Re: Chances of cholesteatoma in both ears

[Guest guest]

My son had c-toma in both ears. Our doc suspects my son had congenital (not acquired) c-tomas, which would probably explain why he had the issue in both ears.My son also had CWD with ossicle removal, nerve removal, radical modified mastoidectomy and tympanoplasty.

JaneOn 5 October 2011 09:54, risky_fairy <risky_fairy@...> wrote:

 

Hi,

I posted first in August shortly after my daughters first op. after which we were told she had an extensive c-toma which had destroyed the stapes. She had canal wall down surgery (through the ear canal rather than behind the ear).

At her first post op. check-up 4 weeks after the surgery the consultant informed us she had actually lost all her ossicles as a result of the c-toma. Some reconstructive work to the inside walls of the ear was done during the op and she also had her eardrum reconstructed. This surprised me as I'd not heard of this being done on canal wall down surgery. I thought they'd keep it open to have good viewing access into the ear during following check-ups. Has anyone else had this done? How will they now check to see if the c-toma has returned?

There are positives to this. She can now get her ear wet (swim and shower) without ear protection.

I know I should have asked the consultant at the time but there was a lot of information to take in. Her next check-up is December.

Also, I've heard accounts of people who have had c-toma in both ears. How common is this? And what are the chances of people getting it in both ears? Are there any factors that increase the chances of this occurring?

Thanks for reading.

[Guest guest]

Hi :

After having a cholesteatoma removed and reconstruction done in my left ear in

2004, I was diagnosed this year with c-toma in my right ear and am scheduled for

surgery on Oct 13th. I'm not sure how common it is, but my guess is the c-toma

has occurred in both my ears due to my eustachian tube dysfunction. My left ear

has been c-toma free for over 7 years, so hopefully my wonderful doctor will be

able to do the same with my right ear!

Regards,

Dave

>

> Hi,

> I posted first in August shortly after my daughters first op. after which we

were told she had an extensive c-toma which had destroyed the stapes. She had

canal wall down surgery (through the ear canal rather than behind the ear).

>

> At her first post op. check-up 4 weeks after the surgery the consultant

informed us she had actually lost all her ossicles as a result of the c-toma.

Some reconstructive work to the inside walls of the ear was done during the op

and she also had her eardrum reconstructed. This surprised me as I'd not heard

of this being done on canal wall down surgery. I thought they'd keep it open to

have good viewing access into the ear during following check-ups. Has anyone

else had this done? How will they now check to see if the c-toma has returned?

>

> There are positives to this. She can now get her ear wet (swim and shower)

without ear protection.

>

> I know I should have asked the consultant at the time but there was a lot of

information to take in. Her next check-up is December.

>

> Also, I've heard accounts of people who have had c-toma in both ears. How

common is this? And what are the chances of people getting it in both ears? Are

there any factors that increase the chances of this occurring?

>

> Thanks for reading.

>

>

>

[Guest guest]

