Minimally conscious state

[PaulaWills]

Hi, I'm new to this site, does anyone have any experience with minimally conscious state. My husband suffered a TBI on 23/12/15 & has just undergone a SMART assessment. This has diagnosed he is in MCS. He is aware of us, moves his arms & legs , tracks us when we move around his room, cries when we tell him personal things & does the occasional movement to voice command. We are also sure he us trying to speak as he groans quite a lot. Has anyone been in / experienced MCS & how long did it take to emerge ? Thanks, I'm worried sick as this is not the result we were expecting.

[randomphantoms]

Formerf1doc.wordpress.com. Something I came across yesterday when looking for something else discusses mCS after being asked a question about Michael Schumacher.

All I can say is never say never.

Lots of love n hugs to you and all the family

Xoxoxoxoxoxoxoxoxoxo

[PaulaWills in reply to randomphantoms]

Many thanks I'll have a look X

[randomphantoms in reply to PaulaWills]

I meant to say to ring the Headway helpline as well. All the details are in a pinned post on the side of this page.

Love n hugs

Xoxo

[PaulaWills in reply to randomphantoms]

Thank you xx

[MXman]

Hi Paula,

Yes call the Headway helpline they are very good. Nick Xx

[PaulaWills in reply to MXman]

Thanks Nick I'll give them a call to tomorrow xx

[Hidden]

My partner is in a MCS, he was vegetative for 9 months and has been MCS for 4. Every time I see him I get him to do something new. This last month he has started answering questions by nodding/shaking his head and shrugging his shoulders. Last week I asked him if I was okay if I left for an hour and he shook his head and frowned - first emotional response. What I'm trying to say is you will only ever get as much out as you put in, and that everyone is different, and this is our story as an example. I wish you and your husband the best xxx

[PaulaWills in reply to Hidden]

Thank you for sharing you're experience X I will try introducing new tasks from tomorrow. We've had a problem with him being on the wrong type of feed, but since this was rectified 2 weeks ago we have seen slightly more movement in his right side whereas before everything was on his left. We know we have a long journey ahead but each small step is a step forward. Best wishes to you & your partner & thank you xxx

[yemmahabou in reply to Hidden]

I am really pleased to hear that there is progress albeit slow. Hold on in there. It started therefore it will carry on. My daughter has been in a vegetative state for 2 years and I am still waiting for that little change. It is very slow and heart breaking..........

[Nawalsaleh in reply to yemmahabou]

How is your daughter now, any improvement? My daughter is in same condition.

[yemmahabou in reply to Nawalsaleh]

I am afraid there has been very little improvement although I sometimes get the feeling that something is happening (the way she looks at me !) Maybe it is wishful thinking but who knows ? It has been 2 1/2 years but I am not giving up. Are you seeing any changes in your daughter ?

[Nawalsaleh in reply to yemmahabou]

Until now I don’t see any improvement in her condition, sometimes I have the feeling that she hears me and knows I’m with her as when I talk to her, heart rate goes up and have a seizure. Sometimes I become strong and try to think positive, but then I feel sorry for her and collapse . It’s heartbreaking to see my beautiful daughter in this condition.

[yemmahabou in reply to Nawalsaleh]

Yes it is really difficult to always be positive particularly when it has been going on for so long. Like you I think that my daughter can hear. When I walk into her room and she hears my voice, she opens her eyes and seems to be looking at me. What happened to your daughter what caused her to be in MCS ? My daughter has viral encephalitis (so the doctors say !!!)

[Nawalsaleh in reply to yemmahabou]

My daughter had gastric ulcer, she was vomiting when I rushed her to the er , they put her on fluids and took x-ray. She had some kind of infection on the right lung so the transfered her to the ic . She spent 3 days taking antibiotic which didn’t work because her stomach was full of like coffee colour liquid . I begged them to insert ng tube to empty stomach but they waited until her oxygen level and heart rate dropped . Only then they put her on ventilator and induced coma. Every time they try

to wean her off ventilator, she could not breathe on her own , she was as diagnosed with ards . When they reduced midazolam, she kept having seizures for 3 days until they increased midazolam and gave prpfol . After one month they stopped sedation but she didn’t wake up. Lately she started opening her eyes but no movement. My heart is broken and I have panic attacks . I feel sorry for her and I’m not satisfied with the icu doctors delay when she was first admitted.

[yemmahabou in reply to Nawalsaleh]

Hello Nawalsaleh.

I was wondering how your daughter is now. Has there been any progress ?

I am still desperate about my daughter. There is hardly any improvement.

She opens her eyes more frequently and I know she can hear me but there is still

no recognition. I am trying to get the Consultant to agree to a scan to see if there

is brain activity.

Has your daughter improved ? Do you help her with stimulation ? What sort of it do you do with her ?

I am so desperate !

[randomphantoms]

Hi Paula

Just found a site called healthtalk.org. if you go to the tab people's experiences and search for minimal conscious state you will be able to find out more.

Please remember we are here any time you want to get things off your chest or need some virtual hugs.

Love n hugs

Xoxo

[PaulaWills in reply to randomphantoms]

Thanks a lot X it's comforting to be able to talk to people with similar experience xx

[cat3]

My ex-husband was in MCS after a Subarachnoid haemorrhage in 2012. As his second wife was next of kin, neither our son or daughter or his own mother were allowed input into his care. They visited regularly and tried to stimulate him with photos, music, banter and memories, to which he responded enthusiastically.

We all believed Geoff's condition would be improved by the ability to speak, and on the occasions when I visited him in the care home I tried encouraging him to mouth words or just sounds. My son and daughter approached his consultant to request more speech and physio therapy but were told it was now the responsibility of his GP.

They had meetings with his GP but his wife constantly blocked them saying their dad was quite happy 'In his own little world', and she was the one with power over such decisions.

The consultant at Salford Royal, where Geoff's brain surgery was performed, had planned for him to transfer to Walton hospital, renowned for its rehabilitation successes, but that was also blocked by his wife. So he was taken to a care home close to his home where it was more convenient for her to visit.

Sadly he died last year from pneumonia as a result of a feeding tube injury.

Please Paula push for all the therapy you can get for your husband. We all believe that if Geoff hadn't been denied the speech & physio therapy he so deserved the outcome might have been so much more positive. There are some wonderful stories of recovery from brain injury.................all as a result of proper rehabilitation.

Don't give up hope m'dear ; phone Headway on Monday on 0808 800 2244 for more information. Sincere best wishes, from Cat x

[PaulaWills in reply to cat3]

Hi Cat

That is so sad to read & must of been so hard for you & your family knowing things could of improved but weren't allowed to happen. Disgusting ! We are lucky that he is currently in Walkergate Park neuro rehabilitation centre and just finished a SMART assessment. However, he has to be transferred to a nursing neuro centre until he emerges & one option is Headway approved. Thankfully Walkergate liase with the nursing neuro centre and will still monitor him every 3-4 months and he can be re-referred for more intense rehab once he fully emerges. But I will make sure he gets the therapy he needs whilst in the care centre . Thank you so much for responding to my post & wishing you the very best xx

[Hhodg]

Hi Paula Have you an update on how your husband is now? My husband is 5 months into the same journey and there is little information on how people progress . I hope things are better for you both now.