Re: 14 year old son 2 nd C-Toma, Constant pain, UK, London

[Guest guest]

We are in the uk, near London and he's under a specialist and has been for 5-6

years although only with the current specialist who was recommended by the The

National Childrens Deaf Society, for the last 14 months,

He agrees that my son should not be on Pain meds and wants to get him pain free

the first dr to be as concerned as me.

As we are in the UK we are under the NHS so we don't pay for treatment but

waiting times aren't good, and more and more medicines are not supplied. My

family doctors are brilliant at providing the pain meds in plentiful supply

because there is also restrictions on buying medicines over the counter (two

packets 32 tablets regardless what they are) and i could not buy the medicines

that my son needs

We are hopefully with the right specialist now, We are with Royal College of

Throat, Nose and Ear, Kings Cross, London, under the care of Mr Quinney.

I would like to hear from anyone who has had the same awful pain and from anyone

who has more than one person in the same family affected. Particuarly in the UK.

Thanks for your kind reply and I realise that a lot of people on this forum are

from USA, but this is a condition that can affect anyone in any country.

Thanks for your reply, Jayne

>

> Your child shouldn't have to be on pain meds (that is too sad to me) - What

kind

> of doctor is he seeing?  A general ENT?  or specialist?  I don't know where

you

> live but there are many great doctors.  I am sure if you let us know what

area

> of the U.S. you are in someone will know a great doctor.  Their is relief for

> your child but you need the right doctor.

>

>

>

>

> ________________________________

> From: " jaynesingleton@... " <jaynesingleton@...>

> cholesteatoma

> Sent: Wed, July 21, 2010 8:16:32 AM

> Subject: 14 year old son 2 nd C-Toma

>

>  

> 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

>