Re: Re: Any others choose microsuction instead surgery?

[Guest guest]

Since my doctor told me that he couldn't guarantee how much damage had

occurred and that I would probably not fare well without surgery, he

strongly recommended it. When faced with things like a possible brain

abscess and/or meningitis, the choice for me was easy. Also, I had

symptoms that were getting quite annoying and my hearing had failed

badly. I needed to get things taken care of so that I could remain

gainfully employed. I'm a librarian and I absolutely needed my hearing

to converse with patrons.

I was very lucky that I had surgery. My hearing bones were dissolved but

the doc was able to put in a prosthesis. It was massive and that first

surgery took close to eight hours. He was able to get me in good shape

with just one recurrence. I've been doing well for ... maybe six years

now? I go for annual checkups at this point and even though I had CWU,

he suctions out a bunch of stuff from my canal and off of my eardrum.

Last time around I hadn't cheated with q-tips and the suctioning went

much easier.

He caught it earlier in my other ear and I've been through surgery on

that one. I didn't enjoy going through it, but I'm certainly glad it's

behind me. I feel a ton better without all of that infected tissue

bothering me.

My case did so much damage that I can't imagine what would have happened

if I'd let it go any longer. I went undiagnosed for so long and it took

a sharp dropoff in hearing to get me past the primary care physicians

and their antibiotics. I wouldn't recommend putting off the surgery to

anyone. My only delay was in waiting for the end of an academic semester

so it wouldn't have much of an impact at work.

Matt

anony8107 wrote:

>

>

> My cholesteatoma is not micro, it is extensive. I was advised for a

> canal wall down. There is some drawbacks of having the operation: I

> will likely loose some/all hearing on that side, and a risk that the

> facial nerve is hit. Ultimately the decision to operate or not is left

> with the patient, and i choose to wait and see how it develops.

>

> The cholesteatoma has been in my ear for 10 years, but it has not been

> a large suffering. Again, I visit the surgeon every 6 month, have the

> ear cleaned out, and discuss about the situation.

>

> No-one else made such decision?

>

> ***

> > > *

> > >

> > > I've been diagnosed with Cholesteatoma for about 7 years now, and the

> > > disease has been around for many more years now.

> > >

> > > After discussing the situation with the surgeon, I decided for regular

> > > checkups and microsuction, instead of an operation. There is no real

> > > suffering and the hearing is reasonable on that ear. The ear gets

> easily

> > > blocked after each common cold, and I visit the surgeon for

> microsuction

> > > after the cold is over.

> > >

> > > Reading this group, it looks like practically everyone chooses for

> surgery,

> > > either canal wall up or down, which makes me feel an exception.

> > >

> > > Does anyone else chose to manage the Cholesteatoma with regular

> > > checkup/microsuction for a long period of time?

> > >

> > >

> > >

> > > ------------------------------------

> > >

> > >

[Guest guest]

My son had a very aggressive c-toma (and our doc suspects it's the congenital variant) and while it took several years to get it properly diagnosed and understood, once we knew exactly what we were dealing with we realised it needed treatment without much delay. Surgery was scheduled within a month and even though the CT scan didn't look THAT bad, it turned out the bugger was huge (well as huge as the space up there allows - relatively speaking of course!) and he lost 2.5 oscilles and 1 tasting nerve and his matoid bone and attic, and his skull in the area - the doctor said is dura (brain covereing membrane) was exposed. So there really wasn't much more time before it would have become pretty much life threateningly serious...

Due to our experience, I would not wait and delay on surgery. I was even reluctant to wait the additional few months we did before treating the second ear, even though his doc was sure it was a far less extensive c-tome on the other side - and he was right.

It really is a horrid condition.On 20 June 2011 19:23, kfoskett5 <kfoskett5@...> wrote:

 

I think you took most of us by surprised because this was not presented to you as option. Given the amount of damage they can do in short amount of time surgery was required. I can't speak for anyone else but I was miserable when mine was found. A couple people on this board have the ctoma erode bone leading into the brain. A lot of time CT and MRI images don't give a clear picture extent of ctoma, so the damage is more extensive than originally understood.

