Re: s C toma

[Guest guest]

having worked for the NHS and having a child with bilateral c-toma...trust me

an appointment in April isnt bad going for the outdated system....!!!

a shock i know, but alas true.

i wanted a second opinion for my daughter who had already lost her hearing on

one side, an urgent appointment at the Royal Nose Throat and Ear hospital in

london would have been a wait of six to seven weeks. there is only one

doctor (consultant) there that deals with paediatric c-toma. take into

account the fact that my daughter's GP (general practioner) is a family

friend and also her godfather, i know he would have pushed as hard as he

could to get an appointment....i hope you manage to hurry things along, but

April isnt too bad as the system stands.

the only other thing i can suggest...and it's considered a bit unethical, but

who cares! i do it whenever it's necessary....is to contact the doctor direct

at the hospital. you'll probably only get through to the secretary but

explain what's going on and that you'd like some advice from the hospital doc

rather than the gp. explain that youre concerned that the gp may prescribe

drops or something that will make things worse. most good docs will at the

very least offer you some advice, if for no other reason than to reassure

you. better ones will try and do something about it, either by organising a

script or seeing the patient, but it really does vary.

i wish you the very best of luck.

regards

julie

[Guest guest]

" me2749 " <blackburn@...> writes:

> Hi

>

> My 5 year old son has been diagnosed as having C-toma, after

> the removal of a polyp in his ear canal.

>

> I would love to hear from anyone in the Cambridgeshire area who has

> had any experience of surgery for this conditiion. We are, at the

> moment waiting to see his consultant after having had a CAT scan. We

> have an appointment for April but our GP is in the process of trying

> to bring this forward as s ear is discharging again and he is

> now suffering pain which he has never had before.

>

> Any advice or help from anyone with a young child with this condition

> would be welcome

My understanding of the condition in children is that the c-toma can

grow extremely fast, so an appointment earlier than April would be a

_very_ good idea! I take it this is through the NHS? You might want

to find out how the consultant has classified it, as it sounds like

it's been put down as 'non urgent' - which it clearly isn't!

Let us know how you get on.

--

Pete

[Guest guest]

Hi, Caroline. I'm from the U.S., so unfortunately, I'm not familiar

with health insurance overseas. But I can tell you from experience

with a child who has had numerous recurrences of c-toma, that the

sooner he has surgery, the better (because in children, it tends to

grow rather quickly). My son was not quite 3 years old when he was

first diagnosed. He is now 8 and doing fairly well. We had a few

rough periods, but everything seems to be under control now,

especially since he sees his ENT every few months. I sympathize with

what you are going through and if I can help you in any way, please

let me know. You are in our prayers.

Terri

> Hi

>

> My 5 year old son has been diagnosed as having C-toma,

after

> the removal of a polyp in his ear canal.

>

> I would love to hear from anyone in the Cambridgeshire area who has

> had any experience of surgery for this conditiion. We are, at the

> moment waiting to see his consultant after having had a CAT scan.

We

> have an appointment for April but our GP is in the process of

trying

> to bring this forward as s ear is discharging again and he

is

> now suffering pain which he has never had before.

>

> Any advice or help from anyone with a young child with this

condition

> would be welcome

>

> Regards

>

> Caroline

[Guest guest]

> Hi

>

> My 5 year old son has been diagnosed as having C-toma,

after

> the removal of a polyp in his ear canal.

>

> I would love to hear from anyone in the Cambridgeshire area who has

> had any experience of surgery for this conditiion. We are, at the

> moment waiting to see his consultant after having had a CAT scan.

We

> have an appointment for April but our GP is in the process of

trying

> to bring this forward as s ear is discharging again and he

is

> now suffering pain which he has never had before.

