Re: My ENT appointment last Tuesday

[Guest guest]

Hi Colleen

It seems odd that if your ctoma is extensive the doctor would be considering a Canal Wall Up. I realize that as a diver any kind of CWD would be bad news for you. The talk about removing the labyrinth or the cochlear sounds alarming and would constitute a surgery that is far more drastic than anything that is generally used for ctoma. Let's hope it doesn't come to that - the results of the scan you posted earlier don't seem to mention anything about the inner ear

I just thought I'd share how my specialist appointment went last Tuesday. I tried posting this the day after but only half of it was posted for some reason. Hopefully this one doesn't get modified prior to being accepted for posting.Everything I managed to dig up and figure out from my CT scan report was fairly accurate. I'm scheduled for a CWU tympanomastoidectomy for Jan 5th - which is incredibleconsidering the waiting time for most people around here (northern Alberta, Canada). Actually, they had to 'bump' me in just to get me in ASAP. Which means, someoneelse's appointment was rescheduled to probably March or April ... not sure how I feel about that.However, something that the ENT has planned has me concerned. According to the ENT he is going to eradicate all the ossicle bones even it they are intact because the c-toma is that extensive. He mentioned that if he doesn't remove everything the c-toma has come in contact with and every little bit of cell debris, the c-toma will grow back. He reassured me my hearing could be reconstructed if that's all he has to do. However, because of my dizziness, vertigo, and other symptoms he's concerned it has spread into the inner ear. If so, he'll have to remove that too - which there will be no hope for my hearing then.During my appointment I was at a loss for what questions to ask - I went blank. So, after the appointment I typed up a letter and faxed it to him asking a few questions. His secretary called the next day and said he explained everything to me when I was at the office, if I wanted him to answer my questions again, then I'll have to book another appointment and loose my Jan 5th surgery date. She suggested talking to my GP. So, I sent him a copy of the letter and have an appointment with him next week. Hopefully someone will be able to answer my questions!I still haven't heard from the first ENT I seen. I managed to get an appointment this December 19th with him to find out what's up. I still want to get his opinion before I jump into any kind of surgery. This time, I'll be taking my list of questions with me.For all the veterans out there, what's your take on this?Colleen No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.1.409 / Virus Database: 268.15.15/581 - Release Date: 09/12/06

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[Guest guest]

Hi Phil,

I agree. From what he explained and from what I've researched so far, a CWU

just doesn't

jive. However, he didn't use these terms while explaining things to me. He

wrote Canal

Wall Up ... on the surgery requistion form and it's only from my research that I

know what

that means.

Deciphering what he told me, the surgery can start out as a CWU and end up being

a CWD.

Due to my symptoms, he expressed concern about it spreading into the inner ear,

even

though it didn't show up on the CT scan. He wouldn't elabrate on that and when

I asked

questions, he evaded the answers. Even if it's a remote possibility, I would

like to know

the consequences of this scenario but I haven't been able to find any

information on the

net about this. I'm not counting on my GP to get the answers I seek, but I'm

hoping he'll

be able to help.

I'm also really hoping that my symptoms the doc was so concerned about is due to

some

other unrelated or semi-related problem and it's just coincidence. I'm keeping

my fingers

crossed anyway.

Thanks for the input,

Colleen

>

> Hi Colleen

>

> It seems odd that if your ctoma is extensive the doctor would be considering a

Canal

Wall Up. I realize that as a diver any kind of CWD would be bad news for you.

The talk

about removing the labyrinth or the cochlear sounds alarming and would

constitute a

surgery that is far more drastic than anything that is generally used for ctoma.

