Please help: Dad not speaking after operation

[Louise]

when looking for the word I would say 'the bus isnt at the bus stop yet' god knows where I got that from but as I improved I said that less and less, seems so silly now I guess....

Louise.xx

[Guest ElaineW]

Thats great news Joanne - a step in the right direction - mum was exactly the same. Keep your chin up

Elaine xx

[Guest wilko74]

Hi again all

I hope it's ok if I update you again as I have to admit you're all helping us to get through this, for which I again say a massive thank you.

We've just been at the hospital and to be honest nothing seemed much different except that my Dad seemed to be moving his lips a little more and his right arm (only a little, though). Still also moving his legs and doing the odd bit of scratching but - hopefully primarily because they'd put an oxygen mask on him - we didn't hear any mumbling or muttering for ourselves.

However, we couldn't see much for ourselves as we were only in a few minutes before the physios arrived to do some work on my Dad (he's a little chesty at the moment and so - because he has a history of chest problems - they're thankfully working to contain the situation). The irony was that as we walked into the room my Dad was somewhat awake - not fully - but he soon went back to sleep so all in all it wasn't a very conducive visit.

I have to admit, I would've loved to hear some of the mumbling for myself, although my Dad at one point sneezed and then later on he coughed on his own volition - to clear his chest - in a manner similar to that which he does when he's fully awake. It was strange as it was as if we kind of heard his voice (that must sound weird but I promise it was like that).

Again, I think - know - we're at a stage when we just have to sit and wait for however long it may be before we hopefully see some significant improvement. Right now, my Dad just seems to want to sleep and sleep and sleep....understandable of course considering what he's been through. I joked that the room he's in is so comfy that I wouldn't mind pulling up a bed alongside

Thanks for allowing me to sound off on here - it really does help us all in our own ways, doesn't it? Thank goodness for this website!

You all take care, as always.

Joanne

[donna79]

Lovely to hear about your dad i had oxygen to help me clear my chest i can remember that and i found it helped when my family coughed

with me because funnily enough i thought i'd forgot how to cough x x x

[Karen]

Thanks for the update Joanne ...... keep positive.....hopefully all that sleep is helping his brain to heal .... Must admit that I used to love having the oxygen mask on ..... mine wasn't through breathing probs, but they used to give me oxygen after seizures and boy, did my head feel so much better for it ..... the fuzzy head would go.... and the pain would ease.....it was great! ..... they used to have to wrestle it off my face!....

[Guest yasmin]

Hi Joanne

Like your dad I had coiling I was also speaking normally before the op and knew who everyone was, however during my op I had a second bleed and when I woke in the Intensive care unit I could'nt speak, after a few months I started to rememember bits about my stay in hospital and can only hope that like me your dad knows who you are but is still tramatized by the operation and all the drugs, my husband was told by the Neurosurgeons that he should not expect too much and I might not fully recover on my right side, but I did and I'm 17 months post op now everything is working as it did before the SAH except my memory but its improving and its a small price to pay for my life

Fingers crossed for your dad bless him

Yasmin

xx

[Guest wilko74]

Hello Yasmin,

Thanks so much for telling me your experience as I have to admit, it's hard to keep up much hope as each time we visit or ring the hospital for updates it appears as if nothing has changed. My Dad is still periodically mumbling according to the nurses - we're yet to see/hear this for ourselves - but other than that he's simply opening his eyes for a few moments before sleeping much of the time.

I suppose time is really the best medicine here, isn't it?

Thanks again.

Joanne

[Louise]

You said it Joanne time and lots of it.....

and sleep is a good medicine too...

take care

Louise.xx

[Guest wilko74]

Me again!

I just want to update you on my Dad's condition as we've witnessed an improvement today (Wednesday) as he's moving his right arm more, was awake throughout our visit to the hospital and tried to speak to us, although it was incomprehensible as it was jumbled.

