Cranioplasty revision surgery

[Loveblue123]

My son had a craniotomy following a TBI in December 2021, he subsequently had a cranioplasty using his bone flap in May 2022. He usually isn't aware of his scar but in the last week or so has had a tingling sensation in his scar and headaches. I'll be mentioning this at his appointment in early March with his neurorehab consultant as his GP wasn't much help. I am really scared that he will need revision surgery and wondered if any of you have had a similar experience. Thank you x

[Spridget]

My craniotomy scar had strange 'creaking' and throbbing sensations for the first month or so after the staples were removed- it wasn't anything to worry about at the time, just tension in the skin easing and settling back into place.

Five months later and I now get intermittent soreness and discomfort at the scar site, sometimes in sync with my headaches, sometimes not. Overall it's healed up very well, though. I am speaking to my consultant on Wednesday this week- I will be asking about this specifically anyway so I will let you know what they say!

[Loveblue123 in reply to Spridget]

Thank you, really appreciate it! My son's cranioplasty was almost 3 years ago which is why I'm so concerned.

[DTBI]

I had my initial craniotomy surgery in France January 2014, when they removed nearly half my skull. As the French simply bin the bone, I had it replaced in Manchester with titanium in the April.

Apart from it being different for the first few weeks it has been fine despite banging it a few times gardening. I am conscious it isn’t a perfect skull, it has a small Alps in the centre of my head, but aside from that very pleased with it.

Sorry I’m not being perfectly helpful, simply wanted you to know about my craniotomy experience. x

[Loveblue123 in reply to DTBI]

Thank you, so glad to hear you have had a good outcome x

[Tina777]

This may not be helpful, but....

I had craniotomy in 2012 and for many years, had what I think was normal discomfort, sensitivity and pain with the scar. Around the 10 year mark, the pain became much more noticeable and a lump developed that was painful to touch.

Being the back of my head, I couldn't see it to check therefore, asked several family and a nurse friend to look at it, check for information etc. Was assured by all it was fine and the pain was probably scar tissue so I endured it for a further year.

At a regular annual neuro check, I mentioned the painful lump.

Neurologist arranged a prompt CT scan which revealed a screw holding the the lift-out triangle of scull in place had started making its way out.

Was advised a surgical procedure to remove, which I undertook.

All went well. I am a little disappointed now, to be unable to honestly say Im"my head has a screw loose!"

Sending your son my best wishes ❤️

[Loveblue123]

Thank you for sharing, this is quite reassuring x I'm glad to hear you don't have a screw loose! 😊

[HopeForChris]

HiyaNo specific experience here exactly, but if headaches and tingling continues, maybe reach out to neuro consultant in case they suggest coming in sooner or for a scan.

Best wishes.x

[Catperson18]

As one of the comments above I had a titanium plate in March 2022. Funnily enough i have been getting a little soreness recently which I have put down to the cold weather. I haven’t been getting headaches so that is worth mentioning. Being an over thinker I did a lot of research (probably not helpful) before I had the procedure and didn’t see many posts saying there were issues later down the line. Just a short time after.

I hope all works out ok!

[Loveblue123 in reply to Catperson18]

Thank you, I'm also an overthinker and worry about everything ... especially my son x

[Pony_girl14]

Hi there, I’m new on here but have been battling with similar issues (not craniotomy) from when my son was just 18. In June 21 he was in a car accident, air lifted to St George’s in London & sustained a severe TBI. Life for our whole family has changed overnight & I wanted to reach out as you seem in a similar situation. I hope you get to the bottom of his symptoms & I wish you & your son well on this journey x

[Loveblue123 in reply to Pony_girl14]

Thank you for reaching out, I am so sorry to hear what you are all going through. Like you, life will never be the same again for my son and family and I can truly empathise with the daily struggles. I also wish you and your son well and hope that he progresses. Happy to chat at any time if you need a friendly ear x

[Pony_girl14 in reply to Loveblue123]

I would like that - when the accident first happened I was overwhelmed with support from friends & family, but as time passes, I feel like no one really knows what we’re going through. He made a good physical recovery (walking, talking, eating) but his injuries are hidden and people assume he will be back to the boy he was before the accident, but that boy is gone

[Loveblue123 in reply to Pony_girl14]

We are exactly the same, it's hard for people to understand 😥 I don't know if there is a way to private message on here? x