My story begins on my 40th birthday; I’d picked up a new car in the morning and had a party with friends and family in the evening. Life was good – I was very happily married with 2 wonderful children, and had a good job (Finance Manager of a paper conversion plant).
Within only a matter of weeks; I’d been in a meeting with my boss, and was in the middle of saying something; I froze and could not remember what I was going to say! I felt like I was in a swimming pool (when noises echo and resound); and everything went in slow motion. After the meeting he said to me “you should get that checked out; I know someone who has petit mal epilepsy, and they have very similar symptoms”.
Soon after I went to see my GP and she suggested that I got an eye test. This showed that I had a portion of my left hand field vision missing. As this could suggest that there is nerve damage; they referred me back to my doctor.
I was then referred for an MRI scan. When I went to see the specialist, to get the results; he said “It’s good news, it’s not a tumour – its and AVM!”. At that moment; my head started swimming and, my heart began to beat; I said “What’s an AVM?”.
He went on to explain to me that It was an ‘Arteriovenous Malformation’, “it’s basically a tangle of veins, that are on the right temporal lobe of your brain; that shouldn’t be there”. He said “there is a risk that one of the veins/arteries could rupture; and if that happened, you would have a bleed and it could be fatal; due to your life expectancy we should do something about it”. He referred me for an angiogram, so that they could take a closer look at it.
When I went back for a review of the angiogram, I was told “It’s too big for surgery, and it’s too big for Gamma Knife Treatment, so we will have to embolise it”, everything he said seemed like a foreign language, and it was terrifying; “It’s a procedure where we inject a glue like substance(onyx) into the AVM to try and block off the blood flow, to prevent bleeding”; “ this involves going to theatre and having a catheter inserted into your groin; so that we can inject the glue into the area; it will have to be done over several courses; it can’t be done in one go; otherwise it can be dangerous”. He added that “Embolisation isn’t a treatment in its own right – so the long term plan will to be remove it with Surgery”.
November 2011 – Was when I went for my 1st Embolisation; when I came round, I was visited by a doctor who told me it had gone really well. He told me that they had blocked off the ‘fistula’ which was the heart of the AVM, and my risk had already been reduced. Of course that really lifted my spirits and gave me great hope. I’ve got to admit that I didn’t think positive at all times, (its human nature to react like that when you been dealt such a massive blow).
Although; the majority of the time I pushed it to the back of my mind and carried on as normal; My boss used to say to me “It’s ok to rant and rave, and say Why me?”, and my family and friends told me how strong I was being. I was still working; despite having to hand my driving licence in (due to the seizures), and all my hospital visits; I think I needed that focus to keep me going.
As time went by I came to realise I’d been having seizures (Vacant episodes) quiet frequently (more than likely weekly at the time) – I’d not thought anything of them and called them my ‘funny do’s’! – it was only my husband that had witnessed them – he told me my eyes dilated/ I looked ‘lost’ and I’d sometimes grind my teeth.
When I thought back I could almost certainly put the onset of them down to childbirth (It can ‘unmask’ it apparently). I have been on a medicine called Lamotragine from being diagnosed – it was at that point I was told I’d have to surrender my licence. The seizures are now under control; they increased my medicine, in small increments, until I reached a point where they’d really slowed – Right now it is 6 months since my last one; which is fantastic.
The following morning after the treatment I was visited by my specialist (followed by an entourage of students – it was a university hospital); he asked me how I was doing? – I said I felt fine, and was quiet bubbly as I repeated what the doctor had said to me. He said “RUBBISH – he shouldn’t have even done it; It turned out he’d been on holiday, and I’d been admitted without his say so); he went on to say that he’d used metal coils, and that should never have happened as it makes the surgical part of the procedure much more difficult”. As you can imagine my head was spinning, and my reaction was ‘panic’; not only did I have the horror of living with an AVM in my head; I now had something else in my head that shouldn’t be there! After a hospital compliant/ investigation it was considered by numerous specialists at the hospital that there was no harm done; but they recommended that the rest of my treatment be done at Oxford (This is definitely a one off- but it’s part of my story!)
Due to this experience I would always advise anyone to get more than one opinion, in particular with AVM’s; as they are so rare (1 in a million); there are many health professionals in my experience that don’t even know what they are! I have also encountered many differences of opinion along the way – this is because there is no definitive treatment/cure for them, as we speak
Jan – July 2012 – I went on to have 3 further embolisations at the John Radcliffe Hospital in Oxford; they all went as expected and I was told that a good portion of it was gone already- the next plan would be to have Gamma Knife treatment at the Royal Hallamshire Hospital in Sheffield.
