About My Face!
My AVM journey began in 2002 when I was 19 years old. Prior to this I had no symptoms or indications of what I had growing on my eyelid. It all started when I had a bleed from what I thought was the tear duct on my left eye. I went to hospital only to be discharged shortly afterwards saying that I must have knocked it. I thought nothing of it and carried on with life at university. Over the years I noticed an increased amount of redness in the very corner of my eye which gradually made its way onto my upper lid to which I now know was the development of these damaged vessels. As time went on my eyelid started to become lumpy and this affected the shape of my eye. A trip to the GP in 2005 led to a referral to a consultant ophthalmologist who diagnosed a varices and said he will monitor it before taking any surgical action. I was being monitored for 2 more years until I moved out of the area and the lump on my eyelid continued to grow. By 2008 I was having regular bleeding from the corner of my eye for no apparent reason so I went to see my GP again and was again referred to a consultant ophthalmologist. He sent me for a MRI scan and informed me that I had an overgrowth of blood vessels that he wanted to quaterise to remove them. I went ahead with the surgery still not fully grasping what I had growing inside me! The surgery was a success and for a short while the eye returned to its normal shape although the redness still remained. I moved again to pursue my training to become a nurse.
Within 6 months of having this surgery the lump had grown with a vengeance and the bleeding was now occurring on a regular basis. Before it had just trickled out, now it was pumping out and I could tell it now involved arterial blood flow. Back to the GP and then hospital I went feeling very deflated and self conscious of my appearance with a noticeably different shaped eye. Thankfully in 2009 I finally met a doctor who knew what I had the moment he saw me and that is when I first ever heard of an AVM. He sent me for a cerebral angiogram which confirmed his suspicions. My orbital AVM was being fed by 3 main vessels coming of the ophthalmic artery and required further treatment to remove. He confirmed that the surgery I had most probably caused the accelerated growth and is not the preferred treatment for AVMs as unless the nidus is fully obliterated or removed it will find new vessel paths to grow. I asked what caused my AVM of which he was uncertain. AVM’s most commonly occur from birth however I had no redness until I was 19 which usually present itself earlier. I informed my doctors that when I was 13 I was attacked on public transport where the affected eye was on the receiving end of a high heeled shoe. It is not clear whether my AVM stemmed from this trauma or whether it was already there.
I went on to have 2 embolisations in 2010 and 2011 to block off the feeding vessels supplying my AVM. The first embolisation was initially a success and the lump shrunk. However within a couple of weeks the other feeders had taken over and it returned. The bleeding was now happening on a weekly basis and was starting to take its toll on me. I suffered a retro bulbar haemorrhage during my second embolisation and that marked to end of my treatment journey at this hospital as the neuro radiologist was no longer happy to operate on me. I was lucky to have a good team there who reacted quickly and saved my eye sight performing an emergency procedure to release the pressure building up behind my eye.
I felt like I no longer had any options and that I would have to live with this forever which had a huge impact on my social life and my family. I made excuses to get out of things which involved going out and when I did go out I was constantly panicking about whether my eye was covered with my hair or the hat I was wearing.
Hope came when my surgeon informed me of a team in Birmingham who may be able to help. By this time I had applied to embarrassing bodies in an attempt to find a cure. With their help and the information on the team in Birmingham the next part of my journey had begun. An onyx embolisation was performed and the nidus and surrounding feeding vessels were blocked off with a black substance that turns rock hard on contact with blood. Following this the vessels were removed by a very experienced orbital surgeon at the Birmingham and Midland Eye Centre. After 3 procedures in June 2012 my eye now looks the best it has in a long time. They believe the nidus was successfully removed and although I still have a lot of scarring and redness I am the happiest I have been in a long time. It is hard to tell if my AVM has gone forever and there is a high possibility that it may return but for now I remain hopeful. AVM are highly misunderstood and unpredictable and there is a lack of knowledge and awareness out there at the moment. I openly admit that until this affected me I had no idea what an AVM was. This charity is an eye opener and with time will hopefully be the stepping stone to ensuring AVM suffers get the appropriate treatment options that they deserve.
Although the past ten years have been tough I have met some of the most inspirational people who truly understand what each of us are going through and am thankful for their support and friendship.
You can catch my story on 4od Embarrassing bodies. Series 5 episode 13 (about face).