Brain haemorrhage and AVM - my story, by Jill Hocking

I am 35 and I was fine until I had a bleed at the end of December 2009, which I now know was caused by an AVM in my brain tissue. I was in hospital for 3 weeks recovering, then with my family, and I then returned home. In August 2010 I had Gamma Knife radiosurgery.

This was an extremely difficult period of time and below I have written a little about this time and the resources and support I found useful.

Making sense of what had happened


Following my brain haemorrhage I left hospital feeling too tired and weak to take in my situation or to even try and understand what an AVM was. Initially I didn’t have the energy to think about treatment options and my mind was so fragmented I couldn’t even make sense of what had happened.

Gradually after I had got stronger and felt more able, I sent away for some information booklets and then I began to visit the library for about an hour each week to try and understand what had happened so I could make some attempt to move forward. This was a very slow process and, to be honest, when I first began to look at the information it was hard to know what sites to use and consequently some of the information was quite frightening and I did start to wish I hadn’t looked!

Really I wanted to escape from the situation and not take any action at all, as it all sounded too risky. However there some really useful sites and support out there, so I have listed some of the resources I found useful. These are not all internet based only.

Small steps


When I began looking at the information I did not set a big goal but began with very small steps which helped me over a very long period of time, to achieve the goal of deciding upon what treatment to have and understanding enough about AVMs to satisfy myself. Of course everyone is different and moves at a different pace, mine was very slow and I think this was partly coming to terms with what had happened.

I began with accessing some information from the Brain and Spine Foundation. I looked at their internet site and phoned them and ordered some booklets. The information they have helped me understand what a brain haemorrhage was, what is 'normal' following a brain haemorrhage and some tips to help me. This helped me understand that what I was experiencing was to be expected and also helped me to take some small practical steps to make life a bit easier.

As time went on I felt able to order and look at information concerning what an AVM was and treatment options. It all seems very daunting but I just did a little as I felt able.

AVM support


As time progressed I found the site AVM Support which has a section of the website called Our Experiences. This is a collection of people's stories and they all have /had an AVM.

Initially I wasn’t keen on looking at this but over time I wanted to contact other people. I emailed some people on the site which provided information, advice and support at a difficult time. It was good to be in contact with other people who had gone/were going through treatment, or thinking about it. It helped to know that people had come out the other side and even those who hadn’t were sharing some element of a common experience. I guess it was also about not being alone or the only person with this fairly unknown condition.

Brain and Spine Helpline


A few times I rang the Brain and Spine Helpline, where trained nurses answer the phone. It was useful to have someone to talk to if I felt overwhelmed with information, or wanted to understand things further. They give information and support and a listening ear.

Helpful things


As I said I started out being very unwell and not wanting to face up to things. The key for me is very small steps and goals. Rather than planning to decide upon treatment I set out to understand what had happened and then find out what each treatment involved and I asked lots of questions over quite a long period of time and gradually things became clearer.

Some other things that I found helpful were as follows.

  • I drank lots of fluid each day (avoiding caffeine)
  • I kept a notebook and pen by the phone/in my bag
  • I wrote dates on a calendar
  • I would plan journeys the night before. Including what time I would get up, leave the house, catch the bus etc.
  • I always carry water around with me
  • I was advised to try Sudoku/crosswords so used to do one easy puzzle a day
  • To help with my frame of mind I would go for a walk each day (when I was able to)
  • I tried to do the things I enjoyed as I felt able

Resources


Brain and Spine Foundation
3.36 Canterbury Court, Kennington Park, 1-3 Brixton Road, London, SW9 6DE

Helpline: 0808 808 1000

www.brainandspine.org.uk

The Brain and Spine Foundation provide online information, a helpline and will send information leaflets (which can be ordered on the helpline).

This is on a range of subjects including what a brain haemorrhage is, what to expect following a haemorrhage, information for family/friends, AVM information and treatment options. The information they provide is excellent and I would thoroughly recommend it.

Some useful links to information on the Brain and Spine Foundation website are:


AVM Support

www.avmsupport.org.uk

AVM Support provide an online resource which includes information and also a section called Our Experiences in which other AVM sufferers share their stories and it is possible to make email contact with other people in a similar situation.

National Institute of Neurological Disorders and Stroke

www.ninds.nih.gov/index.htm

This is an online resource which has the facility to look up arteriovenous malformation and provides information on this. There are also links to other related websites.

Other sources of information


I also found out specific information by typing questions or words into the internet search engine.

Local libraries provide internet access and it is possible to book a computer. At the current time in my area it is possible to get 30 minutes daily access for free if you are a library member.


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