Cavernoma

cav

In March 2014, I was working full time, studying, and planning a wedding. I became increasingly stressed. I was at work (at a hospital) and had a CT of my brain. They told me that I had a growth in my brain. I was not surprised as I already had double vision, left sided weakness, and, freakedly, a numb tongue.

From March to May 2014 I had three bleeds from this brainstem Cavernoma, and it grew to 24mm. Brainstem surgery is incredibly dangerous as the brain stem controls your heart beat, swallowing, breathing etc. Even though this was the case, the consultant had already been planning for me and organised the tools to do my surgery. The operation had to be performed with me sitting up!

I know it scared the hell out of everyone but we got through it. Surgery immediately got rid of my numb hand and foot. Unfortunately I had to go on steroids in hospital and gained a phenomenal amount of weight. All in all I had close to eight surgeries as I also got two bouts of meningitis in hospital. I was so paranoid (anesthesia made me loopy,) I ended up pulling out two PICC lines. Yes, that’s right the line that goes near your heart. I also escaped one night and had to be fitted with security bracelets. My apologies to all the people that I affected!

The drains just didn’t work in my head for my hydrocephalus, so my final surgery in July, 2014 was to put a VP shunt in my head. It has been hard to get used to, especially since the hose goes from my head to my belly, but I’m getting used to it.

I was in hospital till late August 2014 as I also had to have rehabilitation. I saw an occupational therapist, speech therapist, and physio therapist. They moved mountains to teach me how to walk, talk, and eat again.

In December 2014 I had a follow up MRI, I do unfortunately have the cavernoma still, just slightly smaller. I have gotten so much better and been discharged from my therapies. I am currently researching avenues to take to volunteer, until I am okay to begin work again. I really credit my friends and family for their support which has kept me going. My brave persona is only because of them. I had to cancel my wedding due to this horrible condition but am planning my wedding for December, 2015.

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