Tongue reduction for adults

[BobBaker]

Have just had an enquiry from someone who has suffered from macroglossia for around 50 years. Is anyone aware of a tongue reduction operation being performed on an adult? If, so is there any NHS trust in the UK with this experience. All advice would be most welcome.

Bob Baker

BWS Support Group UK

[scousegirl1]

Hi Bob. Possibly might get a quicker response/experiences from the bws f/bk group. or you could try St Louis hospital in the States where Dr Jeffrey Marsh has recently retired from (him being the guru of TR surgery) - they may have done some or know whom in the UK that has done. All the best. Jacinta, NZ

[BobBaker Administrator BWS Support in reply to scousegirl1]

Jacinta

Many thanks for your reply. Am pursuing this through the UK. Our national centre for magroglossia is Great Ormond Street Hospital in London which is for children. Will bear your suggestion in mind though. Thanks once again.

Best wishes

Bob

[Bwsmum2]

Hi bob.

I spoke to the team at GOSH and they have said that as my son is over 16 he has to have his next tongue reduction at University college Hospital london.

Kirsty

[BobBaker Administrator BWS Support in reply to Bwsmum2]

Kirsty

Many thanks for this. Probably too late as I believe the person has already tried UCH. Does your son need the operation? Assume he does from what you say.

Best wishes

Bob

[Bwsmum2 in reply to BobBaker]

Hi Bob. Yes joshua will be having braces and jaw surgery and another tongue reduction. It is heartbreaking at the moment but he is nearly 18 now.

Kirsty x

[BobBaker Administrator BWS Support in reply to Bwsmum2]

Kirsty

Very sorry to hear about Joshua but hope that all will be worth it in the long run. Do please give him our best and say that we are thinking of him.

Best wishes

Bob