My doctor explained what it was, that it would continue to grow and it needed to come out. Mine was acquired; it grew extremely large in small amount of time, eating away at all my hearing bones.

If you are comfortable your decision and understand the risk associated with watching and waiting then maybe it the option for you. Personally I think you might be better served getting a second opinion.

Kathy

> > >

> > >I've been diagnosed with Cholesteatoma for about 7 years now, and the

> > >disease has been around for many more years now.

> > >

> > >After discussing the situation with the surgeon, I decided for regular

> > >checkups and microsuction, instead of an operation. There is no real

> > >suffering and the hearing is reasonable on that ear. The ear gets easily

> > >blocked after each common cold, and I visit the surgeon for microsuction

> > >after the cold is over.

> > >

> > >Reading this group, it looks like practically everyone chooses for surgery,

> > >either canal wall up or down, which makes me feel an exception.

> > >

> > >Does anyone else chose to manage the Cholesteatoma with regular

> > >checkup/microsuction for a long period of time?

> > >

> > >

> > >

> > >------------------------------------

> > >

> > >

[Guest guest]

There are 2 scenarios where one might consider microsuction as an alternative.

1. In the very elderly or infirm patient where the risks of surgery/anaesthesia outweigh the risks of cholesteatoma. I have a couple of patients who have chosen this option

2. With very limited disease where all the skin can be cleared out. This is perhaps more the retraction pocket scenario. Sometimes there is a good chance of keeping things under control by doing this although it will frequently progress and require surgery.

Generally however cholesteatoma is a disease where a surgical solution is required. I would be wary of non-surgical treatments and choose them only after a lot of thought.

With best wishes

Mr WareingConsultant ENT SurgeonSt Bartholomews HospitalThe Royal London HospitalThe London Clinic145 Harley StreetLondon W1G 6BJwww.michaelwareing-ent.com

020 7935 1304

From: Jane Fraser <janefraser101@...>cholesteatoma Sent: Tuesday, 21 June 2011, 6:33Subject: Re: Re: Any others choose microsuction instead surgery?

My son had a very aggressive c-toma (and our doc suspects it's the congenital variant) and while it took several years to get it properly diagnosed and understood, once we knew exactly what we were dealing with we realised it needed treatment without much delay. Surgery was scheduled within a month and even though the CT scan didn't look THAT bad, it turned out the bugger was huge (well as huge as the space up there allows - relatively speaking of course!) and he lost 2.5 oscilles and 1 tasting nerve and his matoid bone and attic, and his skull in the area - the doctor said is dura (brain covereing membrane) was exposed. So there really wasn't much more time before it would have become pretty much life threateningly serious...Due to our experience, I would not wait and delay on surgery. I was even reluctant to wait the additional few months we did before treating the second ear, even though his doc was sure it was a far less extensive c-tome

on the other side - and he was right.It really is a horrid condition.

On 20 June 2011 19:23, kfoskett5 <kfoskett5@...> wrote:

I think you took most of us by surprised because this was not presented to you as option. Given the amount of damage they can do in short amount of time surgery was required. I can't speak for anyone else but I was miserable when mine was found. A couple people on this board have the ctoma erode bone leading into the brain. A lot of time CT and MRI images don't give a clear picture extent of ctoma, so the damage is more extensive than originally understood.My doctor explained what it was, that it would continue to grow and it needed to come out. Mine was acquired; it grew extremely large in small amount of time, eating away at all my hearing bones.If you are comfortable your decision and understand the risk associated with watching and waiting then maybe it the option for you. Personally I think you might be better served getting a second opinion.Kathy> > >> > >I've been diagnosed with Cholesteatoma for about 7 years now, and the> > >disease has been around for many more years now.> > >>

