Brainstem Cavernoma



Sent: January 9, 2007

My name is Suzy and I have been thinking about writing my story on this site for a while. I think the reason I couldn't was that it made it all too real and I got too emotional to even begin.

It really started on the Monday 2nd October 2006, I went to the doctor as I had a pain in my shoulder ( I thought it was a trapped nerve) on my right side. The Doctor prescribed me sleeping tablets and pain killers, I explained that I would not be happy to take sleeping tablets and I already had some pain killers I could take at home. However I would like to be referred to see a physiotherapist. The Doctor insisted that the prescription of pain killers and sleeping tablets was the normal course of action (she did not examine me). Anyway she referred me and I did not take the prescription thank god! I learned later that this lethal concoction would have put me in a coma or induced seizures.

On the next day I met my Mum for a meal at lunchtime, I felt really rough when I got up but did not want to cancel the lunch date, so took some pain killers. At lunch I noticed I could not walk properly in my heels, I just put it down to wearing trainers too much as a fitness instructor. I really struggled to get back to the tube and held on to my Mum all the way.

Once I was home and rested I started to feel better. I did have more pain killers (ibuprofen), and by the next day I had finished the whole packet. I was in work that day and had to conduct a series of meetings, I noticed that I couldn't write properly and the pain in my shoulder was severe using the computer mouse was impossible. However I carried on and got someone else to take notes in my meetings! I even went for my usual run at lunchtime ! Which accelerated the symptoms to the point that my right leg lost feeling and I had to walk back to the office dragging my leg behind me.

My team at work persuaded me to get to the local A&E department by the time I got there that evening I was slurring my speech and sounding drunk. However after a series of tests they let me go and told me to come back to the the neurology department after the weekend if it had got worse it was now Wednesday!

The next day I took time off in the morning to see my osteopath for my shoulder, when I explained all my other symptoms she proceeded to do the same tests that they had done in A&E and said that there were only very mild differences, because of the muscles in my face dropping she said I should really get and MRI scan as soon as possible. However this did not happen until the Friday when I went back to A&E my osteopath phoned the neurology department to ensure a consultant would be available to see me, which he was and within 2hrs I was having an MRI scan and what was revealed probably left me feeling like many of you reading this, it was and is a brainstem cavernoma , a what?

I have been through 4 months of coming to terms with and recovering from the first bleed I have experienced in my 40 years. At the moment I feel very lucky, to be alive, that it wasn't worse, that I had support from family, friends and work. I know I am going to have to make some tough decisions over the next year but I am glad to be here to make them. I know we all have a different journey and I know the emotional one is as hard to cope with as the physical one. But anyone reading this I send you love and healing and all my empathy.

Thank you for posting this on the site.