Yesterday I had my first appointment with a neuro radiologist after being diagnosed via letter with my avm.
As I’m sure you will have all experienced it was a pretty stressful and confusing conversation.
In short I have a avm which is just over 3cm on the top of my brain on the right hand side (sorry can’t remember the medical terms). I’m told the location is a positive but it was a lot bigger than I was expecting.
To save people reading my background page, the reason for the Mri which found the avm was that I suffered some form of seizure on 15th September during the night. This was the first and last issue I have had.
Having had an eeg the doctor can find no link between the avm and my seizure and have therefore classed this as an incidental finding. He can provide no reason for the seizure which seems odd considering I am pretty fit and healthy and have no other medical issues.
The doctor has suggested that based on a recent study into avm’s by a French consultant (again apologies I have forgotten the name of the study) that it is deemed that the risk is significantly higher to perform any procedure to remove / reduce the avm than the risk that it hemorages. He stated the risk of a bleed was 1% but the risk from radiotherapy and surgery was significantly higher.
He has therefore suggested the best option in his opinion for me is to do nothing. He stated I should just accept I have this and move on, which as you may imagine is very difficult to do.
His next “preferred” option would be radiotherapy which would be done in Sheffield.
Just to confirm I am not critising the doctor as this may be the consensus of other professionals in his field but it was not the outcome I was expecting.
I am awaiting a letter with a summary of his advice but am left with so many new questions, for example, how will I have to adjust my life if I choose to leave the avm untreated?
I intend to seek a second opinion form another consultant but am left with the decision of what do I choose to do?
I’m not sure I am able to leave it and do nothing as I will always be left wondering when or if things may go wrong.
Has anyone else had a similar situation?
I am very new to this world and would appreciate any advice available.
I can provide my doctors details / hospital details if needed.