Wednesday, 24 January 2007

brainstem cavernoma

I really wanted to keep everyone up to date with how I am doing and help friends and family to understand my condition thoroughly, so here goes my first blog.

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 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 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 had quite a journey of recovery the emotional one is as hard to cope with as the physical one.
After the loss of feeling in my right side and immense fatigue I feeling much stronger and am planning on returning to work, and waiting to meet with a neurosurgeon to discuss removing the brainstem cavernoma.

For those of you wondering what a brainstem cavernoma is I will try to explain. Using parts of the Angioma Alliance UK information guide.

Cavernous angiomas are clusters of abnormal blood vessels found in the brain and the brainstem, spinal cord and rarely in other parts of the body. Cavernous angiomas look somewhat like rasberries; they consist of many little bubbles (caverns) of various sizes filled with blood and lined with a special layer of cells (endothelium). These cells are similar to those that line normal blood vessels, but they lack the layers of protection found in normal blood vessels, and the bubble-like structures of cavernous angiomas sometimes ooze blood.
While an angioma is technically a tumour, it is not cancerous and does not spread to other locations. It can however increase in size following bleeds, again it is not cancerous.

Symptoms depending on their location can cause seizures and other neurological deficits, including numbness weakness in arms and / or legs, ocular difficulties, speech and balance problems. If you would like to obtain more information go to

Love to you all I will keep in touch


carol said...

Hi Suzy

I have a brainstem cavernoma and am awaiting radiology assessment. I have neurological defecit in my right side as well as my vision. Any good comments would be good!


suzy mee said...

Hi, I have just added to my blogg and read your comment. I hope that your situation has improved or you have at least had some answers from your MRI. Good luck and try and stay positive.