Seeking advice/experience

Apologies in advance for my ignorance. Am seeking some advice for my family.

Hi there,

Is a longish story but will try to keep it brief. I am wondering whether anyone has experienced something similar.

Anyways, at the start of November, my mum (who is 60, normally relatively healthy) went to hospital to have an abscess drained. During the op (while under a general) her heart stopped. There's discrepancy over how long for - initially were told no more than two minutes, but the discharge notes said 4-5 minutes .... She had to be put in a coma for a few days; on coming round from the coma she had quite severe post-coma psychosis: very strange delusions, had lost 20 years of her life, extremely confused and did not believe she was in a hospital.

There is a lot more to it - too much to go into, really. Three months on and she is in many ways better, but still struggling with short-term memory problems, doesn't know what day it is. My parents live in Spain, and she still hasn't grasped that they live there, and constantly asks my dad when they are returning. She also talks about an apartment (they've never had an apartment).

Someone unaware of the situation wouldn't know there was anything wrong: she holds seemingly normal conversations etc, but about 70 per cent of the time, the stuff she is talking about is completely false. For example she was telling her friends about how she had ordered all the presents for Xmas online, and they were wrapped in the wardrobe. This wasn't true, there were no presents.

She also has very little engagement or interest in people, or any of the things she used to do. Her personality has changed a great deal. She wouldn't ever ask me, for example, how work is going, what my daughter has been up to or anything like that.

It is like she has dementia/Alzheimer's. She is currently on medication for this, although they aren't doing anything. She did not have any signs of this before - despite doctors suggesting that she must have (although we think they said this in case my father decided to sue the hospital, as there is a possibility something went wrong with the anesthetic).

Follow-up MRI scans have yet to show any physical damage to the brain: hypoxic brain injury is a possibility. Where my main query lies is, have any of you experienced anything like this?

No obvious signs of damage should be positive in terms of hope of recovery - but could there still be some damage to the brain which would cause this, yet it not be big enough to show up?

There hasn't been any real improvement or change since the coma medication wore off. My dad seems to think she is worse in some ways, and is at the point of considering selling up and returning to the UK

Give the complexity of this all, I did think it was a long-shot posting, but nothing ventured, nothing gained.

Thanks for taking the time to read this.


14 Replies

  • Hi

    Welcome to the forum

    I have had no experience of your mums problems I am sure that other members of the group will be able to help


  • This is a most difficult and worrying time for you all especially because you all do not have any answers to explain what has happened to your mum. It is a complicated situation and only the Drs treating your mum with the results of any scans and investigations will be able to establish what has happened and why she is now presenting with the difficulties that she has. Unfortunately I don't think any of us on here can help answer the why and what has happened and we are not medical professionals but either people with BI's or caring for someone with a BI. However if she does have a hypoxia BI then you will find this a very supportive and understanding forum.

    Best wishes to you all and I do very much hope you get some answers from the hospital very soon.

  • Such a sad story it does sound like Alzheimer's, try making a memory book,with pictures of het family and things she used to like to do.go through it with her or send it to you're dad.humour het in a nice way and try not to dissagree with het too much.many blessings x

  • So sorry to hear about your mum's problem. I'm not sure that anyone can offer a prognosis for Hypoxia, apart from 'wait & see' as it can take a year or more for the brain to return to it's full potential after such an injury.

    If it were me, I'd be looking for compensation from the hospital if only to provide for long-term care for your mum, should she need it. Of course that could take a long time to process or could even fail, but I'd have to put it to the test when the damage coincides, absolutely, with the procedure performed by that hospital on that date.

    For your mum, I'd be looking for any available neuropsychological treatment to see if there's a way of minimising the after-effects of the Hypoxic injury, although that may be complicated by the fact she lives in Spain.

    I suggest you phone the Headway helpline to talk to professionals who are better informed about how to deal with this complex type of injury.

    The call is free and the no. is 0808 800 2244 9am-5pm Mon-Fri.

    All best wishes, Cat.

  • Hi

    So sorry to hear about your mum, so worrying for all of you.

    I, too, would advise claiming compensation and start now, it takes years.

    Also contact Headway, I have contacted them on several occasions and they have always been really helpful and pointed me in the right direction.

    Please keep in touch and share when you need to on here, everyone is so supportive and most importantly, understand.

    Take care

    Alice x

  • Hi Chas,

    MRI is good but not God.There are many illness/disease processes and microscopic damage that may not show up on scans.There is also a correlation between timing of scans and the stage of an injury.If your Mum showed no signs of this problem prior to op then I would have to be suspicious.

    Even if injury has been sustained all is not lost.Although we cannot grow new braincells when damaged the brain is designed to create new pathways and re route signals to help restore the functions that have been lost ( Neuroplasticity ).The fact that Mum has made some improvement in only 3 months is a great start.Try to get as much professional help/support as you can for her-persistence may be necessary.

    You sound like a great caring family,

    Best wishes to you all x

  • Hi,

    Thank you all for your responses. I appreciate the time and thought you have given.

    It is reassuring to hear some of your comments - and it sums up what I think we all feel overall: that it is just a case of waiting, and that three months is still quite early days in terms of recovery.

    She does have further appointments with the neurology team. I guess it would be simpler if we knew for certain that there had been some damage - and the scans could confirm this. However, it also occurred to us that there may be some resulting damage which is too small to show up.

    But with the lack of medical evidence, we were then wondering whether it was more psychological - a form of PTSD, perhaps?

