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Looking for hope

Hi

It’s my first time posting on here

Last Sunday my wife had an aneurism burst and a sub archnoid hemmorage

They found four in total on a cta and treated three on coiling and two clips

So she had a craniotomy

She started to recovers but swelling meant they had to do a Crain ectomy to relieve the pressure

She been in a heavily sedated semi coma state since

They have since done a tracheotomy

Because of the chest infection caused by ventilation

She fought through all this and I’m so proud and very much in love with her

And I’m finding it had to stay positive

As I’m sometimes in pieces just sat with her

I’m hoping that someone on here had similar experience

I want to here some positives from people who gone through this

47 Replies
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Hello Phil and welcome. I'm always very moved by posts from people like you as I'm reminded of my family's shock and fear after my SAH 7 years ago. You'll be feeling every negative emotion including panic and disbelief, not to mention the trauma of separation.

All I can tell you is that if your wife has survived the initial bleed and the various procedures, so there's every reason for optimism. Swelling after craniotomy isn't unusual and her brain will now be allowed to rest unrestricted until it's considered safe to replace the bone flap or alternative plate.

There may be further unnerving developments (my family described the experience as surreal, precarious & terrifying). But the brain needs time and rest to find its way back from trauma so please prepare for a long wait whilst progress takes place ; it can't be hurried.

Your wife may be unresponsive and probably won't remember most of this period, but your voice and touch will reassure and comfort her in the meantime. Try to absorb the ups & downs as par for the course (massive challenge I know) as brain injury is rarely straightforward. And don't neglect your own basic needs of eating and resting whenever possible.

Keep us updated Phil...….....all best wishes for your wife's good progress, Cat x

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Hi Phil

These very early days you will find yourself shocked and on auto pilot. It will be a long road to recovery so take time to look after your own needs.

Wishing you both well.

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Hi, my partner suffered a large bleed on the brain back in early December, not as severe as your wife, but scary nonetheless. As a result of the initial bleed he then suffered seizures every half an hour for 4 days before the doctors were able to control them.

He doesn't remember anything about the 11 days he spent in hospital, and not a lot about the rest of December. What he does remember is knowing I was by his side in hospital and looking forward to my visits. I'm not saying that you need to be by your wife's bedside all the time, but being there will certainly soothe her and it helped me through some tough times knowing that my partner still knew I was there for him.

I wrote on here in the early days about how tough everything was and how my partner had turned into a stranger, staring at the wall for hours, lethargic and unresponsive. I would like to reassure you that the brain is amazing and while I've learnt that every case is different he has come on leaps and bounds, almost to the point where unless you knew his history you can't tell anything is wrong on a casual meeting.

He has dark days and there are days when I cry my eyes out after he goes to bed, there are also days when we laugh so hard together it hurts and we stumble through life like we've always done.

My top tips are:

Stick with it, it gets better.

There is help out there you can access, but you have to push for it.

Be aware that the majority of people don't understand brain injury and the behaviours that can be associated with people in recovery (don't get me started on his parents and the ridiculous things they've said, especially as they've only seen him 3 times since his first admission).

A sense of humour really helps.

Good luck in your journey.

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Thank you for your kind words

Today they removed her sedation and she was agitated

Visited today and she showing slight improvement

She knows I’m there and nearly managed to blob her tongue out

I know she in there still

Which is a great comfort

I know these are the first steps to her recovery

It’s scary because no one know where it will lead too

But just hearing your stories of your own individual hero’s who gone through this terrible journey

Is a great comfort too

A know it sounds daft but everyone who come through this horrible and terrifying disorder and recovery are hero’s in my eyes

And everyone in the nuero care wards and the specialist surgeons are superhero’s

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A little bit of progress...….. good news. I agree about the heroes and was so happy in having the chance to thank my surgeon in person ; he'll always be my hero.

Looking forward to more good news Phil. x

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Hi I suffered the same in December 2013 ruptured brain aneurysm causing a subarachnoid hemorrhage when I arrived at the hospital i was too unstable to undergo surgery they used medication to stabilize me and on the monday morning I had surgery to place tiny coils in the aneurysm to stop the bleed and six years later I am still here I wish your wife all the best for a good out come best regards Dave

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Hi Philbu- welcome to the forum. There is a member who has a website and has written a book about her experiences- Kavib

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Have a look at her website- kavitabasi.com

Hope this gives you more information and hope. All my best wishes

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Hello Phil, I had an SAH4 in 2009, I had Ventriculitis followed by UTI and to top it off Sepsis.

