Friday, April 10, 2009

"Patient has a small AVM in the brain" Part IV

I demand an addenda to the radiologist's report, and call him for several days until he finally breaks and returns my call at 8pm. It's a war of attrition, and frankly, I have come too far to just surrender now. For his part, he is apologetic and very nice on the phone, though I still think the first report was unforgivably inadequate and unprofessional. It would seem like precision of language would be key in this situation, and that the specialized skills of the radiologist, and the mandate that he and he alone interpret the images, would result in a less laissez-faire assessment. I ask him to bring up the films on his computer while I have him on the phone, and he tells me that the nidus of AVM has shrunken to 9mm by 4mm. This is a reduction of about 50%. My anger towards the radiologist is replaced by gratitude, and relief begins to settle in. About thirty seconds after I hang up I realize that this means that I still have an AVM. That nothing reduces risk except obliteration. That risk is cumulative. That I am getting closer to that 'average age of first bleed' statistic. That I have begun another year exactly were I started the last. When I told my husband that the AVM had shrunk, I actually broke down and started sobbing in the middle of our kitchen. It was hard to explain how I could feel both so happy and so devastated at the same time. More than anything, there was just this overwhelming wave of exhaustion. Tears of joy never tasted saltier.

4 comments:

Andrea Stern said...

sorry to read what you are going through. i know it brings up a lot. i had the surgery and removed mine a year and a half ago. my blog - andreastern.blogspot.com
if you need anything from others who go through this a great site is - http://www.avmsurvivors.org/
thank you for sharing your story.
andrea

Choni B said...

Thanks, I am familiar with avmsurvivors.org, a great site! I have this blog to vent my offensive humor and pessimism, which I felt did not belong on avmsurvivors, where I try to limit the things I say to encouragement, tact and optimism ;)

chris said...

We have a son, now 19 years old with an AVM in the Thalamus of his brain. We have been dealing with this for 9 years now. One radiologist in our home town. It was on a Friday and we were traveling over the weekend to Houston for a follow-up visit. The doctors in Houston wanted the report. The radiologist wrote the report stating there was a possible anuyrism. The he left for the weekend without sending the report to Houston. At this point wmy wife is not allowed back in that office after voicing her opionion of his practice very loudly in his waiting room. http://www.chriscrosses.com

Unknown said...

Any update on your condition? My AVM rudely showed itself in June. I hope you are AVM free!