> >After discussing the situation with the surgeon, I decided for regular> > >checkups and microsuction, instead of an operation. There is no real> > >suffering and the hearing is reasonable on that ear. The ear gets easily> > >blocked after each common cold, and I visit the surgeon for microsuction> > >after the cold is over.> > >> > >Reading this group, it looks like practically everyone chooses for surgery,> > >either canal wall up or down, which makes me feel an exception.> > >> > >Does anyone else chose to manage the Cholesteatoma with regular> > >checkup/microsuction for a long period of time?> > >> > >> > >> > >------------------------------------> > >> > >

[Guest guest]

Hi Mr Wareing >>  There are 2 scenarios where one might consider microsuction as an alternative.1. In the very elderly or infirm patient where the risks of surgery/anaesthesia outweigh the risks of cholesteatoma. I have a couple of patients who have chosen this option2. With very limited disease where all the skin can be cleared out. This is perhaps more the retraction pocket scenario. Sometimes there is a good chance of keeping things under control by doing this although it will frequently progress and require surgery.Generally however cholesteatoma is a disease where a surgical solution is required. I would be wary of non-surgical treatments and choose them only after a lot of thought.   << Thanks so much for this explanation; it’s totally new to me to hear of Cholesteatoma being managed in this way, but of course it makes sense that not everyone is suitable for surgery due to other issues. It also makes sense on a more personal note in that, according to my ENT Consultant, I have a retraction pocket and he ‘hoovers’ my ear on a regular basis – and I need the microsuction treatment even if I’ve not had so many infections or perforations since my last visit to the hospital, so your comments have helped explain that, too.  Thank you again – it certainly pays to be on this servlist! Kind regards Kazzy From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of WareingSent: 21 June 2011 17:57cholesteatoma Subject: Re: Re: Any others choose microsuction instead surgery? There are 2 scenarios where one might consider microsuction as an alternative.1. In the very elderly or infirm patient where the risks of surgery/anaesthesia outweigh the risks of cholesteatoma. I have a couple of patients who have chosen this option2. With very limited disease where all the skin can be cleared out. This is perhaps more the retraction pocket scenario. Sometimes there is a good chance of keeping things under control by doing this although it will frequently progress and require surgery.Generally however cholesteatoma is a disease where a surgical solution is required. I would be wary of non-surgical treatments and choose them only after a lot of thought. With best wishesMr WareingConsultant ENT SurgeonSt Bartholomews HospitalThe Royal London HospitalThe London Clinic145 Harley StreetLondon W1G 6BJwww.michaelwareing-ent.com 020 7935 1304From: Jane Fraser <janefraser101@...>cholesteatoma Sent: Tuesday, 21 June 2011, 6:33Subject: Re: Re: Any others choose microsuction instead surgery? My son had a very aggressive c-toma (and our doc suspects it's the congenital variant) and while it took several years to get it properly diagnosed and understood, once we knew exactly what we were dealing with we realised it needed treatment without much delay. Surgery was scheduled within a month and even though the CT scan didn't look THAT bad, it turned out the bugger was huge (well as huge as the space up there allows - relatively speaking of course!) and he lost 2.5 oscilles and 1 tasting nerve and his matoid bone and attic, and his skull in the area - the doctor said is dura (brain covereing membrane) was exposed. So there really wasn't much more time before it would have become pretty much life threateningly serious...Due to our experience, I would not wait and delay on surgery. I was even reluctant to wait the additional few months we did before treating the second ear, even though his doc was sure it was a far less extensive c-tome on the other side - and he was right.It really is a horrid condition.On 20 June 2011 19:23, kfoskett5 <kfoskett5@...> wrote: I think you took most of us by surprised because this was not presented to you as option. Given the amount of damage they can do in short amount of time surgery was required. I can't speak for anyone else but I was miserable when mine was found. A couple people on this board have the ctoma erode bone leading into the brain. A lot of time CT and MRI images don't give a clear picture extent of ctoma, so the damage is more extensive than originally understood.My doctor explained what it was, that it would continue to grow and it needed to come out. Mine was acquired; it grew extremely large in small amount of time, eating away at all my hearing bones.If you are comfortable your decision and understand the risk associated with watching and waiting then maybe it the option for you. Personally I think you might be better served getting a second opinion.Kathy> > >> > >I've been diagnosed with Cholesteatoma for about 7 years now, and the> > >disease has been around for many more years now.> > >> > >After discussing the situation with the surgeon, I decided for regular> > >checkups and microsuction, instead of an operation. There is no real> > >suffering and the hearing is reasonable on that ear. The ear gets easily> > >blocked after each common cold, and I visit the surgeon for microsuction> > >after the cold is over.> > >> > >Reading this group, it looks like practically everyone chooses for surgery,> > >either canal wall up or down, which makes me feel an exception.> > >> > >Does anyone else chose to manage the Cholesteatoma with regular> > >checkup/microsuction for a long period of time?> > >> > >> > >> > >------------------------------------> > >> > >