10th October 2012 – I was on a night out with all my friends and colleagues from work; towards the end of the night I got a bad headache; I ended up being taken home in a taxi. I can remember having a sudden flash of pain down my neck, and I was sick.
By the time I got home; I couldn’t walk, my husband thought I’d had a stroke
I was rushed into Salford university hospital, only to find that I’d had a brain haemorrhage (the thing they’d done 9 procedures on me to that date – to try and prevent!); I was seriously ill in hospital for 2 weeks after that.
A result of the haemorrhage was that I lost my left hand field vision (When I was in hospital I was literally seeing half of things); I was getting very bad headaches, a numb leg, I was very confused, I could hardly string a sentence together and I was extremely tired.
I had another angiogram (5 to date), which they assessed whilst I was still in hospital. I remember saying to the surgeon “I want it out, I want it on the floor so I can stamp on it!” – but they still couldn’t operate, it was too risky; I was therefore referred to The Royal Hallamshire Hospital for Gamma Knife Treatment.
When I was sent home; I was too frightened to stay at home on my own in the day, in case I had another one, but I had to learn to adjust to a totally new life – one where I had the brain injury team, occupational therapists and visual therapists visiting on a regular basis.
I was very frustrated because right up to the bleed, even throughout all the treatment I’d had; I had carried on living my life exactly as I always had. My life was very hectic, full of school runs, work, kid’s clubs, home work, housework, shopping, gym etc. etc. All of a sudden I found myself bed bound hardly able to stand up (it affected my balance), and I was hardly able to string a sentence together.
November 2012 – I went for the Gamma Knife treatment – this was the worst treatment I’ve ever had – it involved having 4 screws put in my head; so I could have a metal frame attached to my head, this was so that my head didn’t move when I was having the treatment. It was vital that the radiation targeted the AVM precisely; because it could have done damage to my brain if it missed. The staff were absolutely brilliant and really kept my spirits up; they even insisted I had this lovely picture taken!
March 2015 I had another routine check-up, Angiogram
November 2015 I had a follow up meeting with my Surgeon – the angio showed that 90% of the AVM has been obliterated. He said that the chance of another bleed (which has been my worry) is small. He showed us ‘before and after’ pictures, and we could definitely see the changes; which means the radiotherapy is definitely working.
The radiotherapy can take up to 4 years to work; so from the last Angio I still had another year and a half for it to carry on working to November 2016. This meeting was very positive; the only positive one I’d had in 5 years! I could finally see a light at the end of the tunnel! He also commented that he thinks there is a good chance that the radiotherapy could get rid of it all; but if not, he is now confident that it could now be removed by surgery.
Present – As the years have gone by; I have slowly got better and better!
My eye sight is much improved; I have no problems with physical activities; my seizures are under control; and I’m fully compos mentis! (most of the time!)
I still suffer from headaches, numbness in my leg and tiredness; but mainly when I’ve done too much – there’s a lesson here!
Unfortunately, I was never able to return to work after the bleed, I was too ill. Over the last year I’ve tried to get back into the work place by doing various volunteer admin/finance roles (only 2 or 3 hours a week); but it didn’t work out; it was making me ill.
I have decided to let that part of my life go (I was striving to get back what I had lost; but I’ve had to accept that it’s now not for me), I want to do something more meaningful with my life that is truly charitable, something to be remembered by!
I’m currently looking into doing some social work with families or old people. I’ve also decided to start Fundraising for a Charity called ‘The Butterfly AVM Charity’ – their aim is:
To raise much needed funds for specific research into peripheral, brain & extremity AVMs (Arteriovenous Malformations) with the aim to improve treatments and find a cure
To raise awareness about AVMs
To support AVM sufferers and their families
To inform AVM sufferers about new treatments and establish a comprehensive list of treatment centres, specialist interventional radiologists, surgeons & doctors
Website/Blog – I have just set up a website email@example.com (It hasn’t been developed yet) which I will use to raise the profile of AVM’s and help for sufferers, I will also keep a blog of our walk and any further events.
I am due another Angiogram in November 2016 – it will be nice to see how far the Gamma Knife treatment has worked – if there’s still as residue, I might need surgery, if it’s all gone – I’m cured! fingers crossed!
I am also due another eye test at the end of 2016 – this will show whether I will be able to drive again – again fingers crossed!
I would like to Thank all my wonderful friends and most of all my amazing family for being there for me always – without you I couldn’t be where I am today.
Thank you for reading my story,