Re: Bone infected

[Guest guest]

Hi Sue,   My daughter had a very large cholestoma at the age of seven and had everything  removed excepta tip of one small bone.  I believe this is all eternal and that they relpace it with fake bones.  You should look normal.  I have heard others say that the ear can look different but people can not tell especially if you have hair that covers your ears.  Try to come yourself down and get some concrete answers from your doctors office to ease your anxiety. This is hard to go through without having all the information. 

Wood  On Thu, Jan 6, 2011 at 10:27 AM, Sue Bundy <sue_bndy@...> wrote:

 

Hi,

I had a C/tome and mastoid removed some years ago now and have an open cavity which is cleaned out on a regular basis. Because they left a perforated eardrum I have had repeated ear infections and over the years this has caused me much pain and discharge.

Eventually I demanded another scan which has shown up the bone between the lining of the brain and my mastoid area to be grey on the scan. The surgeon says this is wrong and the bone might be infected which is dangerous and could lead to meningitus?

I am due for extensive surgery on 15th Feb, they are going to remove my eardrum and seal it up completely as most of the small bones have been eroded previously. At the same time they will remove the 'grey bone area' and I guess replace with a graft of some sort. I know I will then have a much larger cavity which will need regualr cleaning.

Has anyone here experienced such drastic surgery, if so what do they replace the removed bone with? will I have a 'dent' at the back of my head?

Thanks.

[Guest guest]

Hi Sue Firstly, I’d like to apologise to everyone for the length of this message. I’m a 48 year old woman and I live down on the Garden Coast of Kent in England. I had a Radical Modified Mastoidectomy (Canal Wall Down) (removal of the Cholesteatoma), Tympanoplasty (eardrum repair) and Ossiculoplasty (repair or replacement of the ossicles – in my case, replacement) back in 1999 when I was 37 years old. This surgery (all three procedures done in one operation) left me with an open cavity bowl within my ear. Over a period of five or so weeks in 2003, I had a series of ear infections and perforations, which left me quite poorly for some time. During this time, it was mooted by a couple of the many doctors I saw that I might have Osteomyelitis – bone infection – but this was never firmly diagnosed and after many courses of antibiotics – sometimes two or three types of antibiotics at the same time – everything healed. Admittedly, it took about seven weeks before I was fully healed, but I have no lasting effects from this period of illness. On searching the ‘net today, I found the following site giving a clear definition of Osteomyelitis: http://www.mayoclinic.com/health/osteomyelitis/DS00759 - I hope it helps. In your message you said that the Surgeon is going to seal ‘it’ up completely; do you mean he will replace the eardrum with a new one, or pack the middle ear and then seal the entire ear up permanently (i.e. obliterate it)? The only visible signs I have that I have had ear surgery are: 1. a wider than normal entrance to my right ear canal – necessary so that the ENT doctor can hoover out the cavity bowl within my ear and 2. a small white scar (perhaps 1.5cm in length) at the point where the surgeon has rejoined the top of my right pinna (ear flap) to my head – if I look closely, I can see maybe 4 stitch marks... but I really have to look closely. In my case, the surgeon went in at the front of the ear, but depending on the procedures carried out, the incision may be in the crease behind the ear. I don’t have a ‘dent’ at the back of my head at all. From my limited knowledge (and I must stress I’m not medically trained in any way), I believe that any infected bone that may be removed during surgery is removed carefully from the inside outwards, leaving the skull intact. I don’t know whether any bone that is removed from the mastoid area is replaced with anything. I believe that the Dura (the tissue lying under the skull and covering the brain) is only rarely affected by Cholesteatoma, and I also believe that meningitis would only be a concern if the Dura were to be pierced. Again, I stress I’m not medically qualified, so you should get this all confirmed by a properly trained medico (or maybe one of the doctors (Dr Gupta/Dr Wareing) who frequents this list could confirm or correct this). Armed with a little information from the resources available to us (your doctor, the library and the internet – but don’t believe EVERYTHING you read!), support from those who have ‘been there’ (such as on this listserv), and a good Surgeon, you can get through this. If at all possible, find a surgeon who is a Neurotologist – one who specialises in the ears and nerves – rather than ‘just’ an ENT surgeon; the facial nerve runs in the area usually affected by this disease and it helps to have someone who knows what he’s doing. I appreciate that in the UK, we don’t usually have a choice of surgeons at the hospital we’re treated in, but we do (officially, if not in reality) have a choice as to where to have our treatment carried out, so this could be a deciding factor for you. All the very best to you, Kazzy From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of Sue BundySent: 06 January 2011 18:27cholesteatoma Subject: Bone infected Hi,I had a C/tome and mastoid removed some years ago now and have an open cavity which is cleaned out on a regular basis. Because they left a perforated eardrum I have had repeated ear infections and over the years this has caused me much pain and discharge.Eventually I demanded another scan which has shown up the bone between the lining of the brain and my mastoid area to be grey on the scan. The surgeon says this is wrong and the bone might be infected which is dangerous and could lead to meningitus?I am due for extensive surgery on 15th Feb, they are going to remove my eardrum and seal it up completely as most of the small bones have been eroded previously. At the same time they will remove the 'grey bone area' and I guess replace with a graft of some sort. I know I will then have a much larger cavity which will need regualr cleaning.Has anyone here experienced such drastic surgery, if so what do they replace the removed bone with? will I have a 'dent' at the back of my head?Thanks.