I am glad I remember none of this. But I had people who loved me and helped me through it. My sisters used to sing to me, my Daughter asked her Dad " will Mum get better Dad" and my hubby said yes but when? I was off with the fairies seeing my Mum who had passed and also Dad. Mum would never talk to me. She would tell people off if they did. Your wifes brain feels like it has been in a war. Sing to her, talk and even though it seems like it isn't getting through, never give up. She just needs to heal and it is a long process, make sure they empty her catheter if she has one in as I swear that is what caused me so much pain and Sepsis. Talk about the old times as she wont remember recent things, well I never. Some on "Behind the grey" have had craniotomy. Lucky I just had coiling. I wish your wife all the best and keep yourself well as she will need you when She wakes up. Wishing you both that she gets better and better every day. I cried when I read your mail, we become watery heads after B.I.= Brain injury but I know I am better as hubby argues with me now. Good Luck xxxx Long Journey so hang on in there xxx

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6 years ago my partner had emergency brain surgery to remove a rapidly growing tumor. The week following surgery was very similar to what you’re dealing with right now. Trach, induced coma, etc. it’s a very frieghtening time. Not knowing what is next. Just breath, cry, lean on friends, reach out to as many people as you can, whatever comforts and strengthens you.

Every case is unique but my partner is doing pretty well, 6 years later. The first 2 years after there were a lot obstacles. She had to learn to walk again. And she had to have speech therapy after the trach was removed. You’ve got to stay positive as best you can, attitude is EVERYTHING here. She’s pretty close to who she was physically now. But her cognitive functioning is compromised and that has taken a toll on our relationship after 6years. All-in-all, she’s very lucky to be healthy. I’ll pray for you and your wife. I’m always here if you need to talk.

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Thank you for all your words of support

Bit of upset yesterday

Had a blood clot form in her arm where the arterial line went in for some quick emergency surgery sorted it out

I know it all just time now

She is off sedation

But I can see little responses

In each limb

And we’re pretty sure she had a cough and swallow

I know she will come round slowly and I’m hopeful for once

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Everyone’s right about the ups and downs

I know her recovery is going to be long and slow

Today’s hurdle was a vomiting bug

Had to up her support a bit

I’m so proud of her for keeping fighting

I wish I was more worthy of her

Im not positive person

But it when you realise

after bargaining with god and the other strange things you do

That I’ve never had any control over this thing that’s happened

It a strange acceptance

You as family are just a passenger hanging on a terrifying ride

No person asks for this or its outcomes

and no one can or has any control of anything really in their lives

We just have to live with the consequences

Our lives change in an instant

It’s calming that sounds really strange

I’m rambling because I’m tired

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Hi Phil

You find you do eventually accept what is going on. At first your mind is in a kind of denial and you think your loved one is going to wake up and be out that door in a few days. It is so very very hard.

Keep visiting and keep talking. Might help for you to keep a little progress diary. When you read back later on you can cheer yourself up by looking at the milestones.

Yes we do plea bargain with God. We get so desperate.

Really hope with all my heart that things go well for you both.

So important to take time for yourself else you will become over tired and not cope. Just a long bath or a favorite meal or catch a film. Most importantly.... Sleep.

As said before you're r on a long journey.

Take care.

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I don’t know how all of you have managed to cope through you personal journeys

I am finding it incredibly hard

I’m struck with awe at how your all managed your situation and how you selflessly help other on here

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The forum consists of Brain Injury survivers and carers/supporters.

We all are in a club we didn't ask to be members of.

I have found it so helpful with various problems. It is a real support.

I know what you are going through at the moment and it is incredibly hard.

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In time the fear subsides, then it's a long climb to a new kind of normality...…….which is a safer but very different place.

