GIANT sigh of relief!

I had a 3 month follow-up MRI last week, and according to my local neurologist and neuro-radiologist my cavernous angioma had only been partially removed!! This is NOT what we wanted to hear. I had this scary surgery so that we could be done with cavernous angioms...done with bleeding brains...done with worrying about every headache...done with seizures.... and done with every strange neurological symptom that may arise as a result of the monster that was in my head. According to these two ladies, my latest MRI showed a small piece of the very monster we had hoped was gone forever. The problem lies in the fact that these things(cavernous angioms) are known to regrow and re-bleed (please, never again!!!) if they are not removed completely ...hence why we researched the surgeon so explicitly and why we went to Dr. Spetzler specifically. He is supposed to be one of the world's best neurosurgeons specializing in cavernous angioma resections(removals). As scary as the surgery was, and as challenging as my recovery has been, I am still ok with the whole process as long as the thing is out of my head...completely!!! I have not had very reliable MRI readings here locally though...so for the past week we tried to remain hopeful that this was just par for the course and consistent with my past experiences...Maybe the local doctors had misinterpreted the latest MRI? Yep!! Same old routine. We sent my latest MRI to Dr. Spetzler as soon as we received the bad news; and his resident called Thursday night to give us the good, very good news that my cavernous angioma has, in fact, been fully resected! Yippee!!


My experience has been that cavernous angiomas are virtually unknown in the neurological community outside of a few really fantastic experts. This is one of the greatest obstacles in finding good treatment/care for this condition. Since my first diagnosis in Aug 2009, I have received so much wrong, dangerous, unreliable, and scary advise from countless doctors with a "neuro" as a part of their title whether it has been a neurologist, neurosurgeon, neuro-ophthalmologist, etc...you get the point. That's why it's so important to be an advocate for yourself if you carry this or any other serious medical diagnosis. For now...., I'm in the clear...and we like it that way! This latest scare is yet another reminder to always cherish those you love and to be thankful for everyday because everyday is such a gift and blessing.