[Guest guest]

Donot worry about bone issue, small defects neede not be repace and left as such for body to seal wiht soft tissue

Dr.Arun,India

On Thu, Jan 6, 2011 at 11:57 PM, Sue Bundy <sue_bndy@...> wrote:

 

Hi,I had a C/tome and mastoid removed some years ago now and have an open cavity which is cleaned out on a regular basis. Because they left a perforated eardrum I have had repeated ear infections and over the years this has caused me much pain and discharge.

Eventually I demanded another scan which has shown up the bone between the lining of the brain and my mastoid area to be grey on the scan. The surgeon says this is wrong and the bone might be infected which is dangerous and could lead to meningitus?

I am due for extensive surgery on 15th Feb, they are going to remove my eardrum and seal it up completely as most of the small bones have been eroded previously. At the same time they will remove the 'grey bone area' and I guess replace with a graft of some sort. I know I will then have a much larger cavity which will need regualr cleaning.

Has anyone here experienced such drastic surgery, if so what do they replace the removed bone with? will I have a 'dent' at the back of my head?Thanks.

[Guest guest]

--- Thank you Kazzy and of course Dr Gupta.

They are sealing up the eardrum completely as my hearing is not good in that ear

anyway and as I am 'older' I guess it doesn't matter much anymore to me.

I have had a catalogue of problems ever since the first C/Toma was removed, my

balance has never been good and I suffered much pain in my face on the same side

as the op, then I developed Polymyalgia, I know not related but my own GP said

it could have been kick started by the op. I am free of pain in my face and have

at long last got over the polymyalgia now. In fact I walk a mile a day to get

fit for this next op.

My balance is my main issue here, although not dramatic if I turn around too

quick I'll fall or wobble and many think I've had 'one too many!'

I do think this whole C/Toma thing needs much looking into with the after

effects it has on different people. It is almost life changing for some and

needs more tea and sympathy!!

As you say Kizzy, in the UK we are limited to what surgeon we can have but I

think I have at long last found a good one that I have faith in.

Thanks for the reply's. My op date is 15th Feb and already I'm remembering the

packing in the ear, sleepless nights and the pain afterwards. Such Joy!

