Hi, my name is Kelly and my sister had her first AVM diagnosed and operated on May/June of this year.
She is 49 years old and had a seizure while driving. The MRI showed a tumor the size of a golf ball in her right parietal lobe. They scheduled a surgery date to remove the tumor and when they did, they discovered it wasn’t a tumor, but an AVM that ruptured as soon as they opened up her skull.
They did a successful evacuation and she has been rehabilitating with speech therapy for short term memory issues since then. She was set to return to work today (actually) but on Saturday I called her to see how she was doing and she couldn’t even talk to me on the phone and was making no sense.
I was 3 hours away from her at the time and called a friend to check on her and they took her to the hospital. She has a second AVM in the left temporal lobe and is currently in the ICU. The hemorrhage is large and her brain is very swollen, however, to the amazement of the neurosurgeons she is still breathing on her own and is not comatose. She is incoherent most of the day, sleeps a lot and is very agitated if she is awakened, but she can still be roused. They tell us she is probably going to have huge deficits from this bleed and will most likely be blind in her right eye and have right sided paralysis. I know they have no way of knowing for sure, so I remain cautiously prayerfully hopeful that she has a better outcome.
They do not want to do surgery because the bleed is surrounded by brain and they don’t want to cause permanant and irreversible paralysis.
They tried to put a feeding tube in her today but she ripped it out. Every day they do a CT and see no change…no improvement, no worsening. Just the same. Tomorrow they are going to do an MRI on her to try to get a better picture of what is going on.
She is still critical. I feel overwhelmed because I know that she won’t be the same person she was when this is all said and done with. I am actually feeling grief for her and the parts of her life and her freedom that she is losing.
I have no clue what options are available to help her and would love to hear if anyone has any suggestions or advice. She has two more lesions on her brain that are not ruptured yet. They are so deep in the center of her brain that they cannot operate. They do not know for sure that these are AVM’s (the arteriogram didn’t come back with the answers) but I strongly suspect that they are.
I don’t know what else to do for her…I feel helpless and just need to hear/read some encouraging words.
Thank you Lianne and Stacey for your words of encouragement. I do talk to her and encourage her as much as I can. Sometimes I just sit with her quietly and try not to awaken her, as she really gets quite agitated when she is bothered. But I always hold her hand so that even during those times, she feels someone present with her who loves her.
Kelly, I am so sorry that your sister is going through all of this! I will keep her in my prayers. You’ve come to a great place for support…there are several relatives of AVM patients, as well as survivors to help answer your questions here.
So sorry about your sister, my brother has an AVM also, we feel so helpless also. He is doing OK - but his life has also changed so much in the past three years. Keep reaching out for help!!! don’t give up on her. But, remember you can only do what you can do - it is in Gods hands. It is a fine line between helping and going crazy. Hugs.
Thank you everyone for your kind words and encouragement.
Judy went downhill fast tonight and stopped breathing on her own. They had to rush her in for emergency surgery to evacuate the bleed and she is recovering in ICU again tonight.
They did a decompression craniotomy on her to try to decrease any pressure from swelling from the surgery and hopefully her recovery will go as well as it can at this point.
I am beat, it has really been a long and emotional night.
Kelly, I am so sorry to hear what happened last night. I am glad tha they got her into surgery right away and decreased the pressure in Judy’s brain. I know that you want to spend all your time with Judy, but please make sure that you get enough rest too, Kelly!
Thank you all for your prayers and positive thoughts
I got up today and went to Judys apartment to get some important paperwork that we need to file disability for her. When I got there I found that she had thrown up all over her bed and pillows and I had to clean that mess up. I ended up doing laundry for a few hours for her and cleaning out her fridge and getting rid of spoilable foods, etc…
Then I packed some stuff for her that she will want if she gets out of the ICU.
Afterwards I went to the hospital for a few hours. She is OK. Not good, not bad, just OK. She is still intubated and has her central line, so she has a lot of things hooked up to her. They did not have her sedated today and she was very sleepy. She can be roused but she gets really agitated and trys to extubate herself, which is very stressful to watch.
She is going for a CT of the head and body tonight so I am not sure how she will handle all of that activity. She is still not following any commands and they told me she is receptive asphagia (sp?) which I guess means that she doesn’t process the things people say to her so it sounds like we are all talking greek and she can’t do anything we ask her to because she literally doesn’t even know what we are saying to her.
That is about all for right now, its just going to be a slow process from everything I gather.
I just want you all to know that I am taking breaks from the hospital and getting things done in my own life as well. Ironically, my brother was laid off last week and so he has been a god send by sitting with Judy during the morning hours, I sit with her during the midday hours and my other sister sits with her in the evening hours and we all leave her to the nurses at night.
I do realize that this is going to be a long road… no sense in burning myself out at the beginning. And honestly, I feel guilty saying this but I know that now while she has 24 hour care in the ICU is the “easy” time for me on a personal level. The real work will be helping her and caring for her when she is home.
Kelly, This must be so overwhelming. I just can’t imagine how you are coping. Just take it one day at a time. You are right to use this time to look after yourself. You will be of no use to her if you aren’t strong.
Take care. I will be thinking of you.
Kelly
My thoughts are with you. Like you said no one knows for sure what type of deficits she will end up with. I can tell you, however, that I have several friends that worked in ICU. When my sons AVM ruptured and I was so scared of the future they told me to never give up hope. They said they had seen so many cases where they thought there is no way this person will ever walk, talk or even make it through the night and they would come back to visit walking and talking. They told me just know it can sometimes get really bad, but the brain can surprise you and to have faith and hope. I hope you and your family the best during this time.
