AVM - 3 year story, diagnosis, radiotherapy, haemorrhage, craniotomy, cranioplasty and recovery(!)

Hi, this is the first time I have written on this forum but my family and I have read a number of posts over the last few years trying to find answers, comfort and hope (at times). I thought having read so much about everyone else, I should write my own story, which has a few twists and turns but I hope will offer comfort to those who have had challenges wth AVMs.

Out of the blue two days before Christmas in 2011 I had a seizure in the car with my (then) 2 children and husband who was driving. It was very scary and you naturally fear the worst having never suffered a seizure before. After a few appointments and an MRI (word of advice, make sure you see a neurologist straight away not a GP who ‘specialises’ in neurology) I was diagnosed with having a large AVM in the parietal temporal lobe graded 3-4 (some very large nasty draining veins). After an angiogram (sounds scary but actually not too bad), the neuro team in St George’s in Tooting, London decided that Gamma knife was the best option. I found out later that the AVM was too big for embolization and too risky for pre-emptive surgery. Shortly before the gamma treatment I fell pregnant completely by accident! The treatment team were very relaxed though recommended a c-section and to postpone the treatment for 12 months. I had no issues with the pregnancy and all went to plan. I had not any seizures since that first episode in the car. I had the Gamma knife treatment in Sheffield (biggest in the country) in October 2013 and while the frame fitting was a little uncomfortable the treatment itself was straight forward and I was out the next day and back home. I suffered a couple of seizures in November and the following January after the treatment, which I am told was unusual. Losing my driving licence again was the main frustration. Aside from a little hair loss (my AVM is close to the side of my head) there were no other side effects. Life seemed to be on track.

Unfortunately about 1 year later (Sept 2014) I suffered a major brain haemorrhage (symptoms vomiting, flashing lights, acute pain in the head, nausea) at the end of September this year. I have no memory of any of this but the following rather scary sequence of events this is what happened. Initially I remained conscious and responsive but was transferred to the Neuro Intensive Care Unit (NICU) in St George’s Tooting for observation. It was hoped that my brain would clear the head of blood on its own though there was a significant risk of hydrocephalus (brain swelling). While I was conscious and in pain, I was being closely monitored which ultimately saved my life as I had a re-bleed 2 day later. The scans of my head were “terrible” and my clinical condition was very very serious (non-responsive, fixed dilated pupils) and following emergency neurosurgery to remove the blood clot and pressure, my prognosis was very poor – my family were told I was unlikely to survive, and if I did I would most likely be paralysed on one side, and unable to talk. The fact I was young (35) and they had been able to operate quickly were the only things going in my favour. I was placed in an induced coma with drain coming out of my head (draining blood from the ventricles). 3 days later I suffered from brain oedema (swelling) with again very serious clinical condition (fixed dilated pupils again) and had to have an emergency crainiectomy. The medical staff were brilliant but not giving anything away – the prognosis was still poor and the neuro team were still faced with tackling the now active AVM.

About a week later we had the first piece of good news, I had an angiogram while still in a coma which showed that the AVM had vanished to the surprise and delight of everyone (probably due to the radiotherapy, the bleed, and the neurosurgery). The focus then became very much about waking me up. About a week later I came around and pretty quickly was able to talk and move both sides of my body to huge relief from everyone. I was very weak though. My husband tells me that I was completely bonkers for about another week and talking gibberish but that gradually I began making more sense. My swallowing reflex gradually improved and I was back onto solids about 10 days afterwards. My short term memory was initially completely non-existent and my memory for about 18m previous to the haemorrhage was confused and patchy. My ability to process information though was intact and I could hold meaningful conversations (I just couldn’t remember them). Over the next few weeks, my strength gradually returned and my longer term memory became less confused. I was discharged 6 weeks later as my family had a really great care structure at home. While my family were overjoyed at my progress I found it scary and very unsettling for a while but as I continue to recover I get more and more positive. After about 8 weeks my short term memory started returning and is still improving 3.5 months later. My main symptoms now are fatigue, and when I’m very tired my short term memory is affected. I have had headaches but this is mainly from my head missing a section of skull. I also have had to wear a very ugly crash helmet, but it’s something you get used to.

I have just had a follow up angiogram now that all the brain swelling has gone down which shows that the AVM has gone (hooray) and the neurosurgeon has confirmed that it is very unlikely to return. He also confirmed that with AVM gone I was also at lower risk of seizures. The relief of having it gone is fantastic though it has been a stormy journey getting there. I have just had my cranioplasty and feel like I can now concentrate on getting on with the rest of my life (no more helmet!).

I wanted to post this as I thought that I wanted to share a good news story. At times with any brain injury or neuro procedure it can be scary, uncertain, debilitating and perhaps seem very bleak, but over time things do improve and no outcome is certain even when the prognosis is poor. The reason my AVM bled was just down to bad luck, nothing else. While I have been very fortunate I can’t speak highly enough of the NHS neuro team who have treated me.

**Update – May 2015**
I meant to post this some time ago but never got round to it. It is now 5 months since my cranioplasty and I’m doing well. Still no seizures, my memory is improving and my energy levels are creeping up all the time. I’m gradually taking on more and more and feeling more like my old self. There are residual bits and pieces which continue frustrate me (organisational stuff I find difficult but this is improving). I am active – swimming, going to the gym etc. and while there was concern about physical left side weakness, this has gone. I am looking in to reapplying for my driving licence.
My family have told me that clinging to hope is far better than sinking into despair – deal with the bad news only when you have to, not before and I agree. I hope my story provides some hope or reassurance to anyone who is facing into anything similar or who is on a similar journey. We were unlucky in some respects but incredibly fortunate in others. We wouldn’t have changed any of the decisions we made including the radiotherapy as ultimately everything will have contributed to the AVM obliteration.Talking to the neurosurgical team we asked whether gamme knife had caused the bleed, they didnt know but . However what was clear was that the surgical team would never have elected to operate on my AVM, it was too big with some large draining vessels. Gamma knife was my only option and had I not had the haemorrhage the treatment was striaght forward.

An inspirational story, Georgie, and your family is very wise. Thank you so much for sharing it!

Georgie, thank you so much for sharing your stressful experience. Your family and you have been through so much and you must be a very strong woman! I will include your family and you in my prayers. Please keep persevering and again thank you for sharing!

Hi Georgie. Thanks so much for sharing your story. I was very moved by it. I have an unruptured AVM of the Cerebellum and also suffer from recurrent Hydrocephalus. At the age of 12 I began to have debilitating and very painful headaches. At 14 (after numerous migraine tablets failed to have any effect) my GP sent me for a CT scan which showed Hydrocphalus (water on the brain). I had a Shunt put in and that has been revised 3 times now. At 27 an MRI showed I also had an AVM. So far this has not given me a huge amount of problems and I work, drive, have a family etc. I am called to hospital (John Radcliffe in Oxford) every other year for an MRI so my consultant can keep an eye out for any development. I have just been informed again that there hasn't been any. So for now I am electing not to have treatment. In all honesty the thought of treatment is really scary and I have heard in the past that it can cause an unruptured AVM to bleed. My AVM is large and a combination of embolisation and Gamma Knife would be the only options open to me due to this and its location. I am 42.

Wow. This makes me feel better about my experience. Mine was very traumatic to me but this blows my story out of the water. Thank you so much for sharing. I’m glad to hear that you are doing well.

Hi Georgie,

Thank you for sharing your story with us. You have been through a lot. So glad to hear that you are doing better. God bless you.