Re: 14 year old son 2 nd C-Toma

[Guest guest]

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 AMSubject: 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

[Guest guest]

Both of my children have had problems with ear infections and multiple sets of

tubes and adnoids removed. My oldest had his first ear infection at 3 months

and my youngest had his first when he was 6 weeks old. My oldest got his first

set of tubes at 10 months old and my youngest got his at 4 months old. My

oldest son out grew his problem when he was 12 year old.

My youngest son had canal wall down surgery for cholesteotoma last year and had

2 of his hearing bones removed, his taste nerve severed and had a large hole in

his ear drum repaired and his disease was extensive. He didn't have any pain at

all with this surgery. At times when he didn't have tubes and his ear drum

would burst from ear infections, he never complained of any pain. I feel so bad

for you and your son, it must be so hard to see him suffer and I'm sorry to hear

your daughter is having problems too. I had never heard of cholesteotoma and

was shocked to find out my son had this disease. He was in getting his tubes

removed last summer and the surgeon said he couldn't do anything with his left

ear that he had cholesteotoma. Too bad he didn't figure this out before he put

him under for surgery, that was a total waste of time. We had to get a new

doctor quickly and schedule more surgery last summer. He did get a CT scan at

the end of May this year which showed he is free of the disease for now. He's

is trying to get used to wearing a small hearing aid which isn't going to well.

He has a mild hearing loss which is a miracle, he should have had a severe loss

with 2 hearing bones removed. He can have reconstructive surgery to put in

prosthetic hearing bones (malleus and incus) but since his hearing isn't too

bad, we didn't know if it was worth the risks that go along with the surgery. I

have never had an ear infection but my husband did and had to have his adnoids

and tonsils removed because of them so I do think the ear infection problems are

hereditary.

>

> 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

>