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