    Re: seeking compensation - I think we'd have a battle on our hands. My boyfriend is a solicitor here in the UK, and I spoke to some of his medical negligence colleagues. His firm is far too small to take on international work but we keep being recommended Irwin and Mitchell.

    The problem we have, as some of you may know, is even if they were negligent with the anesthetic - which caused the original cardiac arrest (something they haven't admitted and won't) - it would be proving that the damage caused is a direct result of their actions. We have been warned Spain is one of the harder countries in which to be successful with such a claim. And going by the conversations we had in the immediate after-math, they are ready to fight it, and have defenses in place already.

    The original doctor explained it as such: "the house was already unsteady, the wind blew and knocked the house down. Nice analogy, huh! Obviously it would be down to the solicitor to determine whether it is worth taking on the claim.

    It could be that the next appointment might show something more substantial to go on.

    I guess it is a case of hang on in there - we just feel a bit of a loss as there is only so much my sisters and I can do - and that leaves it down to my dad.

    However, I think I am going to encourage him to join this group - as he is the one who is there each day.

    Thank you all again. x

  • Whatever you do you must use a specialist brain injury solicitor, and if you do expect up to as much as twelve years of litigation, mine was solved in four luckily, and it was the single most stressful and degrading process of my life. Mostly caused by the attitude of the neurologists!

  • This is such a sad and difficult situation and you are right that seeking compensation even if it were the UK could be difficult. This is all just thoughts so please just consider it as such as could be absolutely wrong! I am not defending the hospital and if they were negligent then yes I say too that you should go down the compensation route.

    It was obviously unexpected that your mum arrested during her op. I can only assume that the standard of health care and things that are done in Spain are similar to UK - but I don't know as no experience. But a cardiac arrest does sometimes happen during Op's and not necessarily due to negligence but because of age, previous health conditions etc. Although it could also I am thinking possibly be a bad reaction to the anaesthetic which of course can never be known until it occurs. We all sign a consent form which in the UK the risks are explained and we sign to accept. My other query which could be an issue for an unsuccessful claim is that as the cardiac arrest happened during the operation although the heart went into an arrest she would have been intubated at the time and still recieving oxygen. They will have immediately started cardiac massage and within 5 minutes they had got her heart going again. So.......they may defend the claim by saying that it could not have been known she would arrest, a consent accepting anaesthetic and surgery risks was signed, the cardiac resuscitation was commenced immediately, she was oxygenated throughout and the heart restarted within 5 mins. In which case they may argue that If a hypoxia brain injury has occured they were not negligent. I know that having an anaesthetic and having an op can put our bodies under great stress. So if they stick to there opinion that it is Alzheimer's, they may argue that it was the op and anaesthetic that has triggered the Alzheimer's to be suddenly present and quite severe, and stick to there opinion that there must have been some very subtle signs of forgetfulness, confusion etc that had just been brushed aside as it often is in the early stages as the mishaps we all make sometimes.

    I may be spouting a total load of rubbish and if so please don't be offended because obviously I don't have all the facts other than what you posted

  • To be honest, compensation has been the last thing on my dad's mind. It is certainly not a route he would choose to consider. I think he would only explore the option were my mother to need another form of care, which would potentially come at a cost.

  • I'm not a medical person, but I was diagnosed as having hypoxic BI. I didn't have an MRI scan until much later and I've been told by medical people that the brain swells up and it's visible sometimes on a scan within the first couple of days.

    To help her with her problems buy a little alarm clock which has the day of the week and month and keep it near her, she will find this useful reminding her what months or day it is. I have one in the bathroom, one in the bedroom, and another by the kettle, she will feel less disorientated.

    Get an A5 size diary and get her to fill it in with who she sees and where you go. Put down hospital appointments, birthday etc. She can refer to it later and can put notes about appointments which will help her brain find the memory.

    I'm sure the hospital will manage to cover it's back, and you may feel that a long expensive fight isn't worth the trouble but it might be worth having a talk with a brain injury personal injury firm, but I'd ask Headway first.

    I had a very vivid memory of being in a square walking towards a very hot big blinding sun. Apparently that's not unusual when the brain has been starved of oxygen. I used to keep telling people about it because it seemed so real. It doesn't mean that I was bonkers or had PTSD.

    Three months down the line isn't far in brain injury and people can improve with the right treatment and having supportive people around them who give them confidence. She might not be asking friends and family about jobs etc. as she's frightened she'll ask about an old job or get their names wrong. I have known people have a crib sheet of family and their names. A couple of times I forgot that people had died and asked after them.

    If she was OK one day, and not the next it is unlikely to be dementia, although underlying dementia would make having a brain injury worse I would have thought.

    Have the hospital carried out cognitive tests? What sort of rehabilitation are they getting her to do? Are they sitting on their hands hoping you will whisk her off to the UK?

    Sorry to ramble but once I start....

  • My partner has a hypoxic brain injury. He had no idea where he lived and he spoke nonsense for months, it's called confabulating. I can't imagine that your mum would develop full blown dementia overnight, it sounds much more like some kind of brain injury, but obviously I'm no expert. My partner suffered lack of oxygen for far longer than your mum, so please try to be optimistic. If it is a brain injury it is very early days, as no doubt others have mentioned.

  • Just want to thank those who replied since I last logged on. My dad has joined the forum, now. He obviously has more one-to-once contact with it all.

    There is a neuropsychological assessment booked for later this month.

  • Hi, my dad had a severe hypoxic brain injury nearly 6 months ago and went through a similar phase. I've posted a reply to your dad. I think you can probably expect a lot of improvement but it does happen very slowly.

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