A staff nurse said she'd seen an improvement even within two hours today as my Dad suddenly seemed a little more aware, he was even fiddling with tubes and looking at his hands where he's had injections etc.

I can't yet tell if my Dad recognises us as he didn't keep eye contact with us but he did tear up again when we told him how much we love him (I keep saying I'm not sure somebody would tear up if faced with somebody to whom they weren't emotionally attached....but that could just be me who's so desperate to think that my Dad knows myself and my Mum (my parents have been married 44 years now).

Anyway, as Louise and others have already said, time is clearly a great factor here - and I don't want to get too overly excited by what are essentially small improvements - but I did just want to post an update.

Also, though, can I ask another question please? With regards to the jumbled speech, how does it usually return to something akin to normal - I mean is it solely through therapy, or does it suddenly just return or is it a very slow process, perhaps returning with the odd correct word?

What are your experiences of this aspect of recovery?

Thanks as always for listening (or should that be reading?! ) and of course for your continued help and support.

Joanne

[Janet]

Hi Joanne

So glad that you have seen some small improvements. With regards to speech I think everyone is different and it depends on which parts of the brain have been affected. He's suffered a major trauma and everyone recovers at different rates.

Maybe once the oxygen mask is removed he may sound better but I'm sure that if the staff at the hospital think its a problem they will arrange any necessary therapists to help him.

Personally my speech was very hesitant and I used to mumble some words and forget others completely it was also hard holding a conversation as I couldn't concentrate for too long and easily lost track of whatever was being talked about.

Hope you see more improvements soon.

Janet x

[Louise]

Hi there

yes it takes time I always sound like an old record when saying it but its SO true, I dont remember how mines came back I did get thearipy but it was more of the brain re-booting so to say.....I would forever be asking questions why? how? just like a child I needed 'imput' I used to say.....

Your Dad fiddeling with the tubes say why they're there, helping him get better, they're not enymies they're friends....

If you've told him why he's there before you have to keep telling him whats going on each visit....

Take care and lookafter yourself...

Louise.xx

[Guest wilko74]

Hello again Louise and thanks so much for your further reply

My Dad is continuing to open his eyes a little more often and more widely but we're yet to hear any comprehensible speech or confirm for sure if he knows who we, his family, are (although he again teared up when Mum spoke to him and kissed him).

Sorry to have another question for you all but here goes: we're told my Dad is now being treated for a localised CSF (correct?) infection possibly caused by the drain. Is this pretty common as they didn't seem too worried about it and my Dad's temperature has now come down (he no longer feels or looks as hot, he's a more normal, paler colour now).

Any info would, as always, be greatly appreciated.

Thank you.

Joanne

[Guest ElaineW]

Hi Joanne - CSF - cerebral spinal fluid - they thought mum had that as she was not so responsive. It turned out that she had to have her head wound re-stitched as it was leaking. I think this is a pretty common problem - but the guys on here who have suffered will be able to let you know more. Glad you dad seems to be making progress - it's just a long old haul (but worth it when they leave hospital).

Elaine x

[Guest wilko74]

Hi ElaineW and everyone else.

Thanks again for your reply. My Dad's temperature has come down a lot now, which suggests the infection is being hit with the antibiotics. However, when we visited him yesterday he appeared a little less conscious than on the previous occasion, although his arms were moving more and he even seemed to reach out to me (touched my face).

I hope you don't mind me asking another question as I don't want to be a nuisance :? but here goes: what does it mean when the docs say they've 'raised the drainage' again? Does this mean they'd closed it off - hence the apparent drop in my Dad's consciousness - or does it mean something else? I'm afraid I should've asked what it meant but for some reason I didn't (I think I was so busy talking to my father that I missed the moment).

Thank you.

Joanne

[Louise]

Hi Joanne

You can ask away but in this case sorry I dont know what it means maybe someone else will, however why not try phoning the ward and ask them so that might put your mind at ease save you thinking about it, hey I'm always missing the moment so to speak I find they bombard you with all those sayings expecting you to know them all.....

