This is the 5th post in a series detailing my AVM story and Cyberknife experience. It's now day 2 after having received my one and only Cyberknife treatment for my left posterior temporal AVM.
I was put on a course of a corticosteroid (Decadron/dexamethasone) 4 mg three times daily after my procedure. This has helped with edema/swelling at the treatment site, which has helped prevent most of the headache, nausea and fatigue that can happen with this type of treatment. My last dose was this morning. I awoke with a mild headache (not quite as much as yesterday morning's headache) and no nausea (I did take some nausea medication before I went to bed last night). Just like yesterday, breakfast and the last dose of Decadron got rid of the headache. I got a little bit of a headache in the afternoon after that last dose of Decadron wore off, but quickly took some Tylenol to nip that in the bud.
I definitely feel some mild fatigue today, despite that last dose of Decadron and getting plenty of sleep last night (about 10 hours). Therefore, I decided not to walk as I had yesterday, but just run a couple small errands and do some small grocery shopping with my hubby, cook dinner (not too involved of a meal), and then rest. I'm still trying to keep some mild activity going, and it really did help my energy level from dipping down any lower. I am definitely tired now, though! After I finish with this blog post, I am relaxing and crashing! It'll be interesting to see how tomorrow goes with no Decadron at all ...
So, to boil down my response related to the possible/expected side effects so far:
Headaches: Mild when I have no Decadron on board or the last dose is wearing off, helped by Tylenol.
Nausea: None. Yay!
Seizures/Visual disturbances: None, but I was already on Keppra prior to having my treatment.
Fatigue: Mild. Gonna miss the Decadron, but plan to keep moving as much as possible!
Balance issues (my treatment area was right next to my inner ear): None to speak of. Just a little tired when getting around. I definitely stuck close to my husband when we were out today.
Hair loss: None, but it's still too early for that.
So, another day under my belt. Keep positive all you AVM'ers, family, and friends! Thanks for reading, take care, and I'll keep ya posted!
This is just an account of my personal experience in the hopes that other folks going through diagnosis and trying to figure out treatment options might find some direction or hints at answers they have been looking for or might just be interested in seeing what someone else's experience has been. I want to emphasize that every AVM is unique and needs to be diagnosed and treated by a qualified physician (which I am not). I am certainly not qualified to make any recommendations for diagnosis or treatment. Bottom line: we are rare, special people and need to be treated as the unique individuals that we are!