So after a few weeks of a wait (and 5 months after my bleed) this afternoon I have Novalis TX Linac based SRS.
My appointment was at 3pm, arrived just before to wait. Called in at 3:07, and back out at 3:40. Super fast, painless, feeling less and no symptoms since (about 5 hours ago now).
4 arcs of SRS, with a total of 18GY delivered to my 9.5cc parietal occipital avm.
Glad to final the treatment done, and now just to watch for any side effects for the next few months. Such a weight lifted that it’s now done and I can get back to normal while I wait for hopefully obliteration.
Wow, that is super fast! The medical world is evolving so quickly. Don’t be shy in reaching out to us if you develop side effects. Really great to have that in the rearview mirror! Take Care, John.
Thanks @JD12. I was amazed at how fast andissue free it was. Ill keep a close eye for symptoms, and keep active on here if anyone has any questions about the precedure. Hope to be if use.
This is useful for those planning to go into SRS. While I’ve not had radiosurgery, my expectations are that you’ll feel nothing for a few months.
Try not to be hyper-vigilant: I don’t think it helps at all: but I expect you may have some weirdness go on in a few months. Sometimes that needs medical help, sometimes it doesn’t.
If you fancy documenting how you get on here, that can help others.
We all arrive here completely perturbed by our new prospects and the one thing we all have that we can encourage each other with is how our own experience goes.
I don’t know about you but until I went through a catheter embolization (in my case) the whole thing was as almost frightening as it is possible to be. Having got through the other side and recovered nicely, I could do it again if I needed with much less worry. I think the fear of the unknown is a good part of what we face. And I don’t mean to disregard the fear of the risks of a rupture or the risks associated with any of the surgical approaches. Those are real but the fear of the unknown really adds to the problem. I think.
Hi there! It’s been a long time since I’ve posted on here—been reading many of the posts on the daily though. Synchro, I opted for Novalis SRS treatment thru UCLA rather than gamma knife. The actual process was just as quick as yours, and they let me keep the creepy head/face mask too!
Mine was done back in June of 2018. My cerebellar AVM was almost completely obliterated within a year—I’ve had annual mri’s to keep an eye on it but to date there’s nothing to see.
My side effects were typical I think. Lots of headaches (I’m used to that), light headedness, nausea and constant fatigue.
I’m so happy you’re on the road to recovery. The whole process was exhausting, but now you can focus on what’s ahead. Dick made a great point, “try not to be hyper-vigilant: I don’t think it helps at all.”
Time goes by really fast despite having to wait all those months to see if treatment worked. Keep us posted!
Many blessings,
Tina.🩶
Thanks so much for sharing your experience. I just met with my new neurosurgeon yesterday and he wants to do dosed-staged LINAC. I’m nervous, but not as much as I was when my other neurosurgeons wanted to do volume-staged gamma knife. I look forward to seeing your updates and wish you the best on your journey.
I’ve just transferred my treatment to UCLA. Dr Wang. Glad to hear you had a good experience. I’m feeling far more confident with the LINAC treatment than I was with GK.
2 weeks out now for me, and honestly noticed no difference or changes compared to before. Nothing bar feeling so much relief that something has at least be done to try fix it.
Another update from me here. Coming up on 3 months since treatment. Still no issues to speak of thankfully. No headaches, vision issues or sickness to date.
I can feel that i do indeed have a brain in my left hemisphere (which my wife says at least it proves there is a brain in there lol), its not pressure or pain, just an feeling of fullness only on the treated side.
Interstingly, The tinnitus i got from the first bleed (maybe due to pressure from the AVM) has been very variable sicne treatement. Sometimes louder, other times very faint, with changing pitch and tone (sometimes multiple changes per day). Im taling this as a good sign that somethings happening.
Next appointment is in 3 months with the surgeon, so i expect a scan before then. I had expected a 3 month scan, but i guess with zero resultant symptoms its probably not needed so soon.
Another update from me on progress. Nearly 7 months since treatment. Still zero symptoms or side effects, absolutely nothing. The fullness or feeling i had in my left hemisphere is gone, and my tinnitus is lower than before. Feeling great and back to daily life (including 8+ flights over the last few month’s).
My next consult with the surgeon is in about a months time, not expecting it too take long as its (im guessing) just to check in with me.
Expecting another scan maybe 1 year out from treatment.
Sounds excellent. People do seem to start to see change at about this point in treatment, so it’ll be excellent if it stays all smooth sailing with you but it may not.
Very good to hear your updates and very helpful for others about to start the process! Thank you for sharing!
A fresh update on my progress. About 8 months out from my SRS i had another bleed. Thankfully smaller than before, passed out, vomitted and called an ambulance once i woke back up.
Spent about 5 days in hospital under observation, passing all cognitive & visual tests showing no damage done. My surgeon did another angiogram and confimed that he sees changes occuring already which is a good sign.
We are marking this down as just bad luck, surgeon wants to continue the course and see out the latency period of the SRS (which i also do), so just a bump on the road to recovery.
Home now trying to shake the physical damage a week in a hospital be does to an active person. Overall no wanted but accepted on the path to recovery.