RE: Re: RE:looking for anyone who understands

[Guest guest]

Hi Sue

That’s both bad and good news, eh?  It’s bad news, in that you

may have another Cholesteatoma, but good news in that you are on the verge of

getting it sorted.  I’m happy for you in respect of the latter at least! J

All the very best to you as you hopefully move forward to a diagnosis

and solution to your pain and suffering.

Kazzy

From: cholesteatoma

[mailto:cholesteatoma ] On Behalf Of Sue Bundy

Sent: 22 September 2010 20:29

cholesteatoma

Subject: Re: RE:looking for anyone who understands

>

> Hi Sue

>

> If you’re still having infections after so long, then do you think

it’s possible you have a recurrence of the Cholesteatoma? Have you been to

see a specialist about these infections and most especially about the fluid

coming out of your ear? I would seek further medical advice, for sure.

>

> You say you wish it hadn’t been done and boy... do I understand that

feeling! However, had it not been done, you would likely be suffering the

effects of the tumour’s growth and the destruction it causes as it grows

within the ear. It’s good you had it removed, but it’s possible it’s

back. Cholesteatoma, it’s removal, effects, and possible recurrence, are a

life-long battle, sadly.

>

> I suffer from the all-too-frequent ear infections, perforations and feeling

of fullness in the ears... whilst the first two are painful (as one would

expect), the latter feels like I would imagine it would feel to have someone

blow balloons up in my ears... it’s so annoying, though not so very painful.

I have irregular bouts of bad balance †" I stumble frequently, especially

if I turn suddenly or am walking on uneven or sloping ground. I have a walking

stick which I use to help me out from time to time †" I find the tripod

effect of my own two feet and the stick helps sometimes †" it helps my

confidence if not my balance, and it gives me the same result... I stay upright

more often than not.

>

> My surgeon told me last month that he feels I may have a recurrence of the

Cholesteatoma in my right ear, and possibly also a new one in my left, too due

to what he has seen under the microscope and hoovered out using micro-suction;

I’ve not yet had scans nor surgery but for now, we’re just managing things

in clinic at the moment, hovering out the debris from my ears as and when it

proves necessary.

>

> Here’s wishing you well.

>

> Kazzy

>

>

>

>

> I went and saw a new consultant today. He is from Australia! very helpful

youngish man now working out of Bristol(Mr Holland) and I hope soon to be based

P/T in Barnstaple Devon. He say's I have a perforated eardrum on the same side

where my C/Toma was. He will 'fix' that for me soon but not before he lets me

have a CT Scan, thank God! He agreed my pain not normal and he fears I have

another C/Toma due to the ear drum being left perforated for so long. I have

had several infections in that ear and it might have tracked back to the inner

ear.

I am so glad I found this site it has given me knowledge and I asked the right

questions today.

I have felt in the past because I'm over 50 consultants brush me aside. This

guy made me feel like a normal human!! he seemed to care and listened to

me.>>