After lurking on this forum for months, I have finaly decided to sign up. Little over a year ago, I was diagnosed with an AVM in the left temporal lobe. It was discovered when I visited a neurologist because I had had several episodes of sudden loss of speech. These often last for over an hour and leave me scared and very tired.
My neurologist send me to a university hospital because he did not have any experience with AVM’s. At this hospital, I was told that they did not want to treat the AVM because they thought the risks would not outweigh the benefits. They mentioned the ARUBA trial, which I had already read all about, and told me that I might have another 20 years before anything happened. As I was 24 y/o, this thought did not do anything to make me feel better. I was aiming for at least 80, not 44.
My local neurologist send me to another hospital which has a Gamma Knife centre that is run by a very experienced neurosurgeon. He allowed me to choose between traditional surgery and GN, but told me that he would not advise surgery as it would come with a 10% chance of me losing my speech. A fMRI had shown that there is a neurological pathway which is important for both active and passive use of language and he told me that if the AVM w,ere to start bleeding, he would have to cut right through it in order to save my life. I had the GN procedure 6 months ago.
Right now, I am trying to write my thesis and finish my MA in literature (oh, the irony) but it is hard to focus sometimes. It really helps to know that I am not the only one going through this. My friends and family try, but I don’t think you can ever really know what it is like until you’ve experienced this yourself.