>

> Any advice or help from anyone with a young child with this

condition

> would be welcome

>

> Regards

>

> Caroline

Hi Caroline,

I am wondering if you can help me. My daughter that is 13 months old

had tubes placed in her ears. During the surgery the ENT removed

a " pearly piece of skin from the front of her eardrum so I guess that

would be in the ear canal and not the middle ear. I was wonderng how

your DR presented the polyp that your son had. My ENT seems to be

unconcerned said that it was a colesteatoma but there was no

involvement in the middle ear. So no it was not a c-toma. Basically I

am quite confused and was wondering what you thought since the term

polyp was used. I am new to the area here in Florida and sometimes

dont feel all that confident in the DRs down here. I think I may

suggest that she have a ct scan done and see what results we get from

that. I am the only one that seems concerned so I wonder if it is

needless worry. I have just never heard of this disease and it is

quite frightening. Best of luck with you and your son, God bless. DE

[Guest guest]

Dear Caroline,

I had my surgery in Portsmouth 9 years ago and it took quite a long

time to get anywhere even then!

It cannot hurt to try to bring it forward, especially if you

emphasise that he is in pain. The surgery itself in my experince

isn't too bad, but do make sure you ask questions. As for the

discharge, the only thing that made me feel better was to have some

cotton wool in my ear.

My surgeon did a wonderful job and I have much better hearing now ( I

was very deaf in both ears as a child. The only problems I now face

are ear infections, the occasional pain in my ears, and nver being

allowed to swim. Whilst the NHS my be flawed I cannot thank them

enough for my health and the fact that I can hear.

Please take care of yourself and

Yours sincerely

Suzannah

[Guest guest]

hi...well i'm glad that you have a good GP, not something available to all....

if you're concerned ring addenbrookes...and ask for the consultant's sec.

explain the situation to her and ask for some " phone advice " from the

consultant.

she will at the very least go and speak to him...say that you have been to

the GP, that he is trying to get you an urgent referal and isnt keen to treat

it himself. say that you arent keen for the GP to treat it inany case and

can he offer you advice, appointment, prescription etc....until you finally

get to see him??

the sec should relay the whole story...and if youre lucky, the consultant

will arrnage a much earlier appointment, luckily this always works for

frankie!

hope it works.

julie

x

[Guest guest]

oops...just read the bottom bit of your email properly...good luck with the

appointment!

[Guest guest]

> " me2749 " <blackburn@t...> writes:

>

Pete

Thanks for your advice. I heard today that s consultant will

see him tomorrow, so hopefully we can push things along a bit now.

Things certainly seem to have gone down hill fairly rapidly, but

htnaks to all the advice Ive received from other memebers I can now

go " armed " with knowledge and maybe we can have a date fixed for

surgery in the not too distant future.

Thanks again

Caroline

> > Hi

> >

> > My 5 year old son has been diagnosed as having C-toma,

after

> > the removal of a polyp in his ear canal.

> >

> > I would love to hear from anyone in the Cambridgeshire area who

has

> > had any experience of surgery for this conditiion. We are, at

the

> > moment waiting to see his consultant after having had a CAT

scan. We

> > have an appointment for April but our GP is in the process of

trying

> > to bring this forward as s ear is discharging again and he

is

> > now suffering pain which he has never had before.

> >

> > Any advice or help from anyone with a young child with this

condition

> > would be welcome

>

> My understanding of the condition in children is that the c-toma can

> grow extremely fast, so an appointment earlier than April would be a

> _very_ good idea! I take it this is through the NHS? You might

want

> to find out how the consultant has classified it, as it sounds like

> it's been put down as 'non urgent' - which it clearly isn't!

>

> Let us know how you get on.

>

> --

> Pete

[Guest guest]

> > Hi

> >

> > My 5 year old son has been diagnosed as having C-toma,

> after

> > the removal of a polyp in his ear canal.

> >

> > I would love to hear from anyone in the Cambridgeshire area who

has

> > had any experience of surgery for this conditiion. We are, at

the

> > moment waiting to see his consultant after having had a CAT

scan.

> We

> > have an appointment for April but our GP is in the process of

> trying

> > to bring this forward as s ear is discharging again and he

> is

> > now suffering pain which he has never had before.