Hi I had my Cholesteatoma diagnosed and removed back in 1999. I had three procedures done in one surgery: radical modified mastoidectomy (canal wall down – through the ear, not from behind), tympanoplasty (repair of the eardrum) and ossiculoplasty (sometimes a repair, but in my case implant of prosthetic ossicles – I believe I had cadaver bone shaped to form a conduction chain of sorts). I had a meatoplasty too (widening of the ear canal) so that the doctor can see more easily into the ear to check for recurrence during my visits to the clinic. Although I have suffered terribly (having around 5 or 6 ear infections/perforations) per year since surgery, along with regular bouts of neuralgia (pain, for which there has to date been no cause found), I’ve had no recurrence of the monster that is Cholesteatoma. Sadly, my ossicular prosthesis failed in March 2003 during a huge infection and multiple perforation when I was laid up for almost a week, barely able to move – even touching my hair hurt. In the November of 2003, I went on to have a Baha implanted and have been a Baha user since. My surgeon repeatedly confirms to me that I am not allowed to get my ear wet, either swimming or showering. I have regular check-ups with my surgeon (a renowned neurotologist) – now mostly 4-6 months apart, depending on how many ear infections I’ve had prior to the check-up. I have also been given the direct contact details of the Aural Care Clinic at my hospital. At each check-up I have with the surgeon, I have microsuction toilet carried out – mostly uncomfortable, but occasionally painful, and sometimes this leaves me dizzy for a short while whilst the doctor hoovers and shortly afterwards. I just lay there with the nurse checking on me until I’m fine, and then get up and join the doctor for discussion about my case. I can’t answer your question about how often bilateral Cholesteatoma occurs; to be honest, I don’t know whether there are any case studies about this. It might be worth doing a search online for this, or perhaps checking reference articles/books in the Science section of your library, to see if any such studies exist – just a thought. I wish your daughter all the very best – and of course all of your family, as it’s not just the person with Cholesteatoma or ear problems who suffers; there’s such a knock-on effect and impact on those close to the patient. Kind regards, Kazzy From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of risky_fairySent: 05 October 2011 08:54cholesteatoma Subject: Chances of cholesteatoma in both ears Hi,I posted first in August shortly after my daughters first op. after which we were told she had an extensive c-toma which had destroyed the stapes. She had canal wall down surgery (through the ear canal rather than behind the ear).At her first post op. check-up 4 weeks after the surgery the consultant informed us she had actually lost all her ossicles as a result of the c-toma. Some reconstructive work to the inside walls of the ear was done during the op and she also had her eardrum reconstructed. This surprised me as I'd not heard of this being done on canal wall down surgery. I thought they'd keep it open to have good viewing access into the ear during following check-ups. Has anyone else had this done? How will they now check to see if the c-toma has returned? There are positives to this. She can now get her ear wet (swim and shower) without ear protection.I know I should have asked the consultant at the time but there was a lot of information to take in. Her next check-up is December.Also, I've heard accounts of people who have had c-toma in both ears. How common is this? And what are the chances of people getting it in both ears? Are there any factors that increase the chances of this occurring?Thanks for reading.

[Guest guest]

Hi Dave I’m so sorry to hear you’re suffering from the dreaded Cholesteatoma again. I remember back when you joined this servlist and were asking questions about it all then. My thoughts are with you – and I wish your surgeon all the best as he helps you fight this dreadful and debilitating disease. All the very best to you Kazzy From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of srfndaveSent: 05 October 2011 16:06cholesteatoma Subject: Re: Chances of cholesteatoma in both ears Hi :After having a cholesteatoma removed and reconstruction done in my left ear in 2004, I was diagnosed this year with c-toma in my right ear and am scheduled for surgery on Oct 13th. I'm not sure how common it is, but my guess is the c-toma has occurred in both my ears due to my eustachian tube dysfunction. My left ear has been c-toma free for over 7 years, so hopefully my wonderful doctor will be able to do the same with my right ear!Regards,Dave>> Hi,> I posted first in August shortly after my daughters first op. after which we were told she had an extensive c-toma which had destroyed the stapes. She had canal wall down surgery (through the ear canal rather than behind the ear).> > At her first post op. check-up 4 weeks after the surgery the consultant informed us she had actually lost all her ossicles as a result of the c-toma. Some reconstructive work to the inside walls of the ear was done during the op and she also had her eardrum reconstructed. This surprised me as I'd not heard of this being done on canal wall down surgery. I thought they'd keep it open to have good viewing access into the ear during following check-ups. Has anyone else had this done? How will they now check to see if the c-toma has returned? > > There are positives to this. She can now get her ear wet (swim and shower) without ear protection.> > I know I should have asked the consultant at the time but there was a lot of information to take in. Her next check-up is December.> > Also, I've heard accounts of people who have had c-toma in both ears. How common is this? And what are the chances of people getting it in both ears? Are there any factors that increase the chances of this occurring?> > Thanks for reading.> > >

[Guest guest]

I wish ssa would understand the veritgo,pain, vomiting, the constance need for a specialist.From: Kazzy <kazzy@...>cholesteatoma Sent: Wednesday, October 5, 2011 12:58 PMSubject: RE: Re: Chances of cholesteatoma in both ears

