Surgery Date

[Guest guest]

Hello,

Sorry to hear that things are so extensive. I'm really glad to hear he is putting a tube in the right ear. Putting a tube in my husbands right ear helped him for 2 years. It fell out and eventually he got a small c-toma in that ear but that's a whole nother story. My husband had his hair washed after 2 or 3 days, with the help of his mother. You might need a little help with that for a few days and they do like you to keep the incision dry for about 2 days as well. As far as after that, a cotton ball in both ears (can't get the ear with the tube wet either) sealed off with vasaline is what you need for taking a shower. Some people use ear plugs but I don't know how successful they are.

As far as the hearing loss goes, I can't really help you. All I can say is my husband is alive (his was as close to the brain without actually being in the brain as you want to get). He has a hearing aide but no longer uses it. He didn't get it until he had not heard out of the left ear for 2 years and wore it for less than a year. I asked him what his plans for his hearing aide are and he doesn't know yet.

October 22 is my birthday so I will be keeping you in my thoughts and prayers. Please keep us posted with questions before your surgery and then post as soon as you possibly can after surgery.

Michele

lag4302 wrote:

Thanks , Phil, and Jane,I got the CT Scan results today, looks like the disease is pretty extensive. He has me going in for a tempanoplasty mastoidectomy, but he believes he might have to do a radical mastoidectomy and meatoplasty. My surgery date is October 22, sure not looking forward to it. I have had this disease for a long time and I do suffer symptoms from it, I have had ear draingage, dizziness, headaches and pressure in the ear. The right ear has a retraction pocket in it but doesn't have a C-toma as of yet. The doc is going to insert a tube which he said may or may not help. They gave me post-op instructions, one being that I can't wash my hair for 10 days, I won't be able to stand that. I wash my hair daily, but I could probably stand it for 2 or 3 days. What did everyone else do? I have a shower only, but I do have a long shower hose that hooks on to the original shower, thought I migtht be able to get by with that. What is the best way to keep your ears from getting wet? Do they mean to keep water from getting inside the ear only, what about after sugery and the incision behind the ear, would water cause any problems with the incision?How does everyone deal with the hearing loss.

[Guest guest]

Hi!

Just wanted to say good luck on your surgery. October

22 is a dear friend of mine's birthday too. She'll be

88! That's a good day to have a birthday! Happy wishes

to you too Michele!

About the surgery..I have to have a radical

mastoidectomy, too. I'm afraid of the anesthesia.

