Re: Question regarding c-toma in both ears Attn Zoe

[Guest guest]

Hi Zoe,

I have had c-toma in both ears. My experience was different from yours but I thought I would send a reply. The diagnosis was many years apart for me. However, I did have to have 2 operations on the left ear just 2 weeks apart. I have found that each healing period is about the same. I didn't find one any quicker than the other. It varies by person as well. I have not had any recurrence of c-toma in either ear. I have had a CWD in both ears. I go to the Otologist every 4-6 months for regular cleanings. Good luck to you.

Ilonaholster42000 <z.chapman@...> wrote:

Hello,Does anyone have any advise or helpful information regarding c-toma in both ears?I had my first c-toma surgery on my right ear last August which has now recurred but I have also been diagnoised with c-toma in my left ear. My doctor wants to do a 2nd operation on my right ear first then 4-6 months later operate on the left ear (depending on how right ear heals). Has anyone had both ears operated on within this time scale and if so how did you manage to cope with pain/sleeping ect. It took about 8 months to lay on right ear properly after 1st surgery, does 2nd surgery heal quicker/slower?Any info would be great!Thanks zoe.

[Guest guest]

Hello Ilona

Thanks for your reply. What is your hearing like now that you have

had sugery on both ears? Also could you explain exactly what they

do when you have CWD, I'm not sure if this is what I may have to

have or not. My previous doc who did my 1st surgery was very vague

and didn't explain anything but I have a new doc now who is a proper

Otologist so hopefully he will keep me more in the picture of what's

happening. Does anyone else have trouble getting info out of their

doctors or is it just a case of them really not being sure until

they open the ear up? Or is the knowing as worrying as the not

knowing?????

Thanks Zoe.

> Hello,

>

> Does anyone have any advise or helpful information regarding c-

toma

> in both ears?

>

> I had my first c-toma surgery on my right ear last August which

has

> now recurred but I have also been diagnoised with c-toma in my

left

> ear. My doctor wants to do a 2nd operation on my right ear first

> then 4-6 months later operate on the left ear (depending on how

> right ear heals). Has anyone had both ears operated on within

this

> time scale and if so how did you manage to cope with pain/sleeping

> ect. It took about 8 months to lay on right ear properly after

1st

> surgery, does 2nd surgery heal quicker/slower?

>

> Any info would be great!

> Thanks zoe.

>

>

>

>

[Guest guest]

> Hello Ilona

>

> Does anyone else have trouble getting info out of their

> doctors or is it just a case of them really not being sure until

> they open the ear up? Or is the knowing as worrying as the not

> knowing?????

Interesting question. I suppose mileage will vary according to the

Dr you have. Some Dr's are really good at educating their patients.

Others seem to view it as extra work.

My original Dr, who did the surgery, certainly offered up little in

the way of info before and after the surgery. I am probably lucky

that he knew what he was doing and that it worked out so well. It's

only recently that I've figured out what I actually had done.

It is clear, just from reading various people's experiences here on

the list, that the Dr may not know what is going on behind the

eardrum until s/he gets in there and opens things up. It makes some

sense for them not to get patients in a snit until they know what

they're talking about.

I can actually respect a Dr who will say that s/he needs more

information before making any pronouncements. It irks me when GPs

and ENTs look in my ear and say, " Well there's no ctoma there. " I

went through 2 ENTs and a bunch of GPs saying they couldn't see

anything before the last guy *wouldn't* say anything until he had

some scans done.

Now, some Dr's seem to have trouble sharing their secret knowledge

with patients.

I was referred to an ENT recently because I've had intermittent

dizziness that has no explanation. I don't know if the ctoma has

anything to do with it, but it made sense to get a relationship with

a specialist re-established. An Otologist would be preferable, but

an ENT is a start.

While he was peering in my ear, I told him that I was never really

told what it was that was done to my ear and I asked if it would

have been a Canal Wall Down procedure. The ENT stood back and looked

at me in stunned disbelief, " Where did you learn THAT term?! " The

fact that I was right seem to be hard for him to accept.

Now why would it be so shocking for me to know the proper

terminology used for the surgery performed on my own ear!? I think

it is the patient's responsibility to know as much as possible about

their own medical situation.

I have to go back to this ENT next month to have the mastoid cavity

cleaned up a bit. I'm not sure how to approach it since the ctoma is

basically not an issue, but I'd like to get referred on to someone

who is more in tune with ears and isn't quite as surprised by a

patient who wants to be in the loop.

Phyllis