Hi AVM friends.
I am in desperate need of advice from anyone with a similar experience.
I was diagnosed with a 2.5 cm unruptured AVM in my right thalamus/basal ganglia in the beginning of 2011 which was treated with Gamma Knife Surgery later in June of 2011 with a dose of 20 Gy.
11 months later, I began to experience terrible pressurized headaches – which felt remarkably different than any headaches I'd had leading up to this point from my AVM. After a trip to the ER and an MRI, I discovered that this new pain was from swelling around my AVM caused by the Gamma Knife and I was treated with a tapered dose of dexamethasone (starting at 16mg per day and slowly tapering off during the course of one month). The steroids worked wonderfully to control the swelling, however, they had many side effects as well (which I can discuss separately for anyone who is wondering about this).
Since May, the swelling in my brain from the Gamma Knife procedure has reoccurred each time I've gone off the steroids (three times) and each time has been treated with varying courses of, yet, dexamethasone steroid tapers.
I’m interested to know If anyone has tried other methods to treat brain swelling from Gamma Knife besides oral steroids. My neurosurgeon says that the swelling can’t go on forever, but it’s been 6 months already and I don’t see an end in sight because it keeps coming back every time I treat it and it's starting to get me kind of depressed... Any suggestions or advice you can provide would be greatly appreciated!
I’m interested to know if anyone is out there who has had brain swelling post-Gamma Knife and how long did it last (and also what treatment did you receive?).
Thanks so much for any advice or experiences that anyone might be able to share!