Hey everyone,
I had radiotherapy in November for a small benign brain tumour (acoustic neuroma/vestibular schwannoma). Following the treatment, every now and then the side of my face where the tumor is twists and contorts by itself (my eyelid shuts and my mouth is pulled up and to one side like a huge grin) it lasts anything from 30 seconds to 2 minutes and then goes back to normal.
Seconds before it happens I can feel it coming because my bottom lip gets a strange burning & tingling sensation for a few seconds, then the contortion happens.
It first happened one month after radiotherapy, at 1st it was happening roughly every 3 weeks, then every week and now it's a couple of times a day.
I have tried to contact the neuro-oncology nurses at my treatment centre a few times but they are yet to return my calls. I rang my GP and they said they would do an urgent referral to the neuro-oncology team but admitted it was out of their field of knowledge so they didn't offer a guess at what's happening to my face.
So........ have any of you lovely people had a similar after effect of radiotherapy? I suspect it's a bit of pressure on the facial nerves causing the contortion, but I'm a little worried that could it also be growth of the tumour? My follow-up MRI to check how successful the radiotherapy was is scheduled for June.
Thanks, Kathy90
Hi Kathy90 I'm sorry I do not have any personal experience with this, but didn't want to leave your post unanswered.
I am so sorry you are going through this. It sounds awful for you. It would be very hard for anyone to second guess what is happening, but it does sound like a nerve. I hope you get some answers from the neuro team soon, but it is very frustrating that they have not returned your calls and you have had to contact the GP to refer you.
Please let us know how you get on.
Take care.
