Erin's AVM and SAH story: one year on

June 2011: Last week marked the one year anniversary of the craniotomy I underwent to remove a large AVM in my brain and the subsequent subarachnoid haemorrhage (SAH) I suffered during the surgery. The anniversary was a surreal day, as my life has changed so significantly since that day; so much has happened in what's been one hell of an 18 months.

Finding out about the AVM


In December 2009 I underwent an MRI scan due to a 'whooshing' noise I had continuously in my right ear, which had got worse following a very stressful time at work. Doctors thought it was pulsatile tinnitus but because I went private an MRI was performed. When I returned for the results I was told it was an AVM (short for arteriovenous malformation; a tangle of blood vessels) on the right side of my brain, which had probably been present since birth. I'd never heard of an AVM so went home terrified, looked it up on the net and became even more terrified!

I saw my Neuro Professor about a month later, who told me it was very large and in a difficult place for them to reach. However, my only viable option was to have it removed surgically; if not it would almost certainly bleed and the chances of surviving that are very slim as the years go on.

I'd always suffered headaches; however, they were very severe by now and I was on strong medication to control them. I was told to have no stress whatsoever (for risk of causing a bleed) and prepared for the operation looming. I had a series of 4 embolisations (glueing individual blood vessels to stem the blood flow), each a month apart, to try and reduce the huge risks of bleeding during the craniotomy.

15 hour operation


On June 9th 2010, I underwent a massive, 15 hour operation to disentangle the blood vessels and remove the AVM. It had been expected to last around 8 hours; however it was extremely difficult surgery, during which I suffered a subarachnoid haemorrhage and lost around 15 pints of blood. I was out of it for a while; however when I came round I found that I had no movement on my left side at all. It was a scary, confusing and hugely difficult time.

Rehabilitation


My husband was told I'd have to go to a neuro rehab hospital for 6 months. When he broke this to me I was inconsolable - we have two young children and it was a huge shock that not only could I not walk or (at that time) feel anything on my left side, but I'd also have to be apart from my family for 6 long months.

A month later, in July, I was given a place at a neuro rehab hospital and I was eager to get on with the extremely hard work ahead to regain my left side strength and movement. Again, it was a difficult time, learning to adapt to this new environment where I had to live away from my family for the next 5 months. I underwent daily, intensive physio and occupational therapy there and slowly progressed, starting off being completely wheelchair bound (something which I hated and was terrified I'd never get out of again) until I could eventually (slowly) walk with a stick, and then, finally, by December unaided, although still a mountain of work was needed to walk correctly and use my left arm and hand again.

It was an incredibly frustrating time as the progress I made was so slow and gradual (and continues to be) and is therefore sometimes hard to measure. It couldn't progress quickly enough for me, and I worked very hard to get improvements, but sometimes there's only so much I can do, particularly due to the significant fatigue I suffer.

My life now is very different


I was discharged in December and continued physiotherapy as an outpatient in my local hospital. My daily exercises increase all the time and I'm continuing to work hard to keep on building up the strength in my left side.

I also have a loss of peripheral vision and am currently still unsure if I'll be able to drive again due to this, which is also very upsetting. The good news is that thankfully the AVM was obliterated and I don't have to undergo any further operations, as my surgeon initially thought.

My life is now very different. I'm still unable to work at the moment due to the left side weakness and the severe physical and mental fatigue I suffer now. As a family we've had to adapt to many changes over the last year but I'm just glad to still be here with them, as I was recently told it was very nearly a much worse scenario.

It's still a constant struggle and very difficult to deal with, but I hope to eventually return to part time working and will always be striving to continue to improve.

Further information


If you have any questions about AVM, subarachnoid haemorrhage or any other neurological topic, call the Brain and Spine Helpline on 0808 808 1000 or email helpline@brainandspine.org.uk.

Erin would be happy to hear from anyone affected by AVM or SAH. If you'd like to contact Erin, send an email to webenquiries@brainandspine.org.uk and we'll pass your message on.

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