ill just tell remind you of how i got to where I am. I’ve been having headaches since the age of seven but wasn’t diagnosed with chiari malformation until I was seventeen. I continued to suffer with the pain until I had my Daughter Lauren. After my pregnancy I had an MRI, they said my chiari malformation had worsened and I’d developed Syringomyelia. They reckoned they weight of the baby during pregnancy caused this. They said I would require surgery immediately. However I was due to get married in two months time!!!
I got married in August 2013 and had my first decompression surgery in September 2013. The surgery wasn’t successful, I took a reaction to the dura patch they used and developed meningitis and the cerebral tonsils that they shrunk fell back down.
I had weeks of antibiotics. All my veins collapsed and they ended up having to put them in my feet!!
Once the meningitis had gone they tried decompression number two where they amputated my cerebral tonsils. This time they didn’t use a dura patch!
The surgery seemed to have worked and I got home.
When I got home I didn’t seem right. I was home alone. It was New Year’s Eve and I made myself lunch. I walked from the kitchen with my plate and glass and the next thing I collapsed. I woke up in a puddle of blood. The glass and plate had broken and I’d glassed myself in the face. I managed to get myself onto the couch. I think I must have a guardian angel as no one was due over but at that moment my aunt walks through the door!! She starts screaming when she sees all the blood and phones and ambulance. I’m blue lighted back to the hospital and on New Year’s Day I have decompression number three.
After that I’m still not feeling well so they do a Ct scan and they see I have hydrocephalus so now I have to go for further surgery and get a VP shunt.
Due to being bed bound for so long they send me to the physical disability rehabilitation unit to learn to walk again and build up my strength. I eventually get out of hospital on April 2014!!!
The first 8 months of my marriage I was in hospital!!!!
I then had to return for a week a few months later to have a syringal pleural shunt fitted due to my Syringomyelia. When they fitted the shunt I lost the feeling in my left leg from my knee downwards.
I’m hoping my journey helps me help you 💜💜💜
Please don’t be alone because you don’t have to anymore x x
Lots of love karen x x x