The fight of your sister and your family is inspiring. I am really happy she continues to make progress, in spite of all the new obstacles she’ve had to tackle in between! I am absolutely sure she will continue to do so, please keep the hopes up!
I would like to share with you that we have a surprisingly similar story. My wife had a bleeding in her cerebellum in October 2018. She has had to go through very similar steps as your sister. As her, my wife also had an enlarged 4th ventricle post-craniotomy and craniectomy. The doctors have tried solving it by putting a VP Shunt directly into that ventricle. That turned to be very VERY wrong: she not only got worse clinically, as that has also caused a new hydrocephalus on her right upper ventricle which she didn’t have before!. They have put a 2nd shunt inside that ventricle, which also turned out not to help and only made things worse. She has then taken off both shunts, and only put a prosthetic bone flap back where she has had the first craniectomy in the first place: and it all seemed stable and fine. She went back to rehab, started to make tremendous and almost miraculous progress (by the end of the 3rd week, she was starting to eat, speaking got a lot better, and she even started to take the first steps walking). But then again, new hydrocephalus complications have arisen… and this time it also caused a bleeding in her frontal lobe (as your sister), and mostly troublesome: a damage to the midbrain due to the inter-cranial pressure caused by the hydrocephalus… She has had other 3 surgeries (2 pellucidotomies, and a new VP shunt) to contain the hydrocephalus, and for the moment it seems fine. But she is back 10.000 miles now it seems. Back in a coma, slowly waking up, but worse, it seems she will have gigantic new problems moving her body parts (if she can move her limbs at all)… The swallowing that was already good enough for her to eat, is now totally gone. Speaking - which was already very good - is gone too. We are still, though, happy she is starting at least to open her eyes a bit, able to listen to us, able to sometimes answer us with a half-blink, after a 3 weeks waiting. She is a tough fighter!! So is your sister, for what I can tell!
I wanted to share this with you, for our stories seem so similar, though the timings are different. I have read somewhere else that AVMs and bleeding per say in the Cerebellum are one of the least studied ones, for they are one of the most rare. There is also a lack of studies on the rehabilitation potentials and prognostic factors for young woman adults (my wife is now 32, your sister 29?). It does seem though that there are many similarities to people who have underwent it, in regards to the possible complications, even in the long run. At least to us, the doctors have never ever told us of such things. The extent of the damage caused by the hydrocephalus (bleeding in the frontal lobe, herniation on the midbrain) is fairly more complicated to rehabilitate than her initial damage caused by the AVM and the first bleeding… We’ve always thought, hoped, and also heard from the doctors, that her toughest days were far behind - but now we have a new beginning from ground 0 again. Hearing your story, and how your sister continues to rehabilitate, gives us hope!!
I wish your sister and your family all the endurance, resilience, and a wonderful recovery! Please do keep us posted. I will keep you and your sister also in our circle of good thoughts and prayers!