Most of us have looked back in awe at what we (and our loved ones) have survived and progressed from. I hope it won't be too long before you're both looking back amazed at how far you've come. x

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I wish so much so

But seems they writing her off

Progress is really slow

Still on ventilation and can’t seem to get her off support

Now on about transferring her to icu somewhere else

Starting to talk about funding and stuff

And even though she can’t communicate

It’s like they talking about her not to her

I think it really disrespectful

I know that I’ve never had any control over this. From the moment we met this would have happened

I don’t know how long this is going to take neither do they

It’s been 2 weeks since first surgery 10 days since decompression

Good points she off all iv lines

Sat her up for first time but only a few min

Thought we were making tiny steps

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Hi Phil

I have no experience of them transferring to another ICU but maybe another member has.

Hospital staff do sometimes forget their bedside manner and it can be really annoying. Generally I found the ICU staff

Very good but once we hit the wards found communication a constant problem.

Still very early days Phil so hang on in there.

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I know and thanks.

She been transferred today and all gone well

Had good chat with doc today thinks that’s what was missing

Prob didn’t want to talk to me in my state

Tbh I’ve been really emotional

Another step forward

Move from hdu to icu

Although I wish she would show more movement

Rest day today then reassess tomorrow

I’m going to get one of those hang in there kitty posters

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My Daughter felt she couldn't talk to her Dad as he was worried for me, so they both hid their fears from each other. (So my Daughter tells me). It is natural to be scared when someone you love is ill. Remember her Brain has been through a war and her sleeping might be the brains way of resting and healing itself, I read this in "A message from your Brain" My Daughter used to ask my Sisters "include Mum in conversation" but I was out of it so they sung to me. Good luck on wife's recovery and we do get good days and bad ones and it is hard on our Loved ones. My husband said you took 2 steps forward then 1 back in recovery. So just be there for her and she is a fighter so get her to hear you as one day she will XX Good luck the pair of you xx Also remember to make sure her catheter is emptied regular if she has one. That was painful for me, So I tell everyone this bit of advice. Sorry if I repeat it. Now rest relax as tomorrows another day and hope it is all good news for you both

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So glad she is out of intensive care. I always found that space ship environment quite unnerving.

Nothing wrong with being emotional and it's good not to hold it in. I couldn't

hold a conversation with anyone for a while without breaking down. People understand. Lean on them when you can. I found an incredible amount of kindness even from business people I had to deal with. It will pass and you gradually start holding it together.

Like the idea of the poster.

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Still in intensive care But another tiny step today

Reduced one anti epilepsy med and now more awake had good hour today

Slowly weaning down ventilator support

I’m very pleased with progress today although just had physio so zonked out again now

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Good news Phil. Hope things keep going well.

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Staying positive is the best thing to do in situations like this. Please visit my YouTube videos I have done to help others through these times. They are positive and give hope I have attached link here :

Good luck x

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Thank you kavi

One thing you have in common with my wife Vicki is

17th March was the date of her subarachnoid haemorrhage How strange

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That is so strange but hopefully good. All my wishes are with you x

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I’m starting to loose hope again

So many thoughts going through my mind

Maybe off ventilation today

Big step

Her cognitive side not great

Longer bouts of consciousness and even had small one sided smile

I can tell She has hemi peresasis

Left side brain infarct

Weak right side

I’m worried that the aed drugs

Are causing her lack of response and drowsiness

And although I’ve said this to docs No one in icu is a neurologist and they just following protocol after brain surgery

I’m starting to worry of a minimal conscious state diagnosis and what will happen with that

She has gone through hell with this so far

I feel they are letting her down

And I don’t know where to turn to next

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Good morning Phil

Please don't lose hope.

You are having to cope with an unbelievably difficult situation and the pressure on you is enormous.

These are very dark days for you but the really difficult thing is no one knows what the outcome is going to be.

If you read all the posts on this forum you will read about many people who have come through this. Yes, for some the outlook is not so good but you are in such early days. We always think the worse.

If you need to talk have you considered ringing the Headway help line? I found them to be very supportive and they helped carry me through.

Best wishes to you and your family.

