Hope after severe TBI : Hello everyone it is my... - Headway

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Hope after severe TBI

Ieasha1990
Ieasha1990

Hello everyone it is my first time posting here. Im not looking for medical advice as I know that cant be given here Just some hope from people who may have been through similar. Just over 6 weeks ago a loved one was assaulted he suffered a big bleed and ended up having to have a decompression craniectomy on the left hand side of his head as they couldn't control the swelling in the brain plus had to remove a blood clot . His glasgow score was 3 when he went into ICU and it now currently stands at 4. He was put in an induced coma for 4 days then sedation was taken away and he has been in a coma himself since which has lasted 6 weeks so far. All i keep hearing from the doctors is the longer he's in a coma the worse the outcome will be if he is to even wake up at all and its just so awful watching him every day as he is. He was ventilated for 4 days but has been able to breath on his own since then so now has a tracheotomy . If you touch his face he moves his head about and he opens and closes his mouth ( if you touch near that area) He also coughs and yawns and has hiccups . His eyes are currently closed but to me it looks like hes blinking underneath as his eyelids twitch every few seconds. He also lets out a big sigh every so often like he's fed up! The nurse took his blood the other day he didn't pull away from the pain but frowned and moved his head about when the needle went in his arm but the doctors don't seem very interested when we tell then about the little movements and things we see all they keep saying is by the MRI he has widespread damage and that he will probably need to be looked after in a care home and they keep asking us if this is what he would want to live like. He had another MRI recently and they have found another bleed which they are treating him for but have said it will most likely cause more damage . I just feel so lost and hopeless right now and hope is all I have left

23 Replies
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Your account of what you are experiencing at the moment is a reminder to me and maybe others of just how devastating it is for loved ones when they are affected by brain injury on this scale. What you have here and on other forums you may use is the opportunity to communicate with people who have either had a variety of types of brain injury, or care for someone who has.

To feel completely 'lost' by what is happening is a reaction that I suspect many or most would feel, you cannot prepare for it.

I believe that whatever feels right to you makes it right. If you have specific questions relating to where you can get practical help with understanding the implications of what lies ahead, there are people here very well placed to signpost you. Similarly, if you simply want to detail what is happening as an outlet for the enormity of what you are dealing with, then here is a safe, supportive place to do so.

Please make sure you do what you can to stay as well as you can yourself too, something that can easily get lost in focusing, understandably, on someone else.

Take care

K

Thank you for taking the time to reply to me. I appreciate it. Its so hard but i am trying to look after myself as best as I can plus trying to be there for everyone else. Im just going to take each day as it comes and stay hopeful.

The best is all that anyone can do. Each day as it comes and staying hopeful ? That sounds a good plan. As Lynd says, we are all affected by the consequences of brain injury here, even if the causes and extent vary and if we are the person with the injury or care for, or about, someone who has the injury.

Don't give up hope. The medical staff are not very encouraging as they don't really know how things are going to pan out.

Still very early days for you both. The path to recovery can be long. Many people on this site have been in your shoes and we share your pain.

Try to rest and eat and look after yourself.

Take it day by day and let us know how you are getting on x

Ieasha1990
Ieasha1990
in reply to Lynd

I will never give up hope. I completely get that and i know they don't like to give false hope so normally paint a bleak picture. Have you had a TBI yourself or had experience of somebody with it? ..Thank you. Im going to take it day by day and i will keep updating on his hopefull progress .Thank you for taking the time to reply to me. I really appreciate it xx

Lynd
Lynd
in reply to Ieasha1990

My Husband had an Hypoxic brain injury due to a cardiac arrest.... lack of oxygen to the brain. He was lucky to survive. He can no longer work due to short term memory loss but he still has mobility and I see small improvements all the time. This happened in August 18.

As you will keep reading on here if you look through the posts everyone is different.

I know you want many answers now but no one can predict.

It comes as a huge shock and it takes a while to come to terms with it all.

The Headway helpline is very good if you need to talk it through. I found them a huge help to me.

Ieasha1990
Ieasha1990
in reply to Lynd

Oh wow that is amazing. Im so glad he survived and is making small improvements. I spoke to headway today they were positive and told me even though nobody can predict what the outcome will be its still very early days. Thank you once again for taken the time to reply to me xx

The medical profession are naturally cautious, brain injury and the recovery process varies greatly from person to person. Do not give up hope, there are many people on this site that have made a good recovery even with a very poor prognosis at the time of their injury. From my own personal experience, hope was all I had in the early days following my wife's accident, it is difficult watching a loved one in such a critical condition, looking after your own wellbeing is so important too, as mentioned in previous comments, I know for me my sleep pattern and my mental wellbeing was not good, my mind was constantly fixated on my wife's recovery. The only advise I can give you is that people do and can make a good recovery despite what the medical profession says. Stay strong in yourself and stay strong with your hope.

