No brain flap post craniotomy and 2nd brain washout surgery

[Susie32]

I would be grateful to hear the experience of anyone who is living with no bone flap. I got an infection after craniotomy and had to have an emergency brain washout five weeks later as there was no aftercare due to the lack of NHS resources currently. I now have to decide whether to have a cranioplasty to protect my brain and restore the shape of my head. It seems that there are risks either way and I can't quite face the thought of further surgery.Thank you to anyone who can help me a little to make this difficult decision.

[OF_codown]

hi susie I had very similar experience to yours. Craniotomy in jan to remove benign tumour, then infection in march with ‘wash out’ and bone flap removed. I was due to get plate inserted in August but got fungal infection in finger nails so op was delayed to early October. I must say I couldn’t have lived with the cavity in my head & the worry of brain not protected. I’m doing great now and came through all surgeries with no real side effects. My focus & concentration aren’t great but that’s to be expected apparently. I’m Looking forward to an uneventful 2023

Just to add I found the infection treatment the worst experience of all (I was 6 weeks in hospital on iv antibiotics). The final cranioplasty was the easiest op (even tho the plate didn’t fit right & they had to resize it in theatre)- I was told to expect 10 days in hospital for last op but was out in 5

[Susie32 in reply to OF_codown]

Hi OF_codown, Thank you so much for your reply. I really appreciate it and it really helps me to know of someone who understands this kind of experience. I must say that I am finding it very hard to live with the cavity also, and it's very uncomfortable and a constant reminder. I had a similar infection experience and it has left me quite depressed. My surgeon has said the plate is mostly cosmetic, but I don't think that's entirely true from the research I've done. May I ask what the plate feels like? Also, I've been told that the cranioplasty is a higher risk surgery than the first, which worries me a lot. Thank you again and all the best for an uneventful 2023

[OF_codown in reply to Susie32]

hi susie- I’ve never thought of the cranioplasty as purely cosmetic- psychologically (for me) it’s protection for my brain. It feels the Same as the rest of my skull & thankfully my hair is growing back over it. It also makes a huge difference to my mental heat to not have the cavity. I was never advised of any increased risk ftom that operation- all ops carry risk. The only thing I found slightly more difficult was having too much time to think about this op ( as my first two were emergency ops)

[Susie32 in reply to OF_codown]

Thank you so much. I can't tell you how helpful this is to me. I don't think I can live with the cavity either. I wish you a healthy future and thank you again for taking the time to reply to me.