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Thanks Lynd

The ups and down rollercoaster

Today more alert

Swelling gone down loads

It’s quite scary to see how much of her skull they have removed

Off the ventilator

Deflated the trachy cuff and smallest trachy fitted

A day of rest must have really took it out of her

Today been moved to hdu. One down from icu

Hopefully trachy will be coming out

Still on little oxygen support

Cognitively think she still there

Had couple of shakes of head

And I asked if she could remember me and she rolled her eyes at me

Becoming more aware of everything

Still think the aed drugs are suppressing her a bit

23 days from first op

20 days from decompressive

13 days out of coma

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A few positives there Phil.

Headway may be able to talk through a few of the issues you mentioned earlier.

She appears to be responding to you so keep talking to her. A bit of music, reading to her. Pick something she may have enjoyed in the past. We don't know how aware people are but she will find your familiar voice soothing.

When my husband come out of it for a fortnight he called me Wendy and thought I was a girlfriend long before my time. I was thrilled. Not.

Then he thought he was in a hotel. Then at work. Then on holiday and finally come back to me. It all took time.

Don't forget the helpline.

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Lynd how long was your husband in coma and how long after did he regain consciousness

My wife had been out of coma for 13 days but still not fully conscious only few hours at time

That Keep saying she’s tired

Think that’s bullshit

I don’t know anymore

She responds to me

Docs just keep managing

Nuero have not done any follow ups

Don’t know what to do next

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It was about five days Phil.

If you are not getting the information you want you could go to the hospital pals office to voice your concerns.

Remember everybody is different with brain injury.

Hope today is a better day.

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Morning. Thought I would jump on this as I can relate as both our partners have suffered a severe tbi.

On the 9th December 2018 my husband was playing with our youngest child (4) and tripped at the top of our stairs, falling backwards top to bottom talk g the whole impact on his head. He was unconscious instantly and had trouble breathing. He was airlifted to a neurological centre about 30miles from our home for emergency surgery. He had fractured his skull in 12 places and had a palm sized subdural Hematoma on his right. They performed the crainotomy and replaced the bone. 24 hrs later they proved the bone as the pressure was too high.

We were transferred to our local hospitals ICU 13 days after where he stayed for the next 16 days (29 days in critical care in total) He was taken off sedation around day 21 and we were lucky that his co dulrant gave him a chance to breath on his own before doing a tracheostomy. He was moving and talking (very garbled but answered questions etc) On day 46 I had a phone call from the ward to say he was being blue lit back to the Neuro centre for emergency surgery as they had found a huge build up of fluid and a smaller bleed on his left side after I had spoke about his sleepiness.

He responded really well and was only on ICU for 2 days and then a Neuro Ward. He started to drink and eat and sit in a wheelchair! On day 57 they decided to put the bone back in place as they were happy with his progress. 4 days after the surgery he started to become unwell and on day 66 they removed the bone they had replaced due to a massive infection. To say things have took a downward spin is no exaggeration. After that surgery he was so poorly. He stopped breathing, his ventricles keep producing too much brain fluid so has to have lumbar punctures, developed epilepsy, stopped moving, stopped talking, stopped eating - was basically in a minimal conscious state.

Today is day 125. He started to swallow fluids this week and instead of just staring into nothing (so un nerving) he has begun to focus and you can see in his eyes he is there.

This journey is so long. We are both only at the very start. I am mentally exhausted. I have to put on face to our family's and 3 young children and work and it's bloody tough! I have made peace with the fact my husband will not be who he was, but I now concentrate on the now and next, not the was.

He may never be who he was but he is still here, so this will just be our new chapter.

I don't think it will ever get easier but you do start to find a bit of stability - especially when your not in that critical care environment where you can take 5 minutes to process a bit more.

Ask questions. The lack of communication is shocking and I have to badger for information all the time.

Keep in touch. We both have a long road to travel with our partners - I pray for both of us we get to our destination without too many detours along the way x

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Good luck chard.

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Thanks chazd

I do hope your husband improving

And I’m really hoping he does

My best wishes to all of your family

Your right about the communication

Told docs on hdu that I wanted a private neuro surgeon referral

If they refuse to see her I’m going to make complaint

Don’t see how someone in hdu can spot signs of deterioration in a minimally aware patient

Swelling around her bone flaps gone down

But has loads of swelling just above her ears

Told them worried about it and why have they not done follow up mri

Took to taking pics myself and printing them off to compare every few days

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My husband has quite alot of swelling around the ears. Check inside as he had a build up and it was CTF leaking out! I have often felt very much on my own and when I ask questions they bat around to the point where I have to say I'm not bloody stupid, just tell me what's going on.

