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AVM Survivors Network

Sister had AVM burst 1 year ago


#1

Hello my sister had an unknown avm burst 1 year ago. She was rushed to our local level 2 trauma center where she was intubated, and ended up being driven about 2 hours away to a level on trauma center in a bigger city. They had to do a permanent craniotomy to allow the swelling in her brain to go down. She was in that hospital for about a month and brought back closer to home to help her get off her tracheostomy.

After about another month she went to a rehab facility to try and get better, she wasn’t able to speak and could hardly move her arms, and her ankles were in almost extreme plantar flexion. She was discharged from that facility because she was not making much progress and ended up going to the er because she had some upper respiratory infections.

About 4-5 months in she was taken to a nursing home type facility (she is currently 21) to be taken care of closer to home where she has made some progress. She is able to speak some words and sentences but she is still unable to walk. She is still currently there but my family and the staff at the facility she is in are trying to get her sent to Shepherds Center in Atlanta. They refused to take her because she was aggressive towards people. She still is but that is only because people try to get way too close to her comfort zone.

I am posting this because I was wanting to know if anyone has been in the position my sister is in or if anyone has known someone that was in this kind of situation and what could possibly help them get better. We try talking to her all the time but she hardly ever wants to talk to us, and she has been laying in a bed a majority of this past year. She gets into a wheelchair but that is maybe up a 2-3 hours a day if we’re lucky.


#2

Hi @Kench

@Charles3 sounds in a similarly difficult position to your sister. Very best wishes,

Richard


#3

Thank you, I appreciate it. Hopefully I can get a reply to see what his circumstance is


#4

Charles is home as of dec2. The hospital basically dumped him on me and didn’t order any help for me. Now they tell me their not his doctor so I can’t get anything from them. Food almost ran out as the inner cannula also. I have him in my dinning room in hospital bed and using table for supplies. I do have appointment with my own doctor to get him set up and referrals if needed…He doesn’t wake up at night for the bathroom. Can’t find thick bed pads to soak up urine. He can move one side and other side started to move but in so tired ,I haven’t been able to work with him and he is stiffening up. He does ring bell daytime for bathroom. Still has trech,insurance sent me a compressor that I could paint a house with but can’t run that next to his head. He seems to be breathing fine. Coughing up just couple times a day and clearing his throat. My worry this week is two doctor’s appointments and a van being sent from insurance. I hope we make it their on time. Not sure what to do when he needs to use restroom. To heavy for me to get off toilet and he needs arms. Sorry just venting. It is good to have him home but I’m worried he is getting worse without therapy and his skin is starting to break out.


#5

Hi @Charles3

Sorry Charles seems to have been unceremoniously and unsupportively sent home. It does sound like you need to talk to your own doc and identify what support he needs and where to get the right bed pads etc from.

Are you expecting to do all of Charles’s care yourself, or will you be able to arrange some nursing care? I mean to help you at least a little at home.

Best wishes, Richard


#6

Dear Caregivers,

I am so sorry for both of your situations. My daughter was 19 when her AVM burst and was in a facility for a year. She went from the hospital, to a Long Term Sub-Acute, to Acute Rehab and then to Post Acute. When we came home she still required a lot of care and still does. I feel for you that your family member were sent home without a lot of support. My daughter did become aggressive at the last facility she was in. Her speech was and still is limited and so in retrospect I believe it was her way of saying stop. Just like you said, when people get too close she doesn’t like it. I wish there was a magically formula I could give you as going to Shepherd would be so good for your sister. I can tell you are already giving her space so that is a good idea. Make sure everyone else knows what her likes and dislikes are. Also, we would give our daughter choices about what she was going to do. The therapist would write out on the board ahead of time what was going to happen in the session and then my daughter would line it out when finished. Another idea was to give her a timer so she knew when the sessions were over. My daughter would hit people including us and because she was quite strong would hold on to the wheelchair and not let herself be stood up or latch on to a table leg with her legs and not let go. It was very difficult. We would always use a kind voice and not get alarmed when we would pry her hands off of things. In time she has gotten so much better. So, lots of choices, kindness which I can tell you are already doing and a schedule. Maybe that will help. Feel free to ask me anything else as we are 4 years into this and my daughter has made a ton of progress. But she has a long way to go. Where was your sister’s AVM located?


