crainoplsaty and cognitive improvements - Headway

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crainoplsaty and cognitive improvements

Maychristine profile image
13 Replies

Hi. I am looking for some advice on if anyone has experienced improvements in brain function and cognition after having cranioplasty?

My dad had a TBI and a stroke in June. He had his right side of skull removed and has only recently had cranioplasty to replace the skull with a titanium plate.

Unforunatly, my dad hasn’t made much progress in terms of cognitive abilities. He has global asphasia. So he cannot speak and struggles to understand. He also has limited use of his right side. His arm and hand doesn’t work and he is very unsteady on his feet.

I have read a few articles that state that the brain function and the right side of body can improve after cranioplasty. Does anyone know how true this is?

it has only been a few days since the surgery but he has began to use his right hand a little bit already, which we think is amazing! Just wondered if this is just coincidence?

Thank you:)

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Maychristine profile image
Maychristine
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13 Replies
S21NTE profile image
S21NTE

Hi Maychristine,

My husband had his cranioplasty in April 2021, this was 17 months after his TBI.

My memory is vague regarding his cognitive improvements but there definitely were some. I can remember commenting and thinking how remarkable it was.

I do however believe that some of it was psychological. He was transfixed on the surgery being the answer to getting better. We naturally still have many deficits and it certainly hasn’t fixed everything, but it lifted his spirits, gave him more confidence and reduced pain significantly. Coughing and sneezing frightened him beyond words. I think it gave him a positive push and he seemed to find a second wind to keep fighting to improve as much as possible.

I hope that you continue to see positive improvements with your Dad. It’s such early days and is a difficult journey to navigate. Wishing you and your family all the very best.

Maychristine profile image
Maychristine in reply toS21NTE

thank you:)

I really hope it will help him to improve but like you said it is still early days . It has been 8 months since his TBI and stroke so I suppose there is still time for improvement. Unfortunately, the rehabilitation unit he is at has told us that they do not think he will ever improve and they think the brain damage is permanent. I guess I’m holding onto hope as I do believe he will get there over time, even just little things.

He can’t speak and doesn’t understand much. He cannot do any basic tasks such as making a tea or drink. However, he is still exactly the same dad to me, his personality is exactly the same! So that gives me hope that he’s still there somewhere, it may just take time.

Thank you for sharing your story . Wishing you and your husband all the best in your journey xxx

DTBI profile image
DTBI

Hi Maychristine,

I had a TBI in France Jan 2014 and had the left side of my skull replaced in Salford Royal on the April.

My physicality wasn’t to bad, I was ‘only 47’ but it took me 4 yrs to get my driving licence back and my brain back working well. I wrote a book via a dictionary to repair my brain & reminds myself daily that there are many adults & youngsters worse ff than me. I am sure your dad will improve but as it is the other side of his head I can’t be of much specific use.

Good luck to you and your dad xx

Maychristine profile image
Maychristine in reply toDTBI

my dad is only 50 so still young too! I’m glad you are doing better, so nice to hear that although it can take years , it can happen.

Thank you! X

cat3 profile image
cat3

Maychristine, I didn't have a craniotomy as my bleed was treated by means of a titanium coil. But over the years others here have reported that, after cranioplasty progress is slow. but speech, movement and mood gradually improved.

If you haven't spoken with the Headway team via the helpline please do. They have the relevant facts of every type of brain injury and procedure ; their contact no is 0808 800 2244 weekdays.

But the first rule of brain injury is that progress is a long, slow process owing to the brain's delicacy and complexity ; your dad is still in the very early stages of that process and needs to rest, drink lots of plain water (v. important for brain health) and take his time in making his way through the disruption of brain trauma.

Progress isn't so noticeable 'til we look back. Stay around for support m'love and do keep us updated... Cat x

Maychristine profile image
Maychristine in reply tocat3

hi cat,

Thank you!

I have read the same and I really hope it is the case for my dad , I guess it’s me holding onto hope, but it’s always good to have hope.

He is in a level 1 rehabilitation unit, it is amazing there and he is really happy! Eating and drinking lots so that’s good. Not much rest as he is very hyper active and hates to sit down for long- but that was how he was before his brain injury!

Your right that progress isn’t noticeable untill we look back: I mean the progress he has made since we nearly lost him while he was in a coma is amazing, I think I forget that sometimes.

Thank you so much xx

cat3 profile image
cat3

Honestly, from what you've described M/c, your dad is active and dynamic which is a big positive, so do hold onto your hope m'love ! All my best wishes for better days to come after the cranioplasty settles down, and as more time passes....