Let's hope

it doesn't come to that - the results of the scan you posted earlier don't seem

to mention

anything about the inner ear

>

[Guest guest]

Phil, Considering I have had my 11th surgery just recently I will respond as a vetern. The doctor cannot answer all questions till they have gone in. My c-toma I was told did not even show up in ct scans so they are very unreliable and can not always be trusted. Everything you said is correct that they have to remove all of the disease or it will come back. The main thing you need to be concerned with is has your doctor done many of these procedures in the past. The more experienced the surgeon the better chance of getting all of the disease peremantly removed and restoring hearing. Just to let you know they can NEVER do this in one procedure and I have researched this with the medical society and many online websites plus the fact that my doctor teaches the procedure to other doctors. They must always see what damage the disease has done, remove and then go back in 6-12 months

later to complete the process of making sure the disease is truly gone and then restoring hearing. If they tell you they can do it in one shot they are lieing and you will end up like me with c-toma returning 5xs in one ear over a period of 15 years. My current doctor has a 95% reoccurrance rate over 30 years The only 5% that had the return were the ones that did not come back for part two... Hope some of this info helps! Amber Phil <psmorris@...> wrote: Hi Colleen It seems odd that if your ctoma is extensive the doctor would be considering a Canal Wall Up. I realize that as a diver any kind of CWD would be bad news for you. The talk about removing the labyrinth or the cochlear sounds alarming and would constitute a surgery that is far more drastic than anything that is generally used for ctoma. Let's hope it doesn't come to that - the results of the scan you posted earlier don't seem to mention anything about the inner ear I just thought I'd share how my specialist appointment went last Tuesday. I tried posting this the day after but only half of it was posted for some

reason. Hopefully this one doesn't get modified prior to being accepted for posting.Everything I managed to dig up and figure out from my CT scan report was fairly accurate. I'm scheduled for a CWU tympanomastoidectomy for Jan 5th - which is incredibleconsidering the waiting time for most people around here (northern Alberta, Canada). Actually, they had to 'bump' me in just to get me in ASAP. Which means, someoneelse's appointment was rescheduled to probably March or April ... not sure how I feel about that.However, something that the ENT has planned has me concerned. According to the ENT he is going to eradicate all the ossicle bones even it they are intact because the c-toma is that extensive. He mentioned that if he doesn't remove everything the c-toma has come in contact with and every little bit of cell debris, the c-toma will grow back. He reassured me my hearing could be reconstructed if that's all he has

to do. However, because of my dizziness, vertigo, and other symptoms he's concerned it has spread into the inner ear. If so, he'll have to remove that too - which there will be no hope for my hearing then.During my appointment I was at a loss for what questions to ask - I went blank. So, after the appointment I typed up a letter and faxed it to him asking a few questions. His secretary called the next day and said he explained everything to me when I was at the office, if I wanted him to answer my questions again, then I'll have to book another appointment and loose my Jan 5th surgery date. She suggested talking to my GP. So, I sent him a copy of the letter and have an appointment with him next week. Hopefully someone will be able to answer my questions!I still haven't heard from the first ENT I seen. I managed to get an appointment this December 19th with him to find out what's up. I still want to get his opinion before

I jump into any kind of surgery. This time, I'll be taking my list of questions with me.For all the veterans out there, what's your take on this?ColleenNo virus found in this incoming message.Checked by AVG Free Edition.Version: 7.1.409 / Virus Database: 268.15.15/581 - Release Date: 09/12/06 No virus found in this outgoing message.Checked by AVG Free Edition.Version: 7.1.409 / Virus Database: 268.15.15/581 - Release Date: 09/12/06

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[Guest guest]

Hi Amber,

One of my questions to the doctor was how many has he done but again, he evaded

the

answer. He just said many.

He did say he would have to go back in 6 to 12 months down the road to

reconstruct my

hearing.

I was fairly satisfied with everything he had to say about the procedure up to a

point. If it

wasn't for my prior research, I wouldn't have understood a word the doctor said.

Where he

left me hanging was if he had to do anything with the inner ear. As unlikely as

this may

be, he did say it's a possibility. It worries me that he did not want to answer

my questions

and I have not been able to find any information about this on the net.

Does anyone out there know anything about this?

