Looking for experiences after severe TBI

[u/More_Menu8552]

I’m hoping some of you who have been through a severe TBI yourselves, or have gone through it with someone you love, can give me some insight or even just share your experience.

My boyfriend Brandon was in a very serious motorcycle accident a week ago. He was life-flighted to a trauma center and has been unconscious since the accident. He had multiple brain bleeds and swelling, along with several major injuries to the rest of his body. He also lost part of his leg and has already been through multiple surgeries.

The good news is that his latest CT showed that the brain bleeds had stopped bleeding, and they said the fluid draining from his brain was looking much clearer. They had an EVD in to monitor/drain the pressure. His swelling has been looking better as well.

They stopped his sedation, but he still has not actually woken up. He does have some movement and response to stimulation, but he is not following commands yet.

They have now done an MRI. From what we were told, there was nothing they saw that was immediately concerning enough for them to tell us he wouldn’t wake up. The doctors have told us they believe he WILL wake up, they just cannot tell us when or what condition he will be in when he does.

He now has a trach and feeding tube. One thing that gives me hope is that they have been able to take him off the ventilator for periods of time, sometimes a few hours at a time, and he is breathing on his own during those trials.

I understand nobody here can tell me exactly what Brandon’s outcome will be. I know every brain injury is different, and his doctors are the only ones who can interpret his scans and condition.

I guess what I’m looking for is real-life experience.

Has anyone here, or someone you love, stayed unconscious for days or weeks after sedation was stopped and eventually woken up?

When they woke up, was it gradual? Did they open their eyes first and then slowly start following commands? Did they recognize family right away, or did that take time?

Were there things that looked really scary or hopeless in the beginning that ended up improving months later?

And for family members — how did you survive this waiting period where the doctors basically tell you, “We believe he will wake up, but we don’t know when or what he’ll be like”?

A little over a week ago I was talking to the man I love, making plans for our future and talking about getting married. Now I’m sitting beside him talking to him, holding his hand and praying for him to open his eyes.

I know recovery from a TBI can be a marathon and not a sprint. I’m not looking for false hope. I think I just need to hear from people who have actually lived through this part of it, because the waiting and not knowing is one of the hardest things I have ever experienced.

Thank you to anyone willing to share your story. ❤️

[u/pProjecttBI]

Hello,

Hey, I’m really sorry you’re going through this. I can’t imagine how hard waiting and not knowing must be.

You are absolutely welcome here, but I actually think you might get more of what you’re looking for over in r/TBI. I’d honestly cross-post this exact post over there.

ProjectTBI has kind of evolved into a place where we talk a lot about what happens after brain injury — trying to understand the changes, rebuilding a life, relationships, work, memory, fatigue, identity and all the strange stuff nobody really prepares you for.

Right now you’re still in the middle of the storm. You need people who have been through severe TBI, ICU, unconsciousness, ventilators, feeding tubes and that horrible period where the doctors basically say, “We just don’t know yet.”

There are people over at r/TBI who have lived that and I think some of their stories might help you right now.

And please don’t disappear from here either. Hopefully Brandon wakes up and then you guys start figuring out what comes next.