Stay in touch... 😐Xx

Juniorbhoy profile image
Juniorbhoy

Hi there my husband was seriously assaulted Dec 2019. Craniotomy had to be done to relieve pressure. Then he kept falling and banging his head. He deteriorated very quickly showing symptoms very much like a stroke by being paralysed down the one side. Surgeon decided to replace the skull which was implanted into his Abdomen 5 weeks after the initial craniotomy. We saw a huge improvement over time but unfortunately his speech has not returned. My husband Kevin, also has global aphasia and dispraxia. It is now 3 years and he is still receiving speech therapy twice a week. Kevin couldn't make tea or even a sandwich for himself but after rehab and the final cranioplasy there definately was a huge improvement with his understanding and cognition. When tired he can become slightly confused but unfortunately still no speech. As with your father we were also told far too much damage was done during the attack. Kevin is 54 years old and struggles every day because he can't communicate. I wish your father a speedy recover xx

skydivesurvivor profile image
skydivesurvivor

hi, suffered a tbi in 2000. Have friends like dad. It will take time for him to improve, find bits of the old him. Will need your support which will be trying for u at times. May not know how to thank you?!! But please persist!! Family support is a wonderful much needed tool. Mum n dad cared for me for the rest of their lives, tried to support them when in need. Again all I can inspire u with is SMILE to spite the trying times, hope it will raise a much needed GRIN?!! Good luck… will say thanks on his behalf!!

MrsW69 profile image
MrsW69

Hi, we are in a similar position to you and your dad; my daughter is still in hospital after a TBI plus other injuries. She has had a craniectomy but too early for cranioplasty yet and is struggling to make any progress. In fact she has deteriorated significantly since first coming round from her operations. We are at a loss as to whether this is normal or something is wrong. Any advice or information about your dad’s journey up to this point is much appreciated. I hope he continues to show small signs of improvement. x

Maychristine profile image
Maychristine in reply toMrsW69

hi!

Sorry to hear about your daughter! I know how awful this whole journey can be.

Sounds very similar to my dad. He was showing not many if all any signs of improvement before he had his cranioplasty. He waited 7 months for his. Fortunately, he has really improved since the surgery. His mobility improved, he was walking before just very unsteady. But now he is very mobile and able to use the stairs! He also regained nonevent in his right arm and hand, pretty much straight after the surgery which was amazing, he still struggles with movement in his fingers and his hand is no where near as strong as before but definitely better. As for his cognitive function, we do think there has been a big improvement overall! Although it is hard to asses as he has global asphasia and cannot talk. But he does seem to understand more . He can now do simple tasks such as making hot and cold drinks, washing up. He also is fully able to use the toilet independently. Which he couldn’t before . It may just be timing, but the improvements did happen after his surgery .

His therapy team and doctors all told us there would likely be no improvement after cranioplasty. But I suppose they cannot give any false hope. They have also said my dads case is very rare. He is very lucky to have had these improvements, and it is not always the case for all patients. However, we nearly lost hope in his recovery and now we have hope back!

It is really important to not give up hope. Recovery is possible. And I really do think it just takes time. Even Years and years. The brain is so complex and it can take time to heal.

It took months to see any improvements for us. And from research and hearing other stories, this is sometimes normal. Your daughter will get there with your support!!

My dad has also had lots of months worth of therapy in different hospitals and rehabilitation units, which was a big part in his recovery. I’m sure your daughter will have the same.

He is still no where near ‘recovered’ and is still not at home . Unfortunately, life for him will be very different to before. But from where he was after his injury, he has made amazing progress.

I really wish you and your daughter all the best . Try and hold onto hope, things will get better.

Always hear if you need some advice or a chat !! Xx

MrsW69 profile image
MrsW69

Thanks for your response. At the moment my daughters speech has gone from clear and concise after her brain surgery to slow, slurred and more laboured every day, sometimes she can barely speak. She also now has new symptoms such as tremors which she didn’t have before and drools and is unable to clear food from her mouth as well as she could in the first few weeks. I know your dad is unable to speak but did he have any of the other symptoms or any new symptoms that started weeks or months later which weren’t there to begin with? I can’t seem to get any answers from doctors as to whether this is normal or why she would be deteriorating.

Thanks x

Maychristine profile image
Maychristine in reply toMrsW69

hi.

That must be hard for you. It’s a complicated journey. Thinking back to dad after he first had his accident, I do remember some of these things also happening. We definitely saw some deterioration such as in his arm. He could move it slightly before and then it just seems to get worse. He also had a tremor in his arm after a few months which was intitally there. The same with drooling and not clearing food in his mouth! We definitely only began to notice these things after a few months and they were not there to begin with. I think we also asked the doctors and nurses and they wasn’t able to answer us. I don’t know why this was but I assume maybe it happens when the patients being to start recovery process ? For us, it was once dad begin a small amount of rehabilitation and getting out of bed. Maybe it triggered it. But after the surgery these have all gone now. He no longer drooled and can clear the food from his mouth when eating.

It’s strange I actually forgot about these things happening untill your reply. So try not to worry so much! But question the doctors and make sure they are aware . We found that you really have to get on at them sometimes for them to take these things seriously.

He also had major deterioration in his mobility back in September. This was due to being placed in an elderly ward in hospital while waiting for a bed space for rehabilitation. But he is ok with that now.

With your daughters speech, each day is different and it could be down to tiredness or frustration sometimes that makes it worse on particular days. We still find with dad now that he has good days and bad days. The bad days can be so hard still.

I hope this helps!

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