Max’s ENT consultant just called to say that he does not have papillomatosis. Instead it seems that he has Rhabdomyoma. We are still waiting for confirmation from the Royal Marsden that this is the case, but Mr Daya was pretty confident in the St Georges results.
He described it as a benign growth of muscle tissue that starts near Max’s tonsils, and has completely blocked his upper airway. It is not however what caused the need for the trachy in the first place as it was not present when the trachy was put in.
The concern is that it could continue to grow and compromise his existing airway, so it needs to be dealt with sooner rather than later. He will be having a scan within the next 2 weeks to determine exactly where the growth is, after which he will have surgery to remove it. Obviously, removing tissue in and around the airway is a delicate procedure.
We will be meeting up with Mr Daya hopefully quite soon to discus all the implications.
From the few sites I have looked at about Rhabdomyoma, and from what Mr Daya said, this is an extremely rare condition.
Max likes to keep everyone on their toes!