Nothing worth having comes easy

General Blog
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I have used that quote so many times in my life, but it is so true, and so I have found in terms of treatment for my AVM.
"Nothing worth having comes easy"
September 2014, 8 days after my 29th birthday, I had my first seizure. All I can recollect is my eyes wouldn't stop looking to the right...and then my head in turn kept moving in the same direction, I couldn't stop it. I felt flushed and wanted to tell someone I didn't feel right...Next thing I remember is being on the floor with a paramedic infront of me, and my best friend and boyfriend next to me. I didn't know where I was, everything was a blur, and I couldn't talk very well. Taken into the ambulance I felt so sleepy but the paramedics were so good with me, I can't not praise them for helping me. Being transferred onto a hospital bed and lying in the hallway was...how should i put it...calming, restful. Odd words to say but I could just lie back and recover. In like a whirlwind comes in my best friend, bless her heart, trying not to cry. She had managed to call my parents who then were en route from Leeds, doing what parents do and coming to rescue their baby girl.
I was taken in for a CT Scan to assess the possible reason for the seizure, but learned this was to be taken on for further analysis. After a few hours I was given the all clear to go home where I was not allowed to do anything for a while until I felt capable. Of course me being the stubborn and independent person I am, couldn't let everyone do everything for me and I was soon up and doing some more things on my own. The bruises on my face and arms started to develop and made me cringe as a constant reminder for the episode I had just been through, and the pain and hurt I had put my family and friends through as well. I felt so guilty for something I couldn't control. I still do.
A month later I met with my consultant who confirmed it was an AVM on the left side of my brain, at which point I was prescribed epilepsy/ seizure medication that I will be on for the foreseeable future. 6 months of not driving was so frustrating. Losing my independence, not having the freedom to go anywhere when I wanted... Once the time was up I was so much happier to be driving again and glad not to be chauffeured around any more relying on family to take me places!
An MRI and EEG scan later I then had an angiogram to establish the full diagnosis of the AVM. Not comfortable and involved a looooooot of waiting around.
A year on since the rupture I have my first consultation regarding gamma knife radiation treatment in a couple of weeks, with prospective treatment to be complete anything up to 18 weeks from the consultation. I've had a rough couple of weeks recently trying to take in that I could have a haemorrhage at any time, I just don't know how to deal with this. The thought that this could happen and my life be destroyed is heart-wrenching and scary but I'm trying my best to deal with it. I've learned to take each day as it comes and do the things I want to do. No holding back now, time to enjoy life.

I have the support and love of my family and friends. My work is very supportive also which is appreciated.

This is the first time I've written about it, I know it's a lot of words!

Hannah
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Hi Hannah, Thanks for sharing your story with us all, As you said nothing worth having comes easy but I bet you feel stronger now ?, It sometimes takes these types of events to "wake us up" and for us to start noticing the little things and only worrying about things that really matter :) , I remember my seizure and what it felt like just before it happened and that was scary !, It was like I lost time for a second or so but the worst thing about that was that I was in the car trying to park at the hospital as my wife was pregnant at the time. I just knew I had to get the car parked and get out of the car as something just dint feel right !, And about a minute later I fell down walking up the hill to the maternity ward and it was a passing by ambulance that seen me and helped me :) , Right place I suppose !. I was ok and could answer most of the question they had except what age I was !. MRI & EEG was both clear !, WOOHOO , little did I know that this was the AVM that just wasn't found on the scans !. Anyway I just wanted to thank you for sharing :) , Take care.

Martin

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Thanks for your reply Martin. I had my consultation yesterday and have signed my consent to undertake gamma knife treatment, which should hopefully be in the next couple of months. I now know my AVM is about 1 inch long and 1/2 an inch wide. Seeing examples of stages of treatment for AVMs via gamma knife was helpful as I could see how the treatment worked and reduced the AVM over a period of time. My consultant advised that I have an 80-90% chance of the AVM clearing on the first bout of treatment which to me sounds pretty good.