[Guest guest]

Erwin,I'm glad to hear that this is an option for you and perhaps others. Thank you for sharing and enlightening us. I was shocked when you first posted and didn't reply because I had not heard of this technique. For me the extent of damage, pain (one of my two had worn bone down that protects the vein that drains blood from brain and was sitting on the vein; exerting so much pressure it exploded when he went to excise it) and other side effects like severe hearing loss that surgical removal was my only course of action. But maybe others out there will now ask if microsuction is an option for them thanks to your post.Good luck and thanks for sharing,Sent on the Sprint® Now Network from my BlackBerry®From: "anony8107" <anony8107@...>Sender: cholesteatoma Date: Sat, 09 Jul 2011 04:17:22 -0000<cholesteatoma >Reply cholesteatoma Subject: Re: Any others choose microsuction instead surgery? Today I visited my ENT surgeon again for the 6-monthly micro suction (and antibiotics). I brought up this forum discussion and he told me that as long as the pressure in the ear doesn't build up, and I visit him every 6 month, there is no immediate danger. If my surgeon would tell me that my choice is reckless, I would choose for an operation.> I think you took most of us by surprised because this was not > presented to you as option. All options were presented to me.>>Personally I think you might be better served getting a second >>opinion.I have heard the option from three different surgeons now, the first one in the UK. He brought up the benefits and drawbacks of an operation. Now I've had two different ENT surgeons in the USA, and they respected my decision to postpone an operation and choose microsuction instead. Although he recommends a canal wall down operation for me, he respects my decision to postpone it and he told me it is very unlikely that things get worse very soon, as long as the pressure doesn't build up and I visit him evey 6 month.He also mentioned that there are some other people who choose to leave the cholesteatoma in the ear and frequently visit the surgeon for microsuction. According to all three of them, some people have been doing this for several decenia apparently.I can understand that if a cholesteatoma has been doing a lot of damage to you, it seems a very strange decision to leave it there (aside from microsuction).I'll try to keep you up-to-date on my condition, and hope to find someone else who chose the same path.Thanks,Erwin> > > >> > > >I've been diagnosed with Cholesteatoma for about 7 years now, and the> > > >disease has been around for many more years now.> > > >> > > >After discussing the situation with the surgeon, I decided for regular> > > >checkups and microsuction, instead of an operation. There is no real> > > >suffering and the hearing is reasonable on that ear. The ear gets easily> > > >blocked after each common cold, and I visit the surgeon for microsuction> > > >after the cold is over.> > > >> > > >Reading this group, it looks like practically everyone chooses for surgery,> > > >either canal wall up or down, which makes me feel an exception.> > > >> > > >Does anyone else chose to manage the Cholesteatoma with regular> > > >checkup/microsuction for a long period of time?> > > >> > > >> > > >> > > >------------------------------------> > > >> > > >