Hi everyone! My husband was recently diagnosed with AVM this past November. We recently met up with the neurologist from John Hopkins - Dr. Tamargo and gave us 2 options. 1- the brain surgery or 2- gamma knife. When I asked him why embolization is not an option, he informed us that it's because the small size of my husbands AVM and the location is too far (right parietal lobe).
A few years ago, my sister had AVM on her kidney and was treated thru embolization successfully at Walter Reed National Military Medical Center. And last year, one of our good friends was initially diagnosed with AVM but turns out he had DAVF and was treated thru embolization as well at John Hopkins, which is why John Hopkins was always our first option.
I heard that most of the time, it's doctor preference on which treatment to perform. We have a second opinion appointment at Inova Fairfax today to see what options they give us.
Wanted to know if anyone has had Gamma Knife treatment for AVM from John Hopkins?
Hello Carla. I had GammaKnife, but I had the procedure done that the University of Maryland Medical Center. I don't remember much about my time during the procedure since I was sedated. I remember have the frames put on my head, and then being wheeled into ICU after my procedure.
My AVM was in my Parietal and Occipital Lobe, so I had double-vision for a few weeks after surgery. I had trouble walking and had to get around by a cane for a few weeks. Please let me know if you have any further questions about the procedure. Good luck to you and your husband. How are your sister and your friend doing?
Hi Carla. I'm glad that your sister and friend are doing well!
The doctor that was "assigned" (I cannot think of a better word) to me said that that was the procedure that I would have. I don't remember much of his reports or what he had said to me since since I was sleeply most of the time thanks to the morphine and percasets. I wish I could be of more help. Best of luck.
Hi Carla...I just realized that I did not answer your second question. My AVM is not yet obliterated. Interestingly, I was told a little over two years that I was AVM free. After experiencing some strange headaches a few years later, I decided to see a Neurologist in my area. After an MRI and an MRA, she told me that there was a "new growth" found where my AVM is. She's keeping an eye on me.She's seen some improvement since my first MRI and MRA. She's one of the best doctors that I've seen since my rupture.