My Sister

Hello everybody! Yes, we are going through a very difficult time. On November 11th, my sister, 41 years old, had a severe cerebral hemorrhage while undergoing curettage due to a spontaneous abortion. Luckily for us, she was in a reference hospital in our city and was promptly attended to, undergoing emergency surgery (craniotomy). After the surgery she was kept in an induced coma for three days and after removing the sedation she took another 7 days to wake up.
Today she is awake, opens her eyes, moves her body on the left side, but has no sign of consciousness. It has been days of great anxiety and distress. We know it will be a long process, we continue with faith.

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Yesterday my sister began to have the first signs of consciousness.
She held her cell phone with her left hand and managed to unlock it using the 6-digit password, she smiled, she was moved by a photo of our father who passed away this year, she showed her son’s photo to the nurses.
We haven’t had much more socializing, she seems tired and sleepy most of the time.
But we are happy and excited about small achievements.
We continue to believe she is coming back.

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That does sound like encouraging signs. It sounds like her bleed has done her rather a lot of damage but with patience and perseverance I hope she will get much better. Usually, getting better from a big bleed takes a long time – often a matter of years rather than months or weeks – so you’ll need to be very patient, I expect. Sometimes people emerge from these things more quickly but I think it is better to have in mind how long it can take and be nicely surprised if it is much quicker.

I assume she has a diagnosis of an AVM. As the underlying cause of her bleed? Or some other kind of vascular anomaly?

I hope you are doing ok. I’m sure you are worrying about her and I hope that her family are doing ok, too.

Very best wishes to you all!

Richard

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Thank you, Richard!
Yes, her bleeding was due to an AVM.
Interestingly, like me, her brother, I had a bleed from an AVM fifteen years ago.
We have a big age difference, in me the bleeding occurred at the age of 39 and in her at 41 years old.
In my case, the diagnosis was made after a strong seizure, with her it was after the bleeding led her to a coma.
I hope she has as good a recovery as I did.
Thank you for the words.

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AVMs are rarely inherited, so if you both have at least one AVM, it would be good to ask about genetics in your case. Inherited conditions that bring AVMs with them can be more complex. (Or just more).

Do continue to tell us how you both get on.

Very best wishes,

Richard

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@afabarbosa Glad to hear your sister is doing better. Big surprise to have siblings with AVMs. I myself had craniotomy last year to remove mine. I have a twin brother (identical) and he has gone through all tests and MRIs, and thankfully he has none.
Having said that, I have kids, I will look into it to see if my Dr will recommend scanning them.

All the best and hope your sister recovers

Francisco

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Hello Francisco!
Thank you for the words. We both really did. In my case it was a congenital cavernoma and in her it was a malformation that perhaps she had developed throughout her life, and what caused the bleeding in her was the rupture of a fistula in this malformation.
Her condition continues to improve, but very slowly.
She can now play games on the tablet, she can use her cell phone to look at photographs and social media, but she still cannot speak or communicate.
Tomorrow she will be discharged from the ICU and will go to her hospital room. We have already hired a physiotherapist and speech therapist, so that, together with the hospital team, we can try to speed up her rehabilitation.
We continue with faith.
Thank you very much!

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I’m sorry to hear about your sister & have great faith that as slow as the recovery can be… it is still a recovery & at some point she will be back to normal… it’s great to read her progress & please keep us updated… God bless!

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Hello everybody! After 31 days in the ICU, my sister was finally released from the ICU and is now recovering in a hospital room.
Despite the improvement in the most critical part, we still have a long way to go. Signs of consciousness are still unstable, oscillating between sleepiness and extreme tiredness. The right arm seems to be the most affected motor part, even when we try to move it she has an expression of pain on her face, with the muscles always tense, the right leg seems less involved, now she can turn to the right side when someone calls by her name on this side of the bed. She still can’t control the isphincter. But despite the setbacks, we remain optimistic and with faith.
Yesterday she managed to permanently remove the tracheostomy, she smiles whenever she hears or says goodbye to the doctor who treats her, she seems to be more attentive during periods of consciousness, but she has not yet expressed a word. Today in rehabilitation, in an engraving with various fruits, she managed to locate what was asked of her. She continues playing candy crush, putting together simple puzzles, but she can’t find vowels among the letters of the alphabet, she can’t find the result of a simple addition like 1 + 1.
We still haven’t been able to reunite her with her two and a half year old son, precisely because of the ICU and now due to changes in consciousness, we are trying to find the ideal moment so that it doesn’t become frustrating for the little one. That moment will soon come.
We know that recovery does not occur as an upward line, there are ups and downs and we are learning to control our anxieties and frustrations.
It’s great to have this group to answer questions and be able to ease tension knowing that there are people who are going through or overcoming situations like ours.
Thank you for listening to me.
We continue with faith.

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Being out of ICU is always a huge achievement… keep up the good fight… God bless!

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Hello everybody! After some time without speaking out, I decided to update the information, mainly to encourage people who are experiencing something similar.
My sister was released from the hospital at the beginning of January 2024, after a long two months of hospitalization. Today she continues to improve, doing a lot of speech therapy and physiotherapy.
The improvement is already significant in the motor part. She now walks alone, only using the orthosis on her foot to provide greater stability, her arm, which also had great difficulty mobilizing, is starting to wake up. Speech continues with some impairment, but now she is able to form sentences and make herself understood with less difficulty.
We know that we still have a long journey ahead, but with patience, persistence, help from competent professionals and a lot of willpower, she is managing to get back to being who she was.
I am aware that recovery is an individual process and everyone has their own pace, having a support network of family and friends makes a lot of difference, faith, hope and optimism also help a lot. What remains for us is that no matter how bad the situation is, overcoming it may be possible!!!

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Hi Afa, It’s indeed a tough time for you and your family. It’s great your sister has a support network that cares. That may make all the difference in the world.
I like the positive signs-- intellectual (playing cards, password code…) and emotional (smiling at doc, connecting with pics of father…) Those are big areas that I suspect will continue to improve albeit, maybe not linearly.
Also, her body is showing signs of recovery. That too may be a bit of a roller-coaster pattern.
I do want to keep things in perspective for you. I’m 64 so in my book she is still young and has plenty of time to get back to fully functional. Keep the faith, Greg

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I’m happy to hear that you sister’s situation is improving. Have you ever checked out of the AVM is realted to Osler-Weber-Rendu disease, Hereditary Hemorrhagic Telangiectasia (HHT) which is a genetic disorder that you inherit from your parents?