Yes i totally get that. I Know its their job. The brain is so amazing. I have been having a good read on here since i joined and there are so many positive stories of people pulling through when they were expected not to. I am exactly the same at the moment barely getting any sleep and my mind is constantly on him. Plus i have 3 little ones and a job thrown into the mix. Im exhausted!!. Im hoping my loved one can be one of the lucky ones who pulls through this. Thank you for taken the time to reply to my message. I appreciate it

My wife had a double skull fracture, an acute Subdural Heamatoma, plus a double multifocal SAH, plus sepsis shortly after her decompressive craniotomy. Her Glasgow scale was 3 and we were even at the point of organ donation. It's a difficult time and I understand where you are at mentally and physically. I wish you all the best and hope for a good recovery

Oh my god. How awful . Just goes to show that you can have everything thrown at and going against you and still pull through. I'm so happy your wife made it im hoping my loved one can to. Thank you for the message of support its nice to speak to people who understand what I'm going through and to hear the positive outcomes. It give me lots of hope

I survived a TBI 6yrs ago, was in a coma for 2 weeks, and had the left side of my skull cut off. This was due to severe blood swelling on the left hand side after severe impact on the right side, it occurred in France. It took me a month or so to get the skull reconstructed in UK, and become properly conscious. It took me a few years to accept I could never be the same person I used to be. I have always remembered there are millions of people worse off than me. Good luck with his recovery, it will take time but he’ll improve. x

Ieasha1990
Ieasha1990
in reply to DTBI

Wow. That sounds awful bless you im so glad you pulled through that. Did the doctors give you a bad prognosis if you dont mind me asking? Thank you for the luck and thank you for taking the time to reply to me. Hes so strong so i believe he will

I was in a life and death situation, naturally I have no memory myself. I believe my fitness at the time was quite significant. What happened to me is no big deal nowadays, I notice issues every day, but there are always people worse off. As you suggest the guys strength could be significant, best of luck👍🏻

I’m so sorry your going through this, I’m sending all my well wishes am positive thought to your loved one I was him six months ago now I’m in rehabilitation taking a few steps in my daily physio session hold on to that hope do not give up everyone’s injuries are different and everyone recovers differently those little signs I did all of that my family kept a journal which I look back on when I need reminding of how far I’ve come those little things are what keep families going

Ieasha1990
Ieasha1990
in reply to Cwar90

Wow that is amazing. Im so happy you are on the road to recovery after going through all of that. If you don't mind me asking how long was you in a coma for? I think that's the part that really bothers me that hes been in a coma for 6 weeks now and the doctors keep saying the longer he is in it the worse the outcome will be if he is to wake at all. The journal is a great idea. The ICU nurses did suggest it to me at the very start but my head was all over the place to actually start one but im going to do one as of today. Thank you so much for the well wishes and for sharing your inspirational story. I hope you continue a good recovery

If you need to talk at all don’t hesitate to contact me our situations are very similar my

Ieasha1990
Ieasha1990
in reply to Cwar90

Thank you so much. I really appreciate that and will most likely take you up on that offer :)

Hi leasha

So sorry to hear about your loved one.. Sending love and prayers to you all... I do empathise my son had severe TBI and bleed on brain and double craniotomy last year after possible assault abroad. He has thankfully recovered pretty well considering the prognosis in the early days he is lucky to be alive. I know how it feels when all you want is some hope to cling onto... Its definately the most emotionally terrifying experiences I ever been thru. When I had no hope I remember looking on you tube at inspirational stories by people with TBI and it gave me the strength to keep hoping he could recover.

He has recovered... Though will never be same again... However he is fully mobile and his difficulties lie I his cognition and speach/memory problems.... I still realise it could have been so much worse... And seen many worse than my son on the ward. My son was in induced coma for 10 days and took another few to come conscious I nearly lost him during that period. There is nothing like seeing someone you love in a coma. Try to keep hoping I asked everyone I knew to pray for him.... (I'm not religious) but it helped and gave me comfort.

I remember one-night asking my son.. "Do you want to live or die? Whatever is for your highest good... I will support you!" it broke my heart to say those words.... However in my heart I knew it was totally out of my hands and I only wanted him to survive if he wanted to survive... And be able to have a decent quality of life.

Its so tough what you are going thru and facing I hope you have support around you... Allow yourself to be however you are.... Its likely to be a full on roller-coaster and numbness at times.... But people do make remarkable recoveries... I hope and pray he does. Take care x

Ieasha1990
Ieasha1990
in reply to leila65

Oh my god. How awful. I can't even imagine how you must have felt especially with him being in another country and so far from you. Im so so glad he has made a good recovery . Im hoping my loved one will do the same. Its funny as i am also not religious but i have been praying out loud lots lately and alot of my friends have been praying for him. I have just come back from seeing him this evening and whilst i was talking to him and holding his hand he squeezed it! He only did it the once but its made me feel even more hopeful. Thank you for sharing your story of your son. Its lovely to hear recovery stories.

leila65
leila65
in reply to Ieasha1990

That's amazing! I remember when my son first squeezed my hand too... Its a good sign. Draw strength from this group and know whatever happens along your path people here really do understand what you are going thru and will try to offer support or advice where possible which can be a great comfort at times. Keep praying it all helps. Bless you all

Hi leasha

Your in an incredibly frightening place at the moment

But it does get better

The brain is a wonderful thing as is your partner strength

No one can predict his recovery even the doctors

Only time will tell

It must be exhausting for you with small children too

Try to get as much help from family and friends that you can

Do worry about Work tell them what’s happened and that you’ll keep them informed

When people say on here about riding the rollercoaster it’s true

Your emotions will be high and low and it will be very frightening at times

Try to rest yourself

sleep is just as important to you as it is for your partner

Please see your own doctor too

I was in your shoes a year ago

And I remember every hill and drop on that ride

My wife is still in hospital a year later but she gets better every single day

Never loose hope

I did a lot of times and it broke me down

It’s a long road

This forum and its members are wonderful some are angels in disguise

Take care

I don't know what to say to add to what others have already said, just to echo their words that the doctors don't really know. I keep reminding myself of something someone said on here, "If you've seen one brain injury, you've seen one brain injury", as every one is different. People make amazing recoveries all the time, against all the odds. You are going through hell, and I wish you the very best, I hope with all my heart your partner wakes up soon, and can begin the path to recovery. Please let us know how things go. xx

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