> >

> > Any advice or help from anyone with a young child with this

> condition

> > would be welcome

> >

> > Regards

> >

> > Caroline

[Guest guest]

> >

Hi De

It does sound like your daugher could have Ctoma but I would ask this

question of your consultant. I would also do a much research as you

can. Try www.earsurgery.org/cholest.html or

www.sinuscenter.com/choleaao.html

Good lock

Regards

Caroline

Hi

> >

> > My 5 year old son has been diagnosed as having C-toma,

> after

> > the removal of a polyp in his ear canal.

> >

> > I would love to hear from anyone in the Cambridgeshire area who

has

> > had any experience of surgery for this conditiion. We are, at

the

> > moment waiting to see his consultant after having had a CAT

scan.

> We

> > have an appointment for April but our GP is in the process of

> trying

> > to bring this forward as s ear is discharging again and he

> is

> > now suffering pain which he has never had before.

> >

> > Any advice or help from anyone with a young child with this

> condition

> > would be welcome

> >

> > Regards

> >

> > Caroline

>

>

> Hi Caroline,

>

> I am wondering if you can help me. My daughter that is 13 months

old

> had tubes placed in her ears. During the surgery the ENT removed

> a " pearly piece of skin from the front of her eardrum so I guess

that

> would be in the ear canal and not the middle ear. I was wonderng

how

> your DR presented the polyp that your son had. My ENT seems to be

> unconcerned said that it was a colesteatoma but there was no

> involvement in the middle ear. So no it was not a c-toma. Basically

I

> am quite confused and was wondering what you thought since the term

> polyp was used. I am new to the area here in Florida and sometimes

> dont feel all that confident in the DRs down here. I think I may

> suggest that she have a ct scan done and see what results we get

from

> that. I am the only one that seems concerned so I wonder if it is

> needless worry. I have just never heard of this disease and it is

> quite frightening. Best of luck with you and your son, God bless. DE

[Guest guest]

> Hi

Thanks for your advice. I also take the attitude " to hell with

ethics my child come first " My GP has been realy great, I saw him

again on Friday and he did his best to arrange an appointment with

the consultant for the same day, unfortunately our local hospital

doesnt have an ENT department and the consultant only come in to run

a clinic once a week. He did however, give me a copy of a fax that

was sent to the consultant on Thursday with a hand written extra

piece on saying that was in quite a bit of pain and that his

ear was now producing a lot of smelly discharge. (This situation has

got rapidly worse over the last week. He advised me not to go to our

local hospital because thaey have no ENT cover over the weekend, but

if things got realy bad we should take the copy fax to Addenbrookes

where s consultant is based. We have struggle through the

weekend and heard this morning that the consultant will see

tomorrow at our local hospital. Hopefully we can speed things along

a bit now.

Thanks again for your support.

Regards

Caroline

aving worked for the NHS and having a child with bilateral c-

toma...trust me

> an appointment in April isnt bad going for the outdated

system....!!!

> a shock i know, but alas true.

>

> i wanted a second opinion for my daughter who had already lost her

hearing on

> one side, an urgent appointment at the Royal Nose Throat and Ear

hospital in

> london would have been a wait of six to seven weeks. there is only

one

> doctor (consultant) there that deals with paediatric c-toma. take

into

> account the fact that my daughter's GP (general practioner) is a

family

> friend and also her godfather, i know he would have pushed as hard

as he

> could to get an appointment....i hope you manage to hurry things

along, but

> April isnt too bad as the system stands.

>

> the only other thing i can suggest...and it's considered a bit

unethical, but

> who cares! i do it whenever it's necessary....is to contact the

doctor direct

> at the hospital. you'll probably only get through to the secretary

but

> explain what's going on and that you'd like some advice from the

hospital doc

> rather than the gp. explain that youre concerned that the gp may

prescribe

> drops or something that will make things worse. most good docs

will at the

> very least offer you some advice, if for no other reason than to

reassure

> you. better ones will try and do something about it, either by

organising a

> script or seeing the patient, but it really does vary.

