Can someone give me hope?

[Janeyo]

My partner had a subdural haematoma on 30/03/2019 and subsequently had surgery to drain it. The doctors at that time led us to believe there was an excellent chance that he would return to normal. But 12 weeks on he doesn't seem to have made any progress since his immediate post op stage. Physically he is fine and mobile. He is still in hospital does not have mental capacity and has started to have severe anger episodes, attacking staff and damaging hospital computers which is so out of character for him. He is so frustrated at being in hospital still. He is able to have short conversations but then his mind wanders off and his replies have no relation to whats been talked about. Am I expecting too much too soon? Is there a chance his mental capacity will return, has anyone out there been through a similar experience?

[Danger19]

Hello my lovely,

As a nurse, I know that recovery from a subdural hematoma varies from person to person. Common cognitive problems are things like concentration, memory, speech, all the basic things that as individuals we take for granted. Do you know whether it was drained via burr holes? These are holes drilled into the skull to allow drainage and evacuation of the hematoma. Don't worry if you don't know, it's not terribly important. I know you say it's been 12 wks but cognitively it could take a few months for improvement. I'm so glad that he is progressing physically which is a bonus. Hang in there my love. The medical professionals in charge of his care and with access to his medical records should be able to advise you a lot better than I can. My advice to you is do not worry about asking too many questions or even demanding full knowledgeable information. Doctors and especially us nurses are there to support, not just the patient but also immediate family and loved ones. Nurses should advocate for you by finding the answers to whatever you want to know and arranging meetings with medical professionals in charge of your partners care that can put your mind at rest. Yes medical staff are busy but it's our job to care for patients, immediate family and loved ones. I know that time is an horrendous thing when you are waiting for a positive outcome but only time will answer important questions for you my friend.

I wish you peace, happiness, good health and lots of luck,

Vikki

[Janeyo in reply to Danger19]

Thank you so much for your response, it has helped me considerably. its been hard being 'strong' for the past 12 weeks, I now seem to have gone to pieces and I'm tearful all the time. I think the doctors are baffled at the moment why he has made such little progress but I know you are right, I just have to be patient. Janey

[Danger19 in reply to Janeyo]

You are so welcome, I have been a specialist nurse for 25 yrs and I can find out anything you need to know from medical professional friends. Don't feel bad for feeling lost, alone and tearful. I have looked after families who are distraught because of symptoms suffered by patients. You have experienced a life changing situation and are trying to cope with seeing what has happened to somebody you love unconditionally.

This is hard on the strongest of people. You and your partner need, help and support and I really hope the medical staff provide this to you both. Hang in there, I know physically he has excelled but the brain defines who we are and his probably needs time to repair and cope with any negative effects. He will come back to you eventually. You are both in my thoughts.

I wish your partner a miracle recovery and you a great future,

Vikki

[Janeyo in reply to Danger19]

Thank you so much for your reply Vikki, so kind and more tears! The words that are jumping out at me are 'He will come back to you eventually" and I will focus on that over the next few weeks and months. I think it has helped considerably to be able to communicate with someone not directly involved with him, and someone who has so much experience in that particular field. Thank you so much for taking the time to message me. Janey

[Janeyo in reply to Danger19]

Hello Vikki. I have had a very good meeting at the hospital and felt much more positive but a couple of further queries have come to mind. Firstly my partner has deteriorated cognitively significantly over the past couple of weeks and secondly he is displaying inappropriate sexual behaviour. Is this common in recovery, do people fluctuate before stabilising

So grateful for your comments, Janey

[Danger19 in reply to Janeyo]

Sorry it has taken so long to reply but I spoke to a friend who works to Neuroscience, see what he thought. He said that as he doesn't have access to medical notes he can only tell you whatnhe knows. He said that it has not been long since the hematoma and time is the only expert in knowledge of how long it would take your partner to recover. He said that your partners obsessiveness could be that he feels he needs to prove to both himself and others that he isnin control and can dictate to himself his capabilities. I must admit that since my brain injury I have become obsessive about proving my capabilities to others. I am also obsessive about proving I can manage being a good Mum to my children. I drive my parents crazy because there is absolutely nothing I won't do. I get something in my head and I will not rest until I have succeeded in what I am trying to do so I know how your partner feels if this is his problem. Common recovery issues from a subdural hematoma are mood swings and impaired cognative function. Also my friend said that a subdural hematoma can cause slow degradation of the brain cells. This means the brain losing neurons which means cells. Don't panic because this happens to us all. It naturally begins to happen to people at around the age of 40.

If I were you I would continue to question the medical proffesionals about what is worrying you, if you haven't already. They have access to all his medical records. My friend and I really don't want to give you the wrong information. My friend said, if you can have a look on a site called medicalnewstoday,com. The truth is about 20 to 30% of people have a full recovery of brain function following a Subdural hematoma.

I am so glad you had a productive meeting at the hospital. Remember though, nurses should advocate which means protect and sometimes maendifficult decisions about whether the care received is appropriate. They should find out the answer to any question you have and support you. You are in my thoughts and so is your partner. I really do wish him a brain recovery like I had. I have absolutely no cognative problems except the Bipolar Affective Disorder. This was not due to my head injury, I was diagnosed as nuts in 2011. But I really do wish you both the miracle that I had.

Hang in there my friend, every recovery, from any brain injury takes time. But I sympathise with how difficult this is. We just want the person we know and love back with us.

Take care my friend,

Vikki

[Janeyo in reply to Danger19]

Thank you so much for your reply Vikki, I hope you know how valuable your information and advice is. I have started to see a glint of blue at the end of the tunnel. My partners brain scans are all looking good and nothing sinister was found so the doctors themselves are confused as to why he has relapsed. Its so reassuring to hear from someone who has been through the experience that recovery is possible. At the moment I'm just praying for mental capacity, anything beyond that will be a bonus. I just feel blessed that he still loves me as much as he did before the SH.

Many thanks once again, keep bringing a positive message to those who need it so much

Janey

[WinB]

I cannot help as I was out of it but I was told I called OT's witches but in my mind I was asleep all the time. Hope all goes well, it gets frustrating when no one listens though xx

Good luck keep him happy and if he sleep let him as his brain is healing. Good luck xx

Win

[Janeyo in reply to WinB]

many thanks for your reply. So glad you have made a recovery. Its so reassuring to hear from other people who have been there. xx

[Soupmad]

Hi I am 6 months post tbi after falling down a full flight of stairs and suffering from a subjural haematoma and a sub arachnoid haemorrhage alongside a fractured skull ear and elbow. I have a temporal lobe brain injury. I just wanted to give you some hope. All tbi recovery is very diffferent for each individual. It's taken until now for me to personally recognise that i have a a tbi. My husband has supported me throughout but I have no memory . I am under the care of a brain injury rehabilitation team and without their support and that of my husband I would not be at the stage I am. Sending hugs your way that your partner continues to recover but importantly look after yourself. Carers also need support.