Colleen

>

> Phil,

>

> Considering I have had my 11th surgery just recently I will respond as a

vetern. The

doctor cannot answer all questions till they have gone in. My c-toma I was told

did not

even show up in ct scans so they are very unreliable and can not always be

trusted.

Everything you said is correct that they have to remove all of the disease or it

will come

back. The main thing you need to be concerned with is has your doctor done many

of

these procedures in the past. The more experienced the surgeon the better

chance of

getting all of the disease peremantly removed and restoring hearing. Just to

let you know

they can NEVER do this in one procedure and I have researched this with the

medical

society and many online websites plus the fact that my doctor teaches the

procedure to

other doctors. They must always see what damage the disease has done, remove

and then

go back in 6-12 months later to complete the process of making sure the disease

is truly

gone and then restoring

> hearing. If they tell you they can do it in one shot they are lieing and you

will end up

like me with c-toma returning 5xs in one ear over a period of 15 years. My

current doctor

has a 95% reoccurrance rate over 30 years The only 5% that had the return were

the ones

that did not come back for part two...

>

> Hope some of this info helps!

>

> Amber

[Guest guest]

It looks like your doctor wants to be more cautious and remove more

bone, but it may mean that you won't have to go through this again.

I have just had my second surgery almost 3 weeks ago and I would hope

he was more agressive so it won't come back again.

I had my first surgery just over 2 years ago and a prosthesis put in

place to replace the bone loss. He did explain that even a few cells

left would grow back and despite 2 years of every 6 mos. checkup, my

September checkup I failed the hearing test (on the c-toma

side). " Looking " at it, the doctor felt that my prosthesis was being

rejected (it was askew and poking out the eardrum) however the

surgery showed that not only did it grow back but there was another

one starting.

I'll see what I have for hearing on Thursday when he takes out the

packing. I have a new titanium prosthesis but it was supposed to be

an " improved " rebuild and it became a cleanup/salvage job.

I am afraid that I will have to do this every few years. That may be

what your doctor is worried about. The good may outweigh the bad

perhaps in this case.

God bless and keep you,

Amy

>

> Hi all,

>

> I just thought I'd share how my specialist appointment went last

Tuesday. I tried posting

> this the day after but only half of it was posted for some reason.

Hopefully this one

> doesn't get modified prior to being accepted for posting.

>

> Everything I managed to dig up and figure out from my CT scan

report was fairly accurate.

> I'm scheduled for a CWU tympanomastoidectomy for Jan 5th - which is

incredible

> considering the waiting time for most people around here (northern

Alberta, Canada).

> Actually, they had to 'bump' me in just to get me in ASAP. Which

means, someone

> else's appointment was rescheduled to probably March or April ...

not sure how I feel

> about that.

>

> However, something that the ENT has planned has me concerned.

According to the ENT he

> is going to eradicate all the ossicle bones even it they are intact

because the c-toma is that

> extensive. He mentioned that if he doesn't remove everything the c-

toma has come in

> contact with and every little bit of cell debris, the c-toma will

grow back. He reassured me

> my hearing could be reconstructed if that's all he has to do.

However, because of my

> dizziness, vertigo, and other symptoms he's concerned it has spread

into the inner ear. If

> so, he'll have to remove that too - which there will be no hope for

my hearing then.

>

> During my appointment I was at a loss for what questions to ask - I

went blank. So, after

> the appointment I typed up a letter and faxed it to him asking a

few questions. His

> secretary called the next day and said he explained everything to

me when I was at the

> office, if I wanted him to answer my questions again, then I'll

have to book another

> appointment and loose my Jan 5th surgery date. She suggested

talking to my GP. So, I

> sent him a copy of the letter and have an appointment with him next

week. Hopefully

> someone will be able to answer my questions!

>

> I still haven't heard from the first ENT I seen. I managed to get

an appointment this

> December 19th with him to find out what's up. I still want to get

his opinion before I jump

> into any kind of surgery. This time, I'll be taking my list of

questions with me.

>

> For all the veterans out there, what's your take on this?

> Colleen

>