#7

I am so sorry to hear about that. I can’t believe they would do something like that to someone incapable of taking care of themselves. I’m praying for you and Charles so that he can hopefully get the help and care he deserves.


#8

Thank you for the insight as to what happened to your daughter. My sister had her bleed near her brain stem.

Has your daughter been out of rehab for the past 3 years then? Is she able to walk or stand with help? My sister is unable to walk but she can stand with help and pull herself up off her bed if someone is holding her arms. My sister alexa will probably be going to a center in Illinois which focuses on patients who have aggressive tendencies so I’m hoping this will help her.


#9

My daughter’s AVM was near the brainstem too. She has been home for 3 years and she still continue to get therapy. She needs help to walk as her balance is off. She uses a walker to walk and one person assistance. She keeps getting stronger so it is all worth it. Keep at it every day. I know its exhausting but doing extra work with her while she is in the nursing home can help her. She is young and I pray for you all. Let me know how it goes.


#10

Thanks for your prayers. Went and saw primary doctor for first time. They did blood work as I asked for low potassium and called his doctor at the hospital for his trech. They called me and scheduled appointment for January 13. Long time to wait but accepted it. He ordered the scripts he has been taking. Finally Charles made it two days now without wetting the bed. Great improvement. My concern is he seems to be stiffening up as I can’t work with him as much as I did before because lack of energy. I will be calling insurance company Monday and try to get a hold of social worker.


#11

I have taken Charles to my own primary doctor and he did rewrite all is scripts and for a nurse aid. Apparently he was suppose to fax over the script with info . So I will call no day to talk to the staff their and either have doctor rewrite script or bring it back in on the 29 when he goes back for his second appointment. They called his doctor who did his trech care at the hospital and scheduled an appointment for January 13. So it looks like not much will E done or help for a few more weeks.


#12

Thank you so much for your insight. That is awesome she is able to walk with assistance though! I’m hoping my sister can start doing standing exercises to help strengthen her legs. I am curious though, is your daughter always tired or was she always tired? My sister always seems to be very tired throughout the day. Also what state are you located in? My family and I are in Indiana, I doubt that we are very close to you but if you’re close enough I’m sure they’d love to message you since they don’t know any other parents that have gone through anything similar to what they are going through.


#13

I am sorry to hear that. Are you located in the United States? I can’t believe they wouldn’t try to get help for someone who can’t take care of themselves, or to assume that you’d be able to care for him completely by yourself.


#15

Hi Kench, my husband had a brain stem AVM rupture on 3/18/16. He still sleeps a LOT but when he is awake he is able to follow commands and carry out spontaneous movement. Two things have helped increase his energy: changing his formula (he cannot chew and swallow well enough to eat and drink) and taking him off of an anti seizure medication. He never had any seizure activity and there is no evidence that it is beneficial beyond 7 days post bleed. (Our friend is a pharmacist and spent HOURS researching this and it was further affirmed by his rehab doctors. I don’t know if either of these apply to your sister. It was also recommended that I keep my husband in a quiet environment in the early months following his bleed. We went from a hospital straight to a subacute rehab. He had a shunt failure and I ended up taking him home and caring for him myself. He started getting much better at home. Before we came to this rehab he was sitting up unaided on the side of the bed and standing for a minute at a time on a walker. We are now 9 months out from the bleed and there have been a lot of ups and downs and scary times. I hope that your family will be able to find your sister a rehab facility that will meet her needs.


#16

Hi there. Did your husband require further surgery after the initial bleed? Does he still have a trach?


#17

Hello sorry I haven’t been on here for awhile. I will look into what medications my sister is on. I know they prescribed her zoloft for depression but I’m not sure what else other than BP medication. Is your husband speaking very well?