>

> i wish you the very best of luck.

>

> regards

> julie

[Guest guest]

---

Suzannah

Thanks for your message. We are now seeing the consultant tomorrow,

so hopefully we can push things along now.

His consultant was keen that he continue to swim and mentioned custom-

made ear plugs. I will ask about this when we see him as we live

near to a lot of water and I feel that it is important that all my

children can swim for safety reasons. The conslutant is a keen

swimmer himself and seems to think that he can keep swimming!

Regards

Caroline

In cholesteatoma@y..., " zanstrange " <suzannahstrange@h...> wrote:

> Dear Caroline,

> I had my surgery in Portsmouth 9 years ago and it took quite a long

> time to get anywhere even then!

> It cannot hurt to try to bring it forward, especially if you

> emphasise that he is in pain. The surgery itself in my experince

> isn't too bad, but do make sure you ask questions. As for the

> discharge, the only thing that made me feel better was to have some

> cotton wool in my ear.

> My surgeon did a wonderful job and I have much better hearing now (

I

> was very deaf in both ears as a child. The only problems I now face

> are ear infections, the occasional pain in my ears, and nver being

> allowed to swim. Whilst the NHS my be flawed I cannot thank them

> enough for my health and the fact that I can hear.

> Please take care of yourself and

> Yours sincerely

> Suzannah

[Guest guest]

" me2749 " <blackburn@...> writes:

> Pete

>

> Thanks for your advice. I heard today that s consultant will

> see him tomorrow, so hopefully we can push things along a bit now.

> Things certainly seem to have gone down hill fairly rapidly, but

> htnaks to all the advice Ive received from other memebers I can now

> go " armed " with knowledge and maybe we can have a date fixed for

> surgery in the not too distant future.

That's good news (the appointment) :-) Good luck with your visit to

the consultant - let us know how you get on.

--

Pete

[Guest guest]

> " me2749 " <blackburn@t...> writes:

> Hi Pete

Weve just got back from seeing s consultant. He has found

another polyp and has confirmed that the C-toma has not effected his

hearing bones, so thats good news. We have fixed a date for surgery

of 14 May so its not too long to wait. We have agreed to take what

Mr Grey (our consultant) calls a Combined Approach and go for " Intact

Canal Wall Mastoidectomy " this should mean that can swim

after he has had surgery. It does mean that he will have to go back

into theatre in a years time to make sure the C-toma has not regrown,

but if it has the operation will need to be repeated unless its

regrowth is agressive, then, it will mean having the tradional

Mastoidectomy. So with a bit of luck in three years time and with

three operations under our belt should be able to lead a

totally normal life.

Thanks again for the advice and support

Caroline

> > Pete

> >

> > Thanks for your advice. I heard today that s consultant

will

> > see him tomorrow, so hopefully we can push things along a bit

now.

> > Things certainly seem to have gone down hill fairly rapidly, but

> > htnaks to all the advice Ive received from other memebers I can

now

> > go " armed " with knowledge and maybe we can have a date fixed for

> > surgery in the not too distant future.

>

> That's good news (the appointment) :-) Good luck with your visit to

> the consultant - let us know how you get on.

>

> --

> Pete

[Guest guest]

>

Thanks for the message. We have just got back from seeing s

consultant (Mr Grey). He has found another polyp and has luckily

confirmed that the C-toma has not effected the bones of hearing.

We have decied to go for a combined approach with " Intact Canal Wall

Mastoidectomy " this should mean that can swim after the

surgery. Surgery is booked for 14 May, so its not too long to have

to wait. The surgery will need to be repeated in a years time so make

sure that the C-toma hasnt regrown. If it has it means either a

repeat of the first surgery or having the traditional Mastoidectomy.

Hopefully by the time he is 9 we can put this all behind us and

can lead a normal life.

Thanks again for your help and advice.

Regards

Caroline

oops...just read the bottom bit of your email properly...good luck

with the

> appointment!

