Anyone come around from a wakefulness and sleep state after head injury?

[Turquoise_empowering]

Hi, I’m new to this community chat. My partner suffered a catastrophic brain injury going head first into a horse box when he was on his motorbike. He has had a craniectomy to allow his brain space to swell and had to have surgery immediately due to bleeding on the brain. He was in an induced coma for a month, then when they took him off all machine support he is now in a wakefulness and sleep cycle where he is unresponsive for 7 weeks now. It’s heartbreaking not knowing if he is still in there and he will come around or will he be like this forever? Has anyone experienced someone coming around and waking up from this state over time?

[Leaf100]

Hi Turquoise,Welcome to the site.

I am so sorry you and your partner are going through this. Scary days full of uncertainty.

Your best bet for the information you seek is to phone Headway if you are in the UK, their phone number is in the pinned posts on the right.

You may also ask them what resources and supports are available for family members, and if they have some sort of orientation as to what to expect given your partner's situation, types of doctors to consult, etc. They may not know, and what they tell you may not be what happens. But,it is something,and a kind of framework that has its uses.

There is also all kinds of info online,through Headway itself or brainline.org.

Some docs and therapists are truly amazing, and some are not helpful. Brain injuries are not well understood so there is a lot of variation out there. That is where Headway can be so helpful - they know the players and resources in your area.

And sometimes people here have helpful ideas cause they are on a similar journey.

We're here for you, so please feel free to keep us posted on what happens, how you are feeling, etc - you can be how you are here. There are partners, parents, children, and the brain injured theselves. So, you will get a lot of different perspectives. No one's answers will be an exact match for you, but you will get ideas and know others here get it.

Nice meeting you

Best wishes

Leaf

[cat3]

So sorry to hear of your partner's injuries Turquoise, and the obvious anxiety for you at this time. Unfortunately there are no precedents to use as indicators of progress as every brain injury is unique to each patient, so two identical injuries might have totally different outcomes.

Therefore in brain injury cases doctors are reluctant to attempt a prognosis, not because they're hiding anything but from a genuine inability to predict an outcome. We were fortunate in having an engaging and transparent consultant who assured my family that the 'Wait and see' route was the only one available but 'There should always be hope'.

The agonizing wait for loved ones is always sad to hear of, but I've seen many serious (even hopeless looking) examples of brain injury on Headway over the years with positive outcomes. I truly hope your partner's outcome is one of those...

Sincere best wishes, Cat x

[HubbyOfSeriousInjury]

It sounds like we are on very similar timescales.

My wife had a traumatic brain injury (and many other physical injuries) 11 weeks ago. She has been out of a coma since the end of September and has sleep/wakeful cycles but is not really responsive in any meaningful way. Like you it's heart-breaking to see her this way and to not know what the future holds. Sorry I can't give you the answers you want but you are not alone.

[Turquoise_empowering in reply to HubbyOfSeriousInjury]

Sorry to hear you are in a very similar situation. It is mental torture watching a loved one go through something like this. They can’t seem to keep his brain swelling under control amongst many bugs he keeps having. It’s horrific. I really wish you have a good outcome from the trauma you guys are going through.

[HubbyOfSeriousInjury]

Can I just update to say that my wife has definitely made progress recently, so it's definitely possible even after time.

About three weeks ago she started to make what I called more deliberate/precise movements. Just simple stuff like moving her bedsheet around when there was a draught. Or on another occasion she took her nebuliser mask off and put it down at her side i.e. she didn't just bat an annoying thing off her face, she deliberately removed it and placed it.

Shortly after this the nurses told me they'd had a few words out of her, mainly Yes and No or words that they couldn't quite work out.

Fast forward to last week and I go in for a 'multi-disciplinary' meeting and they start by saying that she's made such marked progress in the week or so before that they were having to reset their assessments and goals. She had shown such awareness of self and objects that they had concluded that she was no longer suffering from a disorder of consciousness. They did caution me that she will have significant cognitive issues, confusion and almost certainly post-traumatic amnesia.

Still she hadn't spoken to me though until Saturday when I was showing her some photos including one of the two of us on a recent holiday. It was only two words but she told me that it was 'us' in the photo which meant a lot.

Anyway, I just wanted to let you know that there was hope/progress and wish you well, particularly at this time of year.