Re: new member; old c-toma

[Guest guest]

Hi Phyllis

If the still have the same underlying conditions that caused the first ctoma or if the surgeon failed to remove every last bit of it, then it could recur at any time. It is a slow progressing disease, so if it has recurred, it may have done so years ago, though you wouldn't necessarily be aware of it until it causes overt symptoms or becomes infected etc.

I'd assume that since you have a history of ear problems the balance problems are ear related. It's to be hoped so since other causes of dizziness can be far more serious.

CWD and CWU are both types of mastoidectomy. I think the meatoplasty (widening of the ear canal) that you mention is used more frequently with a CWD. CWD does mean that the mastoid area opens up on to the ear canal and that would mean you should have been having regular suction cleaning over the years. Good luck with the appointment.

Phil

new member; old c-toma

How interesting to find a bunch of people who know what I'm talking about! Usually I have to go through a long explanation.I'm here because I'm wondering if my long ago "fixed" c-toma is coming back to haunt me.The background: Over 20 years ago, I went through 2 ENTs before a third realized what he was looking at. I did a couple of audiograms that indicated my hearing was dropping before the ENT decided surgery was indicated. I don't remember the gory details of the surgery - whether it was CWD or CWU. My reading makes me think it was probably CWD. There was a mastoidectomy as I recall. I remember being amazed at the change in my ear canal. You can drive a truck in there compared to my good ear!The incus was eroded and I believe it was removed, leaving the other two other ossicles to do the job.Overall, it went well and my hearing improved. I had no real after-effects from the surgery, although it would have been nice to know my taste would be affected if only temporarily. But there was never any word about possible recurrence nor was there much emphasis on a lifelong management program. I was told to have my hearing checked every so often. I've been very careful when colds crop up and I run to the dr when there is any hint of fluid or infection. And I work hard to keep the water out of my ear. However I have to confess that I have been neglegent about having an ENT attend to this ear. I had it checked periodically for a number of years. But when I moved, I didn't get around to getting a new ENT. I had no problems, so no strong motivation. I haven't even had many ear infections to make me concerned.What is bothering me now is an ongoing dizziness. It started a couple of months ago. It's not swinging vertigo but more like incessant little turns and bounces. It's not related to changes in position. I had a hard time sleeping last night with the incessant motion in my head. My ear was not high on my list of possible causes for the dizziness since I had never experienced any dizziness either before or after the surgery. But I decided to do some research and found that it could be related.Now that I'm thinking about it (maybe too much so), it seems to me that the ear does feel different. No pain, per se. But a sensation of pressure. The GP said he could see nothing in the way of fluid or anything else that struck him as odd. But he readily admits that he probably doesn't know much about what he's seeing.My goal this week is another trip to the GP to get him to refer me to an ENT. I'd like to hear someone say that there is nothing new cooking up in there.I'd be interested to know if anyone has experienced a recurrence after a long time of being c-toma free. Cheers! Phyllispasmith@...

[Guest guest]

> Hi Phyllis

>

> If the still have the same underlying conditions that caused the

first ctoma or if the surgeon failed to remove every last bit of it,

then it could recur at any time. It is a slow progressing disease,

so if it has recurred, it may have done so years ago, though you

wouldn't necessarily be aware of it until it causes overt symptoms

or becomes infected etc.

>

> I'd assume that since you have a history of ear problems the

balance problems are ear related. It's to be hoped so since other

causes of dizziness can be far more serious.

I'm not sure what I'd like to hear is the cause of the dizziness. I

thought I was done with the c-toma. I'm not sure I want to hear it's

back. But you're right - other causes of dizziness may not be

preferable.

> CWD and CWU are both types of mastoidectomy. I think the

meatoplasty (widening of the ear canal) that you mention is used

more frequently with a CWD. CWD does mean that the mastoid area

opens up on to the ear canal and that would mean you should have

been having regular suction cleaning over the years. Good luck with

the appointment.

I've had more than a few dr's peering in my ears over the past 20-

odd years since the surgery (incl an ENT or two!) and no one has

said I should be getting regular cleanings. But I feel like I'm the

one who's negligent.

I wish I'd had resources like this one back then. I was much younger

(and less obnoxious!) so I didn't have the sense to demand more

information from the dr. It would seem I've been lucky that I've had

no real problems in all this time.

I spent some time this afternoon going through the list archives. I

was fascinated to hear people talk about things I've experienced but

never thought to talk about with anyone for fear of sounding like a

loon. For ex, the 9-volt battery sensation and tinnitus.

How I would have loved having access to a group such as this one at

the time I was learning about cholesteatoma! I considered myself

lucky because I happened across someone who'd been through the

surgery and she was able to give me a head's up on what to expect.

She was the first, and only, person I've ever known who had a c-

toma. It does help to talk to other people.

Phyllis

Phyllis

pasmith@...

[Guest guest]

C-toma...can come back. My doctor told my parents it is almost a life

long condition because it can come back at any time...thus you should

see an ear doc at least once every year or so to check. Go

back...don't wait. It is better to be safe than sorry.