My daughter suffered an anoxic brain injury two months ago and her sight hasn’t come back yet

[Charlie68]

My 24 year old daughter suffered an anoxic brain injury two months ago. She was on life support for three weeks, started breathing on her own after three attempts to remove the ventilator. She has been in a hyper acute neurological rehabilitation ward for four weeks and has gone from having an ng tube to eating a normal diet. She can sit up in bed on her own but cannot walk yet , she has physio Monday to Friday for an hour if she is up to it. Her long term memory is amazing but her short term is minutes which is really upsetting as she constantly asks why she is in hospital, cries when she hears why and then asks again a minute later and again gets really upset. The main concern of mine is that she can’t see. Her brain was injured at the back and other little spots. I know the back of the brain controls your vision and we pray every day that it will return. Has anyone had experience of this? I have to travel 90 miles a day to see her as we live in different cities. The doctor won’t consider a transfer to my city ( Leeds) as she says there is no comparable ward here. I have had to stop working so as well so we have financial issues to deal with. This has changed our world and I just wanted to know if anyone has been through something similar. We get so frustrated but we know we have to be patient.

[sue-66]

Hi Charlie68, my partner suffered an hypoxic injury and right frontal lobe and intracranial and subdural haemorrhage and a subarachnoid hemorrhage and multiple fractures in April 2017. He has come a long way and still showing signs of improvement, physically and cognitively. At first his eyes never even blinked and after a about 2 weeks, his right eye could be seen moving slightly under his eyelid, soon after, he opened his right eye, a little at a time. His left pupil was blown and he didn't show any movement in that eye for about 2/3 months and took longer before it opened properly. Every brain injury is different, I found writing a daily diary really helpful and also this brain injury sight, with the helpline for headway too.

Is Leeds hospital not a specialist for neuro? My partner nearly got taken there by the Yorkshire air ambulance.

Also, it's a long path with brain injury and you must take time out for yourself, so you can keep up your energy levels.

Two months is very early days with brain injury, as many people on here will tell you and she sounds like she is doing amazing ❤ x

[cat3]

Hi Charlie. I'm sorry to hear of your daughter's predicament and of the appalling amount of travelling needed to visit. You must be exhausted. But although you'll feel it's already been like an eternity, as anyone here will tell you, two months is such a short time in terms of brain injury recovery and from what you've described, your girl has already made really promising progress.

Where is your daughter being treated m'dear ? Cat x

[Charlie68 in reply to cat3]

Hi cat, my daughter is in Salford Royal at the moment but they have just told me she no longer requires any medical intervention so she is being transferred to Trafford soon to carry on with rehabilitation. She has done amazingly well and can now walk, she needs assistance as she has been diagnosed with bilateral hemianopia.

[cat3 in reply to Charlie68]

I still get an emotional pang at the mention of the excellent Salford Royal. I was blue lighted there once a bleed was detected at my local hospital, but I'm talking 20 miles for visiting, not 90 ! And you now have a similar distance to Trafford General. You must be 40 miles out from Leeds, so quite a way even before you hit the M62.

I understand the choice of Salford for specialist urgent care but, unless the plan is to keep her in close proximity to Salford, I wonder why your girl can't have continuing care for the hemianopia closer to home ? Trafford General has a very good reputation, but specialists in ophthalmology aren't resident there and consultants come over from the Royal Eye Hospital at Manchester Royal Infirmary.

I would double check whether an alternative can be found nearer to home.....for all your sakes.

Either way, I hope your girl continues making progress ; she's come such a long way in such a short time. Best wishes to you all.... Cat x

[Charlie68 in reply to cat3]

Hi cat, my daughter is a resident of Salford so that’s why she is going to Trafford general. We actually live in Leeds so it will be a similar distance to travel for us. Thanks for your kindness x

[cat3 in reply to Charlie68]

Ah....now it makes sense !

All best wishes for improvements soon. Keep us updated Charlie... x

[Charlie68 in reply to cat3]

Will do. X

[Cornishwaves247]

Hi, I suffered a bleed in the back of my brain (cerebellum) which happened June 2017. It was caused by an AVM. My vision to this day is still repairing. I have never lost the vision it was just impaired quite severely. I mainly just wanted to let you know that your not alone with this situation. Everyone is correct in that recovery can take a long time. Everyone heals at different speeds. None of us like being told to be patient with the situation as we all just want to be seeing results and improvements. I do believe my circumstances will continue to improve, no matter how hard the journey has become for me. You are stronger than you know towards this situation. And in time the rewards will begin to shine. You daughter is super lucky to have your support and comfort. It plays a huge role knowing there is someone there with you. I went through very similar to your daughter so can relate quite well towards it. She has youth on her side so you must look at that as a positive. I’m sorry this is going to be a slow recovery journey, there are many of us taking the slow walk. If you ever want to message in regards to symptoms that I may have encountered then please get in touch. I’m not a dr but I can always share my experiences which may help. X

[Charlie68 in reply to Cornishwaves247]

Hi, my daughter has been diagnosed with bilateral hemianopia and is now ready to be transferred to a different hospital for rehabilitation as she no longer requires a hyper acute neurological rehabilitation ward. She can now walk which is amazing 😄 I feel like her sight is slightly improving, I showed her a few random photos and she could make out most of them and the colours. She is still 100% in need of care, feeding, dressing etc but recognises family when we walk into the ward. Is there anything I can do to help her? Are there any more tests she can have for her sight or aids?

[Flumptious]

Hello Charlie.

I am afraid we can't say what will happen with her eyesight - each person is different. but improvement can happen, even if it is very slow.

I had my TBI in 2005. I spent a couple of weeks in a coma, eight months in hospital, and eighteen months off work. Give her time, she still has lots of recovery to do!

My memory for the first six months was horrendous - they put a whiteboard in my room, so people could write down that they would be back in a couple of hours. That short-term memory took a good few months to get sorted, but it did. I still have the year and a half from before the accident, and the first six months afterwards, missing, but my day-to-day memory now is absolutely fine.

My eyesight was doubled for the first six months or so - I had to wear an eyepatch on one of my eyes. I still have that if I look downwards at an angle, but when I look straight forwards, it is fine (well, apart from the fact that I don't see to my right... but I see well enough to manage, fine). Six months after the accident, I thought I would always see as badly as I did then. But thankfully it improved, slowly.

I hope your daughter recovers OK, soon.

[Guppygould]

I was 20 years old when I suffered a traumatic brain injury and was in a coma for three weeks. All brain injuries are different, but like your daughter, my long-term memory has always been strong. My advice is just to read all you can and act out things that you think may help. I made some new habits a couple of months ago and yesterday I managed to acheive a 'normal' walking gait for the first time in nearly eight years. It will take time and she will be struggling, in a similar way to you are, but please just stick in there.

-Leo