AVM deep in the brain stem

Hello, I am here looking for a little help. My best friends 7 year old on Oct 21, 2012 suffered a brain bleed from AVM in her brain stem. She collapsed shortly after and has been unconsious and on a ventilator since then. We are hoping she will wake soon, but Dr's said it will be a long recovery for her. What I am looking for is someone with the same placement of your AVM. I want to know what we are looking at in terms of when/if she will wake and what kind of problems she may possibly have. Thanks

There are 362 members in the ParentsofAVM sub-group on here. I am certain some will post here soon!

Thanks I sure hope so!! Its been a long month since her incident and we have not seen much progress so getting concerned. Thanks so much for all your help!

My best wishes to you and her family.

On the plus side, her age can help in her healing. The brain in a child has a remarkable ability to heal itself.

On the minus side, an AVM in the brain stem is probably the worst place to get one, and if it's bled, that is not good news either, as I'm sure you've heard from the DRs.

There is really no way to know what the prognosis will be. There are some that end well, and others not.

Pls post questions or concerns or just rant here as we've all been in your same situation. It sucks, it's miserable, it's maddening, and even worse when the victim is a child................. We all just want her better NOW, and short of some major miracles, it will probably be a long journey.

The best comment I can offer you and her family is cherish every day, celebrate every minor improvement, get GOBS of support from your friends and family. This kind of tragedy can be devastating to those close to her.

If I haven't butchered my biblical history, I think it was Job when he was afflicted with sores all over his body, his friends simply sat with him for 7 days without saying anything--just being there for him was all they did. Hopefully, you and her family will experience that same support.

Best wishes,
Ron, KS

Thank you Ron, you are correct on what you said. Its the hardest thing not knowing. Especially with the holidays coming and they just want their daughter home.

Not knowing is very very hard. Recovering from an injury like this takes a long long time – I kept trying to remind myself that it is a marathon, not a sprint. I am sure the past month has been among the most difficult imaginable. My heart goes out to your friend’s whole family.

I have a friend who suffered a bleed in her brain stem. I think hers was a slower bleed, and every brain injury is different. So I wouldn’t draw a direct comparison to your friend’s daughter’s situation. But my friend was hospitalized for about 6 weeks, then spent another 3 months at an inpatient rehab facility. She has some permanent impairments, but she’s made an incredible recovery. She just graduated from high school last year. She’s in college right now. She has visual deficits that will prevent her from ever driving. Her balance isn’t the best. She’s an incredible young lady who will always hold a special place in my heart.

She may wake up with limited movement. Once her health is stabilized, it will be up to her to work hard in rehab. That’s what will determine her final recovery. Don’t panic if her recovery starts in a wheelchair, then slowly working on leg strength and balance before even starting to walk. Uneven muscle strength in various parts of her body are another likelihood,

My then-6-year-old daughter suffered a massive bleed in the right side of her brain. She was hospitalized for 3 weeks and spent a month in rehab. Your friend’s daughter has youth on her side. Kids can do amazing things – even against all odds.

I wish your friends a peaceful holiday today. Please tell them to hang in there because their little girl will soon begin the rehab process and will need all the encouragement she can get. Don’t allow them to think beyond today. Tomorrow will arrive, and they can deal with those things tomorrow. There were times we had to take things an hour at a time. Don’t think about tomorrow, next week, next month, next year or beyond. There will be plenty of time to think about that.

Best wishes for your friend’s daughter and her family.

I had an AVM on the outside of my brain stem back in 2006. I was lucky to never have lost consciousness. I had a crainiotomy and it was successful. I still have balance and coordination issues. I had to attend occupational therapy after my surgery. It has been a long road but I am healthy. I do use a walker but I am learning to use a cane. My neurosurgeon is deemed one of the best in the nation. His name is Frank Cullichia at west jefferson hospital in marrero, lousiana. Wishing you the best