My stepdaughter is 22, smart, bright and full of life. Just graduated UC Santa Barbara and enrolled to a Law school. It was before October 17 this year. She was rushed to hospital where she was diagnosed with ruptured brain aneurysm, huge bleeding. 5 weeks after coil preceudure and her sculp been removed she was in coma. She had a stroke also at the front lob. I need advise, recommendation for the best treatment what to do with her now. She is not moving her limbs, she is just laying in the bed, she was able to move her head, tracking the eyes, watch TV. 10 days ago she started looking and moving her head and eyes just to one side. Nobody are telling us what we can do. We should start rehabilitation, but she is not participating.
wow. bless her heart!! and yours too for caring. i imagine she's depressed now and can't find a reason to even try to get well. something went loose during my coiling procedure and i lost the ability to communicate or move the right side of my body. it was TERRIFYING but the surgeon fixed it immediately. she isn't fixed, so to speak and it sounds as if she has a long road ahead of her. if no one is giving you the proper information to help her, you need to consider seeking a 2nd opinion. it's inexcusable for a young woman to be lying there w/o anyone offering advice to pull her through this. she will need emotional and physical therapy for some time.
in the meantime, find some inspirational material to read to her. remind her of the gift she is to the world and that where she is now isn't where she's meant to be. find a copy of "i will not die an unlived life" and read it to her. search this site and forum as i'm sure there are many who have been where she is. take a laptop in and read the positive stories of healing to her. also, one of my favorite songs to gift people with when they're having a hard time is "just wait" by blues traveler from their "four" cd. play the song for her. let her know you're not giving up on her so she isn't allowed to give up on herself.
i'm glad you found us here. there are so many beautiful souls here who are nothing but supportive. we'll stand behind you while you fight for her to get her life back.
you could also find out about visits from therapy animals. often, people will respond to animals before they will respond to humans.
a friend of mine had a stroke during her hysterectomy. her skull had to be cut away to accomodate the swelling and she was in a coma as well. she survived and is now back to almost 100%. it IS possible to make it through this - your stepdaughter just needs a reason to want to. i can't imagine being her age and facing what she's facing. she needs to know she can do it and the world needs her.
i'm going to try to link the song i mentioned in my previous post. although i often use it to help people w/drug addiction, the words are powerful enough for most situations.
You all have my prayers simona...!
Remember one thing I wrote you...sometimes the littlest changes, movement, etc., are big things along this journey....! Keep us posted...and I just know you will get lots of help here at BAF...! Fondly, Colleen
Simona,
Welcome, and know you are all in our prayers for recovery of your step-daughter.
Is she still in the initial hospital, or has she been transferred to a Rehab Center?
What did the initial doctors explain to you on the diagnostic and treatment results; and, at the end of those initial five weeks?
Can you explain the scalp removal; i.e. was some surgery done after the coiling?
Hugs and prayers for you all,
Pat
Kathy, thank you so much for your support and the song. We are talking to her trying to support and inspire her, we have a schedule. From 9 to 4 pm her mom is in ICU with her and from 4 to 10 pm me or my husband. We need to find balance between hospital and work, it is not easy. I am reading a lot of stories on BAF, seeking the answer to my questions. Those people and their stories give us the hope that our Jacky one day can start moving, talk and smile. I missed her smile so much.
Pat, it is already three months. We started from ICU at San Joseph Hospital in LA, they did coiling to stop initial bleeding, then she had a stroke, balloon angioplasty at three main arthery, then because of swelling they have to remove part of her sculp on both side. She was out of ICU for 2 weeks at subacute where we fight with high heart rate and temper. then suddenly before Christmas we notice that she keeping her head and eyes just to one side. We asked every doctor, but nobody took us serious, until neurologist said that it could be very serious and from subacute we went to ICU of totaly different hospital, when she became stable they transfered her to San Joseph again to put back last part of sculp. She is in ICU after surgery. Probably next week they will transfer us for rehab. But the place were we have been before doesn't provide the good physical therapy, we could not get the speech therapy for her for 2 weeks. They don;t have the good neurologist to supervise her. She is not participating , not following command, so the real rehab is not for her now. When she would be ready we can take her to Ceidar Sinai hospital, they have a good rehab, insurance covers just one or two weeks. she needs to be able to participate 3 hours.
Contact Dr KIm Nelson at NYU he is very knowledgeable. I am sure your doctors have heard of him, if you want his contact info please let me know and I will get it to you.
Thanks,
mike B
Mike, thank you. I think Dr.Kim is neurosurgent, we need the consultation from a good neurologist. Jacky's surgeries are over. We are seeking advise how to rehab her if she is not responding. We do passive motion with your limbs, massages, it's not enough for 22 years old.
He will refer you where you need to be he is really good and knowledgable it cant hurt to call and try. It is up to you let me know if you need his info.
Thanks,
Mike B
Thank you Sue,
Last Thursday they transferred Jacky to acute hospital long term for some rehab. She has a severe spasticity all over the body, so it's very difficult to do any physical exercise with her, she still doesn't follow the command and doesn't move any limbs. She has her shoulder dislocated from socket. The hospital stuff trying to help, but they don't have a such experience with neuropatient. They supposed to start the speech therapy. I keep you posted on any changes in Jacky's conditions.
Sue,
As of today Jacky is in the rehab. hospital already 3 weeks. It's a very slow progress, like a baby steps. Do you remember your time at rehab? When were you able to sit, swallow, breath on your own? As much as you can remember this period and your progress, please let me know. She is not responding to our or doctors commands.
I am reading again and again your reply, it's so similar with Jacky's situation.