[Guest guest]

Dear Caroline,

I am so pleased for your son! That is great about the swimming, trust

me it is a nightmare in summer if you can't, i think i miss that

most.

That is absolutely wonderful. It goes to show though if you are

willing to be a bit pushy you can get a long way in this country! My

mum always rings up the hospital straight away if i have an infection

now, as they know me so well, the doctors can only give antibiotics

and they don't work on my infections anymore.

Take good care of yourself and , and again congratulations on

the good news!

Suzannah

[Guest guest]

" me2749 " <blackburn@...> writes:

>

> > " me2749 " <blackburn@t...> writes:

> > Hi Pete

>

> Weve just got back from seeing s consultant. He has found

> another polyp and has confirmed that the C-toma has not effected his

> hearing bones, so thats good news. We have fixed a date for surgery

> of 14 May so its not too long to wait. We have agreed to take what

> Mr Grey (our consultant) calls a Combined Approach and go for " Intact

> Canal Wall Mastoidectomy " this should mean that can swim

> after he has had surgery. It does mean that he will have to go back

> into theatre in a years time to make sure the C-toma has not regrown,

> but if it has the operation will need to be repeated unless its

> regrowth is agressive, then, it will mean having the tradional

> Mastoidectomy. So with a bit of luck in three years time and with

> three operations under our belt should be able to lead a

> totally normal life.

I'm glad you had a positive visit - it certainly sounds as if the

consultant answered all your questions and concerns :-)

The 'Intact Canal Wall Mastoidectomy' sounds similar to what I had

done - I've to wait until October to have the 2nd op. on my left ear.

The ENT who performed the surgery was happy enough with my ear 5 weeks

after the first op to say that I could quite happily get water into it

from that point on, so with any luck should be swimming by the

Summer :-)

--

Pete

pete@...

-------------------------------------------------------------

MaVerick - Open Source MultiValue Database Management System

Check out the website -> http://www.maverick-dbms.org

[Guest guest]

congrats on the relatively good news for richard! fingers crossed that

things continue to go well and call wall up is a success.

a question?? well two actually, to anyone who can help...

1. francesca has had both canal wall up and down. as far as i'm aware with

canal wall up/intact a " second look " operation is scheduled for the future,

somewhere between 12 and 24 months later....is this the case?

when she had it done, we were told that she'd need the 2nd look, now, two

years plus later....her ENT still doesnt want to do it?

what are other people's experiences??

2. CT/CAT scans...her ENT was never keen to do a CT scan, and infact point

blank refused when we asked, saying that it never gives you enough

information to warrant the radiological exposure to the child. we had a CT

scan done by a different doctor, who we saw for a second opinion. now as we

face all the problems that lead to this scenario two years ago....we're

thinking...should we ask for a CT scan? Francesca's Dad used to work in the

CT department, although not in that field....he asked a consultant in CT, who

says that the radiological exposure is very high, many, many times that of x

rays, and that routine scanning is not recommended.

so....what do we do? any ideas?

currently francesca is having a repeat of the problems of two years ago...in

the run up to her second c-toma on her bad ear...and a 1st c-toma on her good

one. i just cant help worrying that this is happening all over again. she

is being seen next week. he would have seen her sooner, but is holiday...and

doesnt want to hand it over to someone else.

so..CT or not CT?

and how hard should i push for the second look, if that ear is asymptomatic

right now (problem free)?

thanks for listening...any help is appreciated

regards

julie and francesca

[Guest guest]

,

A quick comment on the CT Scans: The first thing my local ENT did

when he suspected c-toma - was to send me for a CT Scan. I believe

he feels they are an important tool in diagnosing c-toma.

I took my CT Scan films with me to the " expert " doctor who did my

surgery. He barely even glanced at them. I asked him about that and

he said CT scans don't really tell you that much.

