Any experiences of facial surgery for tumour

[surgery246]

Any experiences of coping after facial surgery? I had only thought about the operations and not prepared myself for afterwards. Apparently face has to be covered when outside now and wounds/graft has no dressing. How do you look at yourself/put cream on the wounds/cope with the stares and questions. I thought I would just feel relief to have the operations done but I feel awful.

Just bumping this thread for you, @surgery246,

Sorry you're going through such a tough time.

I have no experience but and a bump. Is the hospital able to put you in touch with any support groups? I believe they often have patients who have had E.g. heart surgery and can offer support to those facing it. I would think there must be something similar for (I presume) macillofacial?

Macillofacial

There's an organisation called Saving Faces which might be able to give you some support. Do check out the link - there's a helpline available from 9am to 5pm, with an email service out of hours.

Hi. My surgery and tumor wasn't in my face, it was in my head, my scar is from the top of my head to the middle of my neck, right behind my ear (but not hidden by it unfortunately!). Its not always on show so I appreciate that our situations won't be exactly the same, but I do struggle sometimes as when I have my hair up its very obvious. People ask me questions a lot, more than you'd expect. Especially people I don't know when I'm out and about. It's bloody weird and I hate explaining it. Anything I say only prompts further questions. I feel weird having a major scar, especially as I'm only 21, and I'm going to have this for life. I had my surgery a year ago and to be honest although it's obviously better than it was straight after surgery, it hasn't really changed at all for about 8 months. I'm nervous it will never change and seem less 'visible'. It's difficult but at the point of having surgery I had been in agony for almost 3 years. I will have to have surgery again about every 10 years as well. I just have to remind myself that nothing is worth the amount of pain I was in and it is so much more manageable. There were so many things I'd never be able to do if I didnt have the surgery.

The charity Changing Faces have lots of great advice on answering questions etc, and have a support line you can call as well. I think they can put you in touch with other people who have been through the same kind of surgery as well.

Hi surgery246, sorry you're having a difficult time. It's a long time since I've worked in this area but back then we had nurses on our team who'd been specially trained in medical make up and could teach you camouflage techniques. They could also use electro nerve stimulation to help lift and re-educate any lazy nerves causing drooping/asymmetry.
What has your surgeon said? Have you had a chat about if there's any further improvement possible? You will not be the only person feeling like this, its completely normal.

Thanks for the kind words I will look at the organisations recommended. It is very early days so there will be lots of improvement and in time make up will be an option. However for the moment I cant use sun tan lotion or make up as wounds are new so need to cover my face from the sun. All the hospital said was mine is relatively mild compared to lots but I have not seen anyone with their face covered or new surgery and have been looking as been aware of this for a year. However I have 4 very young kids so don't have the option of not being out everywhere in public and of keeping away from children who will ask questions. I wouldn't be going out if I didn't have to keep the kids lives normal.

If it helps, I have very large and obvious scars on my arm after extensive surgery. Kids are actually much easier than adults - for instance kids will say 'what happened to you' and I'll say 'I had an operation to try and fix my arm' and kids will go 'oh, ok' and thats it. Adults will often go on and on about it, so I have a stock phrase of 'I had an accident and surgery which didn't work, but I don't want to talk about it' for the times I'm not in the mood

Would it help to rehearse a stock answer to any questions? It could be based as much or little on the truth as you chose. I have 4 horizontal facial scars, 2 from major surgey 2 from silly childhood accidents. I have previously said I ran through a barbed wire fence when I didn't want to give a proper answer. I actually must of said this is a drunken state to someone who went on to become a good friend and was surprised that the barbed wire story wasn't true about 10years later.
One of my scars is from a tracheostomy. I worked on the ENT team for over a year before anyone knew & it was only because I pointed my scar out to a patient who was worried about how hers was going to look. The whole ward round turned around to stare at me as they hadn't noticed. In general people aren't very observant but having a stock answer of being attacked by a shark or whatever may make you feel more comfortable.