Hi Dave I’m so sorry to hear you’re suffering from the dreaded Cholesteatoma again. I remember back when you joined this servlist and were asking questions about it all then. My thoughts are with you – and I wish your surgeon all the best as he helps you fight this dreadful and debilitating disease. All the very best to you Kazzy From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of srfndaveSent: 05 October 2011 16:06To:

cholesteatoma Subject: Re: Chances of cholesteatoma in both ears Hi :After having a cholesteatoma removed and reconstruction done in my left ear in 2004, I was diagnosed this year with c-toma in my right ear and am scheduled for surgery on Oct 13th. I'm not sure how common it is, but my guess is the c-toma has occurred in both my ears due to my eustachian tube dysfunction. My left ear has been c-toma free for over 7 years, so hopefully my wonderful doctor will be able to do the same with my right ear!Regards,Dave>> Hi,> I posted first in August shortly after my daughters first op. after which we were told she had an extensive c-toma which had destroyed the stapes. She had canal wall down surgery (through the ear canal rather than behind the ear).> > At her first post op. check-up 4 weeks after the surgery the consultant informed us she had actually lost all her ossicles as a result of the c-toma. Some reconstructive work to the inside walls of the ear was done during the op and she also had her eardrum reconstructed. This surprised me as I'd not heard of this being done on canal wall down surgery. I thought they'd keep it open to have good viewing access into the ear during following check-ups. Has anyone else had this done? How will they now check to see if the c-toma has returned? > >

There are positives to this. She can now get her ear wet (swim and shower) without ear protection.> > I know I should have asked the consultant at the time but there was a lot of information to take in. Her next check-up is December.> > Also, I've heard accounts of people who have had c-toma in both ears. How common is this? And what are the chances of people getting it in both ears? Are there any factors that increase the chances of this occurring?> > Thanks for reading.> > >

[Guest guest]

I have had c-toma removed from both left (2004) and right (2007) ears. I think

there is definitely a link between eustachian tube dysfunction and c-toma. I

also think smoking has a big impact (I smoked until 2000 and grew up in a

smoking household) and the house I was living in during 2004 had issues with

rising damp (I'd just bought my first place and fixing that was low down on the

list). I now realise this unhealthy environment meant I took ages to shake off

my ear infections which aggravated the underlying conditions and drove the

c-toma

All's well that end well though - I have awesome hearing aids now, a wonderful

fiance and a great job and so feel utterly blessed to have come through c-toma

and all that comes with it. I still get ear 'grumbles' but I recognise the signs

and act fast now

Thanks for reading this. Matt

Sent using BlackBerry® from Orange

Re: Chances of cholesteatoma in both ears

 

 

Hi :

After having a cholesteatoma removed and reconstruction done in my left ear in

2004, I was diagnosed this year with c-toma in my right ear and am scheduled for

surgery on Oct 13th. I'm not sure how common it is, but my guess is the c-toma

has occurred in both my ears due to my eustachian tube dysfunction. My left ear

has been c-toma free for over 7 years, so hopefully my wonderful doctor will be

able to do the same with my right ear!

Regards,

Dave

>

> Hi,

> I posted first in August shortly after my daughters first op. after which we

were told she had an extensive c-toma which had destroyed the stapes. She had

canal wall down surgery (through the ear canal rather than behind the ear).

>

> At her first post op. check-up 4 weeks after the surgery the consultant

informed us she had actually lost all her ossicles as a result of the c-toma.

Some reconstructive work to the inside walls of the ear was done during the op

and she also had her eardrum reconstructed. This surprised me as I'd not heard

of this being done on canal wall down surgery. I thought they'd keep it open to

have good viewing access into the ear during following check-ups. Has anyone

else had this done? How will they now check to see if the c-toma has returned?

>

> There are positives to this. She can now get her ear wet (swim and shower)

without ear protection.

>

> I know I should have asked the consultant at the time but there was a lot of

information to take in. Her next check-up is December.

>

> Also, I've heard accounts of people who have had c-toma in both ears. How

common is this? And what are the chances of people getting it in both ears? Are

there any factors that increase the chances of this occurring?

>

> Thanks for reading.

>

>

>

[Guest guest]

Thanks Kazzy, this group has always been very helpful!

Dave

>

> Hi Dave

>

>

>

> I'm so sorry to hear you're suffering from the dreaded Cholesteatoma again.

> I remember back when you joined this servlist and were asking questions

> about it all then.

>

>

>

> My thoughts are with you - and I wish your surgeon all the best as he helps

> you fight this dreadful and debilitating disease.

>

>

>

> All the very best to you

>

>

>

> Kazzy