Dear all,
On 20.10.2018 (roughly 24 days ago) my wife had a brain hemorrhage due to an AVM deep within her cerebellum that we did not know about. At 16:30 we were going out for a late lunch, at 17:00 we took the ambulance, 17:15 arrived at the hospital, and at 20:30 of the same day she was entering into an urgent craniotomy to both contain the bleeding that kept spreading, as to take off the AVM. We acted as fast as we could and luckily we took an ambulance to the ER of one of the best hospitals in Germany, the Charité in Berlin.
What followed was a week of serious life threatening situations, for her ICP kept going higher and higher and they needed to do a second surgery to “alleviate” the pressure by making a hole in her skull. 7 Days after the surgery she completely changed her behavior, and it starting getting better and better - spite of an MRSA infection she got, which is by now fully contained and cured.
Two weeks later she was taken off her sedatives (yes, she was in an induced comma state for 2 full weeks), but she did not wake up, presenting thus signs of regular comma. We were desperate but kept the hopes up. After three weeks, she started opening her eyes, and was mostly on a vegetative state, sometimes responding to music by smiling. And now, 2 days ago, she started to respond us by blinking when asked and moving a bit her body parts : ). Even though she still breaths assisted by a ventilator through her tracheostomy, she is already able to breath by herself - but causes her a bit of stress still.
The doctors want to send her to a REHAB clinic where she will take different therapies to regain her functions as soon as possible, probably tomorrow (14.11.2018). She cannot talk still, though she moves her lips a bit. She cannot swallow as well. Most of the time she cannot move her body parts when asked. Even though we know she is fully conscious and we can speak to her, and she answers us consistency when blinking, she cannot do sometimes tasks that require a bit of concentration (like blinking whenever she hears the word “A”). She also seems to have difficulties looking to the right side of her head, but not to the left side. But she really, really smiles a lot when we interact with her - responds well to music or anecdotes. She has so far had a very warm heart and good mood, as far as we can tell.
The doctors are hopeful because she is young, and have been showing good (almost miraculous) progress by waking up from her comma and vegetative state so soon. Her brain injury by the bleeding and the surgery was devastating, she has lost a big part of her Cerebellum, but “luckily” the bleeding and ICP damage was only contained in the Cerebellum, not apparently affecting the brainstem neither any other brain part. The doctors said that through months of therapy she can recover most of what she has lost.
My question is mainly to those who have already recovered from an AVM like hers, or whose loved ones have. What are the best practices that have helped you during the rehabilitation? Does the constant presence of the family actually helps or makes it more difficult for you to concentrate? Could you please cite to me the types of activities and therapies that have worked for you the most? (of course this depends highly on each case and person, but nevertheless I would really love to know).
Last but not least, we live in Germany but she does not speak well german (was in fact, studying it at the moment), only english. Our native language is Portuguese, we are ex-pats from Brazil, but she seems to be understanding both English and Portuguese well. The rehab centers have doctors who speak english, so I believe it will be fine - but would you say that it is invariantly better for her to be on a native speaking rehabilitation clinic for her recovery? Transporting her to Brazil to make such extensive rehab might be not viable, even more for we think she will have a better treatment here in Germany.
All the best and all the love to all of you!
Luiz.
)
hugs. Angela
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