<<grin>>

who knows!!! But, really I'm not sure that a CT Scan for Francesca

right now should be considered " routine " . If you think she may be

having a repeat of the problems of two years ago ... there are only a

few ways to know for sure and wouldn't the radiological exposure be

better than unnecessary surgery?

Tough call. I don't know what I would do, but if Francesca's doc

doesn't want to do either, I would probably press for the CT Scan

just for peace of mind.

Gool Luck next week,

> congrats on the relatively good news for richard! fingers crossed

that

> things continue to go well and call wall up is a success.

>

> a question?? well two actually, to anyone who can help...

>

> 1. francesca has had both canal wall up and down. as far as i'm

aware with

> canal wall up/intact a " second look " operation is scheduled for the

future,

> somewhere between 12 and 24 months later....is this the case?

> when she had it done, we were told that she'd need the 2nd look,

now, two

> years plus later....her ENT still doesnt want to do it?

> what are other people's experiences??

>

> 2. CT/CAT scans...her ENT was never keen to do a CT scan, and

infact point

> blank refused when we asked, saying that it never gives you enough

> information to warrant the radiological exposure to the child. we

had a CT

> scan done by a different doctor, who we saw for a second opinion.

now as we

> face all the problems that lead to this scenario two years

ago....we're

> thinking...should we ask for a CT scan? Francesca's Dad used to

work in the

> CT department, although not in that field....he asked a consultant

in CT, who

> says that the radiological exposure is very high, many, many times

that of x

> rays, and that routine scanning is not recommended.

> so....what do we do? any ideas?

>

> currently francesca is having a repeat of the problems of two years

ago...in

> the run up to her second c-toma on her bad ear...and a 1st c-toma

on her good

> one. i just cant help worrying that this is happening all over

again. she

> is being seen next week. he would have seen her sooner, but is

holiday...and

> doesnt want to hand it over to someone else.

>

> so..CT or not CT?

> and how hard should i push for the second look, if that ear is

asymptomatic

> right now (problem free)?

>

> thanks for listening...any help is appreciated

>

> regards

> julie and francesca

[Guest guest]

I had a ct scan done and they told me i did not have c-toma then 3 mths later

when they finally did the surgery i was loaded with it and it ate through my

skull so I have to say the ct scan do not show crap.

[Guest guest]

> > congrats on the relatively good news for richard! fingers

crossed

> that

> > things continue to go well and call wall up is a success.

> >

> > a question?? well two actually, to anyone who can help...

> >

> > 1. francesca has had both canal wall up and down. as far as i'm

> aware with

> > canal wall up/intact a " second look " operation is scheduled for

the

> future,

> > somewhere between 12 and 24 months later....is this the case?

> > when she had it done, we were told that she'd need the 2nd look,

> now, two

> > years plus later....her ENT still doesnt want to do it?

> > what are other people's experiences??

> >

> > 2. CT/CAT scans...her ENT was never keen to do a CT scan, and

> infact point

> > blank refused when we asked, saying that it never gives you

enough

> > information to warrant the radiological exposure to the child.

we

> had a CT

> > scan done by a different doctor, who we saw for a second

opinion.

> now as we

> > face all the problems that lead to this scenario two years

> ago....we're

> > thinking...should we ask for a CT scan? Francesca's Dad used to

> work in the

> > CT department, although not in that field....he asked a

consultant

> in CT, who

> > says that the radiological exposure is very high, many, many

times

> that of x

> > rays, and that routine scanning is not recommended.

> > so....what do we do? any ideas?

> >

> > currently francesca is having a repeat of the problems of two

years

> ago...in

> > the run up to her second c-toma on her bad ear...and a 1st c-toma

> on her good

> > one. i just cant help worrying that this is happening all over

> again. she

> > is being seen next week. he would have seen her sooner, but is

> holiday...and

> > doesnt want to hand it over to someone else.

> >

> > so..CT or not CT?

> > and how hard should i push for the second look, if that ear is

> asymptomatic

> > right now (problem free)?

> >

> > thanks for listening...any help is appreciated

> >

> > regards

> > julie and francesca