continuing dizziness after cranioplasty

[LindsayJo]

hello everyone, first off thank you so much for this forum it has helped me and my family enormously

My mom suffered TBI and craniectomy was performed (June 2018), and she just got a titanium mesh skull placed in for cranioplasty. (a month ago)

she feels ok but she feels dizzy and the balance is still off. we heard from doctors that the dizziness will be fixed normally after plasty operation however the dizziness continues (although it's less than before), and we're wondering whether it's because of poor job done by the surgeon..

the issue is that her plasty does not look perfect, especially the front side is a little sunk, it look dark and it's just a little off fit-wise. So we're wondering whether this cosmetic failure is affecting her continuous feeling of dizziness..

Please let me know if you've heard anything similar or you've experienced anything related.. thank you so so much!!

[Kirk5w7]

Hi Lindsayjo, ive not had a cranioplasty i had encephalitis leaving me with an ABI.

What the professionals dont tell you is they dont know how the brain injury has affected the individuals sensory systems. They have no way of knowing until the individual”recovers” and problems become apparent.

If you have read posts on the forum you will be aware that many of us suffer from balance issues afterwards. The vestibular system is often knocked for six in BI and takes a long time to reconnect and hopefully repair, i thought i was winning only to have problems every time i get a cold or something similar. I am havibg physiotherapy from a vision therapist, because in my case its my visual link with the vestibular system that is disturbed. Im 6 years into recovery now and what they also dont tell you is brain injury is for life.

You have to learn to adjust to the new person you have become. What i am saying gere is that there may not have been mistakes made, it may just be this is how your Mum is now. Be prepared is all, return to previous fitness is not the norm.

Janetx

[LindsayJo in reply to Kirk5w7]

Thank you for your reply!! It’s very helpful

[cat3]

Lindsay, I echo all of what Janet has said ; I'm also 6+ years on (from a brain haemorrhage) and still suffer with dizziness despite various treatments.

That's not to say that your mum's dizziness will be permanent, but it might continue to be an issue for the foreseeable future. There are medications which can help, but it's such early days (though might not feel that way) for the cranioplasty to settle.

It's usual apparently for the titanium to show as slightly irregular in shape but it's the material of choice for avoiding rejection or infection. But by all means, if you continue to have concerns, phone the consultant's secretary and ask for a consultation.

Hope things improve to an acceptable level for your mum ; it really is early days m'love. Best wishes to you both, Cat x

[LindsayJo in reply to cat3]

Thank you so much Cat for your message we deeply appreciate it .. from the beginning of her injury i’ve been following this forum and it’s been very helpful.. she was hit by a bicycle and fell behind hitting her back head, and had hematoma in her left and back part of the brain.. she has recovered relatively quickly since then, so we’ve been hoping for her to have an independent life in a near future.. but I understand now that the balance issue takes time to heal.. i’ll continue to update you guys thanks so much ♥️♥️

[cat3 in reply to LindsayJo]

Yes, please do keep us updated Lindsay. 😐 x

[Navillus]

I had dizziness initially and visual disturbance but I’m now nearly a year after and much better. I have a dip where skull is fitted which initially was going to have a infill but been strongly recommended against due to infection risks especially as I had infection problems after craniotomy. If you feel the skull it’s very bumpy and you can feel grooves and screws but again a year along it’s feeling much more natural and I’m not always aware of it like I was in the beginning.

[LindsayJo in reply to Navillus]

Thank you so so much Navillus !! It’s so good to hear your experience and progress, she also has a slight crease and i can feel it when i touch it, but hopefully it will get better! She also had an infection problem prior to this surgery so we’ll leave it as is although we’ll ask about her status when we have follow up next week!! Thank you again for giving us hope! She has been recovering relatively quickly (she’s 56 y/o, she talks and walks alone pretty well) and right now the dizziness/balance seems to be only her problem, so hopefully she will overcome that as you did!! Thank you 🙏🏼🙏🏼🙏🏼

[Navillus in reply to LindsayJo]

The first year is very much strengthening muscles that have been disturbed, reconnecting signals. If at your year review you’re still experiencing problems I would request help or referral to investigate. I use to get a strobe effect off railings when walking past, I use to fall if going down escalators because my brain wouldn’t cope with the differing levels, I use to get double vision, couldn’t walk down ramps without feeling unbalanced but all that has rectified a year on and I can manage now. I didn’t have a TBI as was lucky to find mine before it burst but did have open brain surgery and an infection. I have been using vision apps to practice called luminosity which helped align my vision. Your mums balance may be effected by her vision I don’t know if it may help to try. Best wishes x

[LindsayJo in reply to Navillus]

Thank you so much 🙏🏼🙏🏼 We’ll look into the app as well!! We’ll keep practising and see how it goes! It’s really helpful for us to hear from someone who went through all this, you have no idea!! so thank you 🙏🏼🙏🏼