Cranioplasty surgery

[Catperson18]

Good afternoon, I hope everyone is enjoying the sunshine as much as possible. It really has helped my mood.

I went to have my out patient appointment Friday, I think I miss understood the reason for the appointment. From what I gather it was to make sure that I was happy to go on the waiting list and to make sure they were happy to perform the surgery.

Part of the consultation was to highlight the risks of having the surgery done, mainly death, meningitis, stroke etc. I am presuming they have to give the worst case scenario but it all seemed a bit grim. I would have thought they wouldn’t offer to do it if it wasn’t safe. It scared me to be honest, but I don’t think I could go through the rest of my life wearing a protective helmet and a big dent in my head and I’m thinking it can’t be any more invasive than the op they did to clear the bleed on the brain.

Does anyone have experience of this procedure? Am I just worrying unduly?

Thanks N

[Painting-girl]

Hello N, I haven't got any experience of this, and I hope someone that has, will answer you soon, but meanwhile it would probably be useful for you to ring the Headway helpline in the morning for a well informed conversation with them. Their number is 0808 800 2244 and they are open in office hours. Good luck, and hope you get some answers soon 🌸

[Catperson18 in reply to Painting-girl]

Thanks, I will give them a call.

[Catperson18 in reply to Painting-girl]

I have just given them a call. They lady on the phone was so helpful and really put my mind at rest.

[Painting-girl in reply to Catperson18]

So glad 😊 They are always good to ring about all sorts of issues, and good for emotions support too

[Skallagrigg]

My son is on waiting list too for this, and it does seem they have to tell you all the bad stuff that MAY happen, they do with any operation now, think it's partly to do with compensation incase you do get a side effect and they didn't tell you but yeah it's scary.very scaryI.ll follow this to hear what people who,ve had it say,

[DTBI]

Hi N, I had my titanium half put in 7yrs ago after having my reshaped head for just over 4 months. It wasn’t a problem for me I appreciated they would need to make me unconscious and it might take them a few hours to redesign it. Still a bit dipped on one side but overall a great Op. I insisted on coming out of hospital next morning. Always been grateful for the lady who made me look normal, worth every penny.

Good look with it👍🏻x

[pozza40]

My husband recently had his in august. He was only in hospital one night, there was alot of swelling and the staples they used to close the wound did look quite gruesome but within a couple of weeks rest,his wound had healed,swelling had gone and his head looked practically back to how it was prior to his stroke. I hope you dont have to wait too long.

[AP_1809]

My dad is currently waiting to have this procedure done, however our hospital still isn't doing them due to covid. Have you been given a date for the operation itself yet? If you have how long has it been between the initial appointment and having the op?

[Catperson18]

I am not sure how long. I am being told 6 to 12 months. But I’m on the very first stages of the waiting list

[Goldz13]

I had my Cranioplasty 5 years ago (4months after my accident and initial surgery) If I can give any encouragement it would be that I found the process to be as smooth as I could of hoped it would be, my advice would be to try not to worry about all that ‘other stuff’ too much if you can, and focus on the thoughts that you’ll get your head back, and your life for that matter….that worked wonders for me and my results were brilliant, only I noticed the slight differences which over time aren’t really there any more 🙂 I think it would be fair of me to say that you should try to prepare for the swelling post op, as that’s not the nicest part (physically or visually) but trust me when I say once it fades along with the headaches that go with it, I’m sure you’ll be delighted with the results and you’ll have a part of yourself back again and can look forward to the future ☺️ Hope this helps and all the best

[Catperson18 in reply to Goldz13]

Thanks for the reply. I called Headway this week and it was great to speak to them. I have just been given a 2nd appointment for a meeting with the Maxillofacial team on NYE. I’ve just been reading through my notes that the hospital made in my diary and I am sure the level of pain meds will help!

[Goldz13]

That’s good to hear, I’ve always found them so helpful in those moments I needed a chat. Glad to hear you have another appointment, all the best until then and yes the meds will definitely play their part for sure! Wishing you well with your journey from here on in.

[S21NTE]

My husband waited 18 months to have his cranioplasty but eventually had it done in September. He only stayed in hospital for 1 night. They have made a really good job and his hair has covered his scar well.

It’s reduced his headaches significantly and restored some balance.

He had jaw issues for the first few weeks, just a bit restrictive in how far he could open his mouth, but that’s resolved naturally. He also says it’s still a bit tender but the surgeon said that’s normal. Def changed things for the better for him as it was really getting him down.

Just make sure you follow the rules to protect it from getting infected and you should be fine.

We are still along way from normality but it’s def one step closer!

Wishing you a short waiting list and speedy recovery.