Removal of Cavernous Haemangioma


From:"Emma Ramsay" emmaramsay@ntlworld.com
Sent: August 22, 2003

My name is Emma, I am 33 years old, married, with two daughters and I live in North East Lincolnshire, England. This is my story.

On 22nd November 2002, I awoke with numbness and tingling in my right leg and hand. Within one hour the whole of my right side felt numb and I felt slightly disorientated. I saw my doctor the same morning who said it was a virus, I then asked for a second opinion because I was convinced there was something seriously wrong and, being a nurse, I suspected it was neurological. The second doctor also diagnosed a virus and so I continued working for a week gradually feeling more unwell.

The consultant I work with became concerned about me and sent me for an MRI, where a brain stem haemorrhage could be seen and so I was transferred to a neurology unit, which completely shocked and frightened me. I lost the use of my right side but with intensive physio I was able to recover slowly. I was diagnosed with a cavernous haemangioma in the left pons in the brain stem. I was told it was extremely unlikely that it would bleed again.

Eight weeks later in January, I was sat at home with my husband when the numbness and loss of balance suddenly returned and I knew I had had another haemorrhage. We drove straight to the hospital and I told them with no uncertainty that I had haemorrhaged again. They performed a CT scan, confirmed another bleed and admitted me. Again, I lost the use of my right side and my balance was appalling, but I had the same physio who helped me enormously with hydrotherapy and hand therapy.

I was told that surgery could not be performed due to the risks involved. I had done a lot of research on the condition between the two bleeds and I knew that surgery would be my only option if the haemangioma was going to keep haemorrhaging. I pestered the doctors until one of the 5 neurosurgeons, Dr. Kevin Morris, at the hospital agreed to see me, He is experienced at removing tumours from the brain stem but had only removed one Cavernous haemangioma. He contacted other neurosurgeons in England and did lots of research and couldn't find anyone with any more experience than himself and so ensuring that I fully understood all the risks he agreed to perform the surgery.

I had surgery at the end of March 2003, which took ten and a half hours! I was back home after a week but I had horrendous double vision and no one knew if it would be permanent. Once home I removed the eye patch they had told me to wear and, despite vomiting and headaches from the double vision, I forced myself to keep using both eyes and the vision gradually came back to normal.

I was also deaf in my left ear after the surgery which was found to be due to leakage of CSF (brain fluid) through a hole in my skull into the back of my eardrum. I therefore had to have further surgery to fix the hole. To make matters worse, I actually woke up during the anaesthetic, but that's another story!! I was extremely poorly after the second operation because the CSF had to be drained off for 4 days to allow the hole to seal up properly.

I am now more or less back to normal. I still suffer with fatigue, but I'm trying to look after myself a bit better than before this happened, and I still have patches of numbness and slight weakness on my right side. I am just grateful that these are all the deficits I have been left with, and I view my recovery as nothing short of a miracle!!

Sorry this story is very long but it is really only a brief description, it does not include the emotional trauma involved in dealing with something like this as many people who read this will know. Emma

Emma Ramsay
North East Lincolnshire, England