14 year old son 2 nd C-Toma

[Guest guest]

My son Ronan, has just been put forward for surgery to remove his c-toma as hes

had it confirmed on a CT scan that he has it back, he had his first one when he

was 9.

Just to let you know he has always had problems since birth. I knew he was deaf

but no one would listen finally saw a consultant at 4 agreed he was extreamly

deaf, had Glue Ear, had grommets and my sons and our lives transformed, i

thought that was the end of it.

Over the next few years he had more grommts put in at 5, 7, 9 when his first

C-toma found no one explained what this was just named it.

They took the C-toma out put in titianium t-tubes in and sent him home,

Over the next two years Ronan had repeated ear infections and even when no

infection present lots of pain in ear. Eventually the infections turned into

bleeding from ear and blood clots and i realised my son's condition was more

serious than i realised. I researced it on the net promptly took him to A & E

only because he wasn't getting seen by ENT at time, They cleared up infection,

removed blood clots and t-tubes.

The last three years have been hell for Ronan and distressing for me, Ronan's

had constant pain with no infection present, hes on huge amounts of pain relief,

that no child should be on i worry about the long term effects on his body.

He's had so much time of school due to pain, and feeling sick and dizzy. The

pain relief is so strong hes drowsy and sick with it. I have spent many nights

up with him trying to comfort him.

To cut a very long story short the hospital kept trying to put more grommets in

we refused as they haven't helped, his hearing hasn't improved since he was 7.

I asked for a 2nd opinion and that got us to where we are now having had a CT

scan and seen the consultant who had already agreed to operate to investigate

the cause of his without the CT scan results. However CT scan shows C-Toma so

hes being operated on to remove the CT, they don't know how much damage its done

and its been there a long while. They will deal with whatever they find. They

don't know the outcome until they see the damage they will try to correct his

hearing if they can we have also been told he could end up worse.

Its scary, no one understands the condition the schools especially don't and

think you can just get a perscription for it.

To top it all Middle daughter has Glue Ear and grommets didn't work she's 11,

and youngest daughter has had two grommets ops but they have now confirmed that

shes going the same way as my son, and will need reconstrctive surgery further

down the line, she's 8. I dread her ending up in the same pain as my son. I

want my son pain free and leading a normal life.

Has anyone else been through similar or got more than one child with the same

condition. The hospital has confirmed its genetic and comes from their dads

side but as he hasn't brought them up since 7 years ago is an alcoholic and has

no intrest in his kids we can't find out more, we only know that he had Glue Ear

as a child but no other problems. I know of no one else in either family with

this condition.

Thanks for reading, Jayne