Good to hear the infection is being hit so to speak, take care

Louise.x

[Karen]

Hi Elaine,

There's probably not many of us that actually know what procedures were carried out when we were in hospital..... you could try emailing the neuroscience nurses at the Brain and Spine Foundation ..... http://brainandspine.org.uk/ ..... hopefully, they'll be able to help you out.....xx

[Guest ElaineW]

Hi Joanne

I was forever asking questions whilst mum was in hospital so I hope this helps! I expect there is a container which collects the fluid from your dad's brain, initially it will be bright red but over time turns to a straw colour. Often it is raised up or down the bed (all to do with intrcranial pressure I believe) which varies in response due to coughing, body position etc so I think you will find if they sit up or lie down it has to be lowered or raised according to their head position. Eventually they will clip it (or tie it off)to see if there are any conscious changes prior to removing the drain completely.

Elaine

[jess]

Sorry I haven't got a clue but anything you want to know that I know the answer too I will be happy to help. Jess.xxx

[bogbrush]

I remember my drain being raised and lowered to control intra-cranial pressure and I got told off for moving the bed up and down as it interfered with it. Eventually, I pulled the drain out of my head by accident and the doctor stitched up my scalp without the benefit of a local anaesthetic

Regards

Keith

[Louise]

Ronnie told me I stood up with the gravity feed drain, & wouldnt sit down....

L.xx

[Guest wilko74]

Hello my friends

Thanks, as always, for the replies. We never did get to discover what the raising of the drain meant but we're not informed that my Dad will tomorrow (Thursday) undergo a further attempt to withdraw the drain. I don't know yet if this is done in theatre or whether it's less complicated than that (another question to ask of the nurses).

Tonight my father has also been moved from HDU to a ward. To the increasing concern of myself and my family, though, he's yet to speak although we're told he has become more alert and was a little agitated - the latter was viewed by one nurse on HDU as being a good sign of him 'waking up' (I now realise there are so many levels of awakeness in the sense that my Dad now increasingly has his eyes open and appears to be looking around more....it's just that we can't tell if he knows who we are or can understand or answer us except for the mumbling.....again, I know it takes time but it sometimes feels like the clock has simply stopped).

Anyway, I did just want to say thanks again for your amazing support, all of which genuinely is helping us at this time (I can't tell you all how much as I have to admit, it feels intensely lonely at times as we keep getting to know a nurse only to then have to get to know somebody else as my Dad is moved around).

Thanks again for everything.

Joanne

[Louise]

Hi there

That's good knowing that your Dad's being moved from HDU to a ward, a step forward so to speak, yes I can well imagine its like time is standing still at the minute (no pun intended there), for me it was just like the light being switched on suddenly I started asking questions, ok lots of quiestions but dont think anyone bothered they were glad, now I know why they were pleased....

sending you hugs

Louise.x

[Guest ElaineW]

Hi Joanne

If it hasne't already done the drain will be removed on the ward followed by a couple of stitches. Mum didn't even know it had been done. Glad to hear your dad is moving to a ward, its all small steps forward. Luckily my mum kept all the same nurses but I understand what you mean about getting to know new nurses. I got to feel really safe with certain nurses when I knew they were looking after mum for the day. It will be all small steps forward now with some days staying the same as the one before but your dad is winning. Check if a speech theraoist is on the cards which I am sure it will be. It is just a maze of unanswered questions we always have but I found the internet very useful. I have a folder of everying that was done in case mum wanted to read about it after but as yet she doesn't want to know. Hope your mum is coping OK. You both take care. Thinking of you.

Elaine

[Louise]

Usually once out of HDU and into a normal ward you have the physico's & speech thearipist.....

Louise.xx

[Cal]

Hi Joanne,

Just checking in to see how your Dad is doing.

Cal

XXX