My partner, the love of my life had an AVM rupture and bleed. The bleed was large and they operated to remove a clot that formed along with removing the AVM. The AVM was in the right hand side motor cortex and after it was removed there were stroke like symptoms in the area. His brain swelled and they had to remove part of his skull to reduce pressure. The pressure made the damage spread. An MRI yesterday shows a lot of damage to the midbrain and the thalumus. The rest of his brain stem is okay and he opens his eyes on his own etc. The doctors called me in to tell me they want to end life support because they say there is no hope of any quality of life as the damage is to an area that all the rest of the brain activity has to pass through to get to the body. My soul mate can move his eyes from side to side, cough, move his right arm so that his elbow is bent and when I have held his hand he has squeezed it and also tapped me 4 times perfectly with his index finger. While I hold his hand he has stroked the back of it with the tips of his finger and has moved his fingers when my hair brushed through them. He jumps at loud noises and fell asleep to me stroking his head for 20 minutes, something he has always asked me to do. They want to withdraw the ventilator to end his life and if he keeps breathing they want to start end of life care and not use antibiotics if he catches a chest infection.
Please could someone advise. I am desperate and do not know what to do. I do not want to drag his suffering out, but I am scared that the doctors could just be too negative about it. What if he could miraculously pull through. They say they believe he is not conscious and never will be based on the area that is damaged, but what if my partner defies the odds? Does anyone have experience of that part of the brain being damaged?? I’m scared if I agree to ending life support I could be robbing him of the beautiful future we always planned and that I do desperatley. need. He’s only 30. Am I being cruel or am I nieve to listen to the neuro surgeons every word? Please help, I am running out of time.
Written by
Loveandcats
To view profiles and participate in discussions please or .
"they believe he is not conscious" however you list actions to suggest he is consciously interacting with you in his own small way. You have the higher mind/heart connection with him. Not the doctors.
Keeping you and your soul mate in my thoughts. Best.
I feel that it is probably too soon to be taking him off ventilation and talking of end of life care. You know the situation with your partner you know him best. He appears to be showing a level of consciousness and as such i feel it would be wrong to talk end of life.
My situation was not the same but i had been 3 weeks in a coma on life support with minimal brain activity. My husband was asked on more than one occasion to put DNR on my notes which he would not.
He was even asked this after they had taken me off ventilation and i was holding my own.
I am not saying you could expect your partner to recover as i have but he should be given every chance.
Loveandcats, It seems there are contradictory signs in your partner's behaviour to suggest withdrawing care might be premature.
Please phone Headway's helpline on 0808 800 2244 for more professional information and advice on the medical and legal ramifications of such an urgent and emotive issue.
There are many considerations ; the length of time and level of progress since your partner's brain injury, the conviction of the doctors and the wishes of the next of kin.
Prolonging life is only unfair if the patient is suffering but, where there appears to be hope, your partner of such a young age deserves a reasonable shot at survival, unless the passage of time proves otherwise.
My heart goes out to you m'love. Please phone the helpline.....
My partners damage is left side, he has been out of sedation for 4 weeks now and what he is currently doing, in terms of re entering the real world, is much the same as yours. I will be thinking of you, and I would be begging them to give him a little more time, I also find the Drs and consultants negative but, like a previous replier has said, miracles do happen. I understand how you feel because my partner is relatively young and we also had big plans for the future. Take care and keep us posted.
I too would be reluctant to end life support if your soulmate was showing these signs of alertness. I really would like to help but you have to remember each brain injury is different. What one person experiences, another may not. I really do agree with Cat on this one, call Headway, they truly are amazing.
Although my scar is only small and the actual way it occured still remains somewhat a mystery, I am still here. After 2 years of back and forth to the GPs with varying symptoms, It was discovered that I have a small scar on my right cerebral peduncle and thalamus. I believe it must of happened in my sleep as I woke up one morning feeling somewhat different. Although my peduncle and thalamus isn't completely damaged, I have a multitude of varying symptoms on a daily basis, but I am still here. I have read so many articles on this and not once have I found anyone who can offer any of their experiences. It seems to occur quite infrequent.
I would try to hold on as long as you can maybe look at getting a second opinion. There may be a long road of recovery ahead if he pulls through so be patient.
Please do all you can and give him longer and to have a chance to get more out of life. Doctors don't give long before they ask to stop medication and let them slip away. This used to be called the Liverpool pathway but because the public rebelled against it they have tried to make it sound gentler. It is not gentler. PLEASE give him longer.
Good morning ... I hope you have managed to get some sleep and are trying your best to look after yourself ....I am saying this I know how it feels to be going through a situation you feel you have no control over .... there is no pain like the pain of not being to help the one you love .
My situation is a little bit different but I felt I need to reach out to you.
My son Craig 41 was turned away from the hospital twice and didn’t have the investigations he was promised even though he had suspected SAH on his discharge note ,consequently two days latter he had a massive grade 5 bleed he was operated on and was in Kings hospital for two months with very little response...they took several attempts at taking him off life support but did not hesitate to put him back on when he struggled ....we were told the way Craig was presenting not to expect much more from him Craig to could open his eyes and responded to pain..... six weeks ago he was transferred to the Royal Hospital for Nuero Disability..... the change is amazing he now has his tracheostomy out and is eating regular food and they are looking towards removing his peg ...he is out of bed and spends several hours a day in his wheelchair and in the last couple of Weeks he has said the odd word ...the therapists are amazing and Craig is doing far more we ever expected...I guess I am trying to say to you don’t give up...fight for you man and get a second opinion ... I so wish we had for Craig it’s one of my major regrets and plays on my mind a lot.....it seems to me he is there somewhere ...time and the right treatment may bring a totally different outcome.....
I’m no expert but do everything you can ...... sometimes miracles happen.
Thank you everyone for your replies. I’m sorry that I’m only just responding but please know your replies brought me comfort and I contacted headway for advice. He Improved slight so the meeting has been set back only by a few days I imagine. He has started fiddling with his hand. Please see my recent post for my latest worry, I could really do with some wise words and reassurance. Thank you
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Jobs for people with brain injuries
Decision-making and anxiety post-bleed
Do challenge end of life care designation 
Oh great news....your better now!!!
