Cranioplasty gone wrong - anyone had experience or know anyone?

[yelaro]

I'm writing this to see if anyone else has experienced this as a family member, friend or carer.

I won't go into the full story as it really breaks my heart and makes me sad but has anyone had the experience where the surgery has gone wrong and come out worse than they were and have they improved? How long did it take to recover? I'm sorry in advance for asking but I feel very helpless and sad that my mother is not improving.

[cat3]

Hi Yelaro and welcome. Firstly, please don't apologise for asking for help ; it's what this forum (and its members) is here for.

I haven't any personal experience of a craniotomy but, for those who have, I'm sure it would be helpful for them if you could give a few more details of your mother's issues.

I'm sorry it's so painful for you but, can I ask how long ago your mum had the procedure and the nature of her problems since.

You could also phone the Headway helpline, free on 0808 800 2244, 9am-5pm, Mon-Fri.

All best wishes, Cat x

[yelaro in reply to cat3]

She had a bleed on the brain back in September 2014, at the time she had a craniotomy as her brain was swelling. She recovered from that with left side weakness but could talk, write, think and walk with aid roughly about 20meters.

February of this year (2016) she had cranioplasty to obviously cover the bone flap. She was conscious for a day or so and deteriorated as clot formed between the plate and brain causing pressure, they performed emergency operation to remove the plate and my mum supposedly picked up an infection. Since then she's been in hospital picked up a fair few infections, can't speak or really communicate, still has left side weakness and all the improvements she made prior to the cranioplasty mean nothing now.

She's having rehab currently but myself and siblings are seeing no improvement. It's heartbreaking as she was someone who walked everyday, are healthy, didn't drink or smoke.

[cat3 in reply to yelaro]

Such a shame, after your mum was obviously rallying, for this to bring her down again. I hope you can stay strong and help her to do the same with lots of physical contact and reassuring words.

I'm sure the staff are doing everything possible by using all appropriate medication to eliminate the infection and keep her comfortable.

I had complications after a bleed and my family had to wait for the outcome............until the consultant came to them & announced I'd 'Turned a corner'.

I hope that happens with your mum very soon Yelaro.

Sending all best wishes and lots of hugs, Love Cat x

[yelaro in reply to cat3]

Thank you for responding Cat. I hope it's just very slow recovery, we're now nearly 4months down the line and it's getting harder each time to deal with when we go see her.

[cat3 in reply to yelaro]

We see so many anxious relatives worrying about their loved ones showing no improvement after what seems like ages. It's understandable.

But, considering the complication of infection, 4 months isn't unusual.

Owing to the incredibly complex nature of our brains healing is usually a painfully slow process, unlike that of other organs.

xx

[razyheath43]

Yup my hubby he is ok and baxk at work,they are going to try to find out why he is so prone to infection and try again in around six months,It is dissapointing i know

[yelaro in reply to razyheath43]

how long ago did your hubby have the cranioplasty? Did they have to remove the plate? Sorry for asking personal questions I'm just trying to find someone who's had a bad experience, how they and those close to them have coped. I coped pretty well first time round, this time it's a little harder.

Thank you for replying though.

[razyheath43]

Pleasure,he had the plate in for three weeks and yes its back out! he has a stethp infection or he did! it is his "own" bug so thats why they need to more tests etc,he had a PI,C,C line for three weeks and learned to do his own antibiotcs at home with weekly visits to outpaitents, we coped ok and its dissapoinitng but he is here! back at work and wanting to try again in around six months,Yes he feels vunberable with ahole in the front of his head but he wears a bump cap and is coping,we are even going camping next month,hope this helps you x

[yelaro in reply to razyheath43]

Ah that's good that he wants to try again! The scrum cap isn't always a good look but I'm sure your hubby pulls it off well! Thank you again for responding! 🙂

[razyheath43]

no problem,the hat is actually a baseball cap with a hard plastic lining,five pounds from work saftey shops,