I have found that they often don't really know as things can change daily or even hourly, especially at this earlier stage. The photos will be good if you are getting a private referral.

I often worry I should have been more forceful and regret not being able to afford to get private healthcare.

Make sure you are looking after yourself before you burn out. We are no good to our loved ones if we cannot be there to support them due to ill health and mental exhaustion.

Chantalle

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I found the information was hard to get but in the end I got a face to face in a private room where all of my questions were answered. It shouldn't be this way.

Once we got to rehab it started again.

I blew my top when I was told a dol order had been placed on my husband without my being told. They have monthly meetings and it was two weeks after the event.

However they did eventually all make him well enough to come home so I can't say they were hopeless just need some communication skills.

Wish you all well x

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Thanks all

Bit of update

Trachy out and been removed two days now still healing up the hole

Moved onto a stroke care ward today

Becoming more aware each day

Can’t wait for first food

Promised her a chocolate mac Donald’s milkshake

I will try to keep everyone updated with her progress

As the days go on

Thank you all for being so supportive

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A lot going on in a few days.

Yes please come back with updates Phil.

Stay positive and remember to rest yourself.

Best wishes to both of you.

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Another update

Mmm bits ups and downs

Had few spoons of yoghurt

Speech are continuing oral trials with it all week

Swelling gone down loads

More and more aware every day

Had little laugh other day not lost her sense of humour

Trying to talk but bit unintelligible at moment

Bad bits

Pulled ng tube out

No radiology at weekend so went 72 hours without food

On iv drip and had 2 tissue in 2 days Not best pleased with nurses as they should be monitoring bit more closely

Physio every day sat up in chair most days

Six weeks today since first op

Four weeks since awake from coma

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Hi Phil

Really pleased to hear your update.

Sounds like things are slowly progressing and getting some improvements. I was thinking about you and your wife recently hoping things were going OK.

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Another update

Was told today that she’s being transferred back to Sheffield Tuesday for op Wednesday to replace bone flap

That was quick 7 weeks from first surgery 6 weeks from decompressive

It’s come up really quick wasn’t expecting this for another couple of months

Still no movement in right side

Just starting to swallow yoghurt

Voice just starting make grunts

Will knock her back a couple of weeks but kind of glad it’s happening

Want her back whole again

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Hi Phil

I am glad to hear that she is going to have the bone flap dealt with. Another hurdle and milestone.

Hope you are coping OK and getting some rest.

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Another update

Cranioplasty surgery yesterday all went well

Was planned for last Wednesday but got cancelled

All done yesterday and all gone ok

8 weeks from first surgery

7 weeks from decompressive

Moving forward

found out Vicki got a referral to specialist brain rehab

rather than go through stroke rehab pathway will now follow brain injury pathway

Still no movement on right hand side and some arm spasticity

But speech starting to come back made a few words but not moving mouth and tongue properly yet so going to need some work with that too

Food and swallow next hurdle

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Hi Phil

Glad all went well with the op

Are they talking about moving to a rehab unit? Remember to ask for somewhere close to home if possible.

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Hi Lynd

Rehab will be in Sheffield at osbourne 4 at northern general

Prob about 30 min travelling for me

Been told it very good

Long days at moment started back at work

Up at 6 Am. work finish bit early home feed cats swap cars then drive to Sheffield get home about 8pm

But it going to be worth it to get her home

Back on general ward last night so off constant monitoring

Next step is to get feeding and get ng tube out

Hopefully start that process today

She has right side hemiparesis

So no real movement in right leg or arm

Her shoulder has subjugated forward so giving her pain

Not speaking legible words yet. Except oww

Mentally very aware. Still same sense of humour

Lost about 5 kgs

But now back together no more ops

Recovery in a good unit

Voice coming more and more each day

Left eye starting to return to normal although slower than other eye

I’m happy with her progress

Been 9 weeks this Monday since first op

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It's better in rehab because the focus is on improvement in ability.

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