[Guest guest]

Hi Sue I’m still at a loss as to what you are actually having done when you have surgery. When you said you are having the eardrum sealed up, that sounds to me just like a tympanoplasty – an eardrum repair, often necessary when the eardrum is perforated because sounds vibrate off the membrane so much better when it’s complete, rather than when there’s a hole in it. Does this sound like what you’re having done? All the very best to you Kazzy From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of Sue BundySent: 10 January 2011 11:21cholesteatoma Subject: Re: Bone infected --- Thank you Kazzy and of course Dr Gupta.They are sealing up the eardrum completely as my hearing is not good in that ear anyway and as I am 'older' I guess it doesn't matter much anymore to me.I have had a catalogue of problems ever since the first C/Toma was removed, my balance has never been good and I suffered much pain in my face on the same side as the op, then I developed Polymyalgia, I know not related but my own GP said it could have been kick started by the op. I am free of pain in my face and have at long last got over the polymyalgia now. In fact I walk a mile a day to get fit for this next op.My balance is my main issue here, although not dramatic if I turn around too quick I'll fall or wobble and many think I've had 'one too many!'I do think this whole C/Toma thing needs much looking into with the after effects it has on different people. It is almost life changing for some and needs more tea and sympathy!!As you say Kizzy, in the UK we are limited to what surgeon we can have but I think I have at long last found a good one that I have faith in.Thanks for the reply's. My op date is 15th Feb and already I'm remembering the packing in the ear, sleepless nights and the pain afterwards. Such Joy!

[Guest guest]

Hi, Sue,

My daughter had a bone infection throughout the middle ear and mastoid when she was five. She had three surgeries just related to the infection and associated regrowth of cholesteatoma--for some reason, infection causes any residual disease in her to grow back quickly and aggressively. Anyway, she had to have a lot of scraping and cleaning done in there, and the bone was very fragile for a while, but now when the surgeon goes in there, there is nothing remarkable. The bone just regrew over time to where those parts look pretty normal inside. There is no difference to the outside of her ear or surrounding area, in spite of 13 total surgeries-she is almost 8 now, and she had her first surgery at age 2. Her infection required longterm IV antibiotics, which we did at home. We were just thrilled to get away from the hospital for a while. Now it is all just a distant memory. She only remembers how nice every one was and the extra fun we had that summer, realizing that each of our four precious children are amazing gifts!

 

We are eight months out from the last surgery, and things look good so far!

On Mon, Jan 10, 2011 at 12:44 PM, Kazzy <kazzy@...> wrote:

Hi Sue

 

I’m still at a loss as to what you are actually having done when you have surgery.  When you said you are having the eardrum sealed up, that sounds to me just like a tympanoplasty – an eardrum repair, often necessary when the eardrum is perforated because sounds vibrate off the membrane so much better when it’s complete, rather than when there’s a hole in it.  Does this sound like what you’re having done?

 

All the very best to you

 

Kazzy

 

 

 

 

 

 

From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of Sue Bundy

Sent: 10 January 2011 11:21cholesteatoma Subject: Re: Bone infected

 

 

--- Thank you Kazzy and of course Dr Gupta.They are sealing up the eardrum completely as my hearing is not good in that ear anyway and as I am 'older' I guess it doesn't matter much anymore to me.

I have had a catalogue of problems ever since the first C/Toma was removed, my balance has never been good and I suffered much pain in my face on the same side as the op, then I developed Polymyalgia, I know not related but my own GP said it could have been kick started by the op. I am free of pain in my face and have at long last got over the polymyalgia now. In fact I walk a mile a day to get fit for this next op.

My balance is my main issue here, although not dramatic if I turn around too quick I'll fall or wobble and many think I've had 'one too many!'I do think this whole C/Toma thing needs much looking into with the after effects it has on different people. It is almost life changing for some and needs more tea and sympathy!!

As you say Kizzy, in the UK we are limited to what surgeon we can have but I think I have at long last found a good one that I have faith in.Thanks for the reply's. My op date is 15th Feb and already I'm remembering the packing in the ear, sleepless nights and the pain afterwards. Such Joy!