Hello everyone. I am 28 years old and I am the daughter of a mother who had an AVM rupture back in April of 2017. It has been such a long journey; one which we still do not know the outcome of. On April 2, my mom’s AVM ruptured, which caused 2 blood clots, leading to a stroke. She was immediately unconscious and had to be rushed to the emergency room. After the Neurosurgeon received the results back, he said she had a very severe bleed and that the AVM was located on her left-side, where the speech and movement portion is located and told us that we either perform the craniotomy, or we let her go in peace. He urged us to opt out of surgery and told us it was very likely she would become a vegetable because of how severe her bleeding was. After these words, our family decided to move forward with the surgery. She was in a coma for a couple days. A few days later, she slowly began to show movement on her left side and had a trach and feeding tube inserted. After a few weeks, we were able to get some words out of her when the passy muir was inserted and we were very hopeful that her speech was still there. We also noticed only movement on her left-side. The hospital then discharged her to a respiratory hospital and 3 days in, she caught an infection in her brain and had to be transported back to the hospital. The neurosurgeon had to open her back up and wash out the infection. Two weeks after this surgery, they noticed that the swelling wasn’t going down and they had to operate once again, but this time, they would wash her out and insert a drain in the back of her head so they could extract the excess fluid. After a few weeks, we were finally cleared of the infection and could now work on getting her better. She made great progress with her swallow tests and was able to get the trach and feeding tube removed. She was then sent to an acute rehab center in the hospital, where she began physical/occupational/speech therapy. She is still paralyzed on the right, but shows significant cognitive ability to understand, but currently has speech aphasia and repeats words constantly and cries quite a bit. There are moments when her speech is in point and she says exactly what she wants, but this is less than 15% of the time. She can follow directions very well, but is very hard to figure out what she wants sometimes. I have been there with her everyday since the beginning and am very good with knowing what she wants, but I struggle with when I’m not with her. My dad and siblings get frustrated with her and lose patience when she cries because they don’t know what she wants. She is now home and I’m pretty much her only caretaker because everyone else has already checked out.she only trusts me to get her out of bed, take a bath, and change her diaper. I am in this for the long run, but I have no help and it’s very exhausting for one person. I’m currently doing her physical therapy, speech exercises until these programs begin with the in home healthcare. She is still paralyzed on her right side and we were given a Lift machine to get her out of bed. We’ve made progress and are now able to pivot her out of bed into the wheelchair without the Lift machine. Her right arm is always in extreme pain and she treats it like her baby and is very protective of it. I’m still hoping for the best, and I know we have a long road to recovery. I’m hoping for anyone out there who has gone through something like this and could share their story. Also, if anyone has any resources to how I can get aide for her, I would appreciate it. We’ve already been told she won’t be able to get Medi-cal, so I need to know if I have any other options to help me take care of her at home when I’m at work. Thank you all.
Hi Jessica, I’m not from the US and cannot advise on your options but wanted to just perhaps give a little hope and say that when dealing with the Brain even the doctors and specialists are not 100% right all the time, Your mother could surprise everyone, Always keep hope in your heart and I wish and hope truly that she continues to make progress, She may cry often at the lack of her own progress and also she will not know what has happened to her, I remember waking from my bleed and the first thing I said to the nurse was call my wife tell her where I am and why, I had no idea ! but was too tired and in pain to care at that point (Right after an emergency craniotomy) . Take care and I’m sure the community will help out with good advice for you. I pinned this post so that it will be at the top of everyone’s page for a week.
Martin.
Jessica much love to you for being there. I am on the other side meaning I have moved in with my daughter while I have my surgeries. Don’t know what I would do without her although every day I can’t stop thinking about I don’t want to be a burden. We will all get through this. Thank you for being there for her.
Kell, I’m sure your daughter has told you this already but you are not a burden and I bet looking back on this hard time she will tell you that it was good to be able to care for you as you did for her at one point. parents are irreplaceable, as children we may not tell our parents often enough but we all need our parents for various reasons 
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hi my names karmen and my boyfriend had a rupture on his right side april 15, 2017. he wasn’t conscious after his surgery it took him a few days but his left side he wasn’t able to move at all but just yesterday he began moving it and just a little not very much but it is movement. he still has a trach in and a feeding tube he can’t speak but i do know what he wants just as you know with your mother. i am 18 and my boyfriend is turning 21 monday. this is a very difficult situation especially if your alone i can only imagine what it feels like but with time things will come back maybe not all but hopefully some. okay he is being transferred to another rehab facility i dont know when we will be taking him home but if you need anything or someone to talk to you’ve come to the right place.
Hi jrico:
Welcome to our group. We are here to support and encourage you. Your Mother is blessed to have a daughter who is in her corner 100%. Although she may not be able yet to verbalize her thoughts, deep down, I think she knows that you have been her angel. My AVM ruptured in 2014, followed by coma, confusion and all things foreign to me. My angel was my Husband. Because of him, I was never afraid even though I didn’t know why I was in a hospital. Every morning when I opened my eyes, he was there, so I felt comforted. Little by little, the fog lifted. Eventually, I began to understand all that I had been through and all that my Husband went through in caring for me. It’s been almost 3 years since my rupture, and I still thank him for loving me and for guiding through my long recovery, and for the tough love that I needed when I got pissy with him. Stay Prayerful and Patient with your Mom. When she wakes fully, she will want to see your face and give you a hug for being there with her. AVM’s tend to hang around a lot longer than anyone wants. They won’t be rushed. I pray that your Mom makes steady progress on her journey, and I pray that you take every positive step with her. God Bless you both.
Sharon D…
You might try social security for money. I’m not sure of your mom’s full circumstances. It would be nice to have resources to hire a caregiver to help you. You must be very tired. My husband and I care for our daughter and it is exhausting and very emotional demanding. She was able to get SSI and In home support services as she had never worked, she was 19. It’s worth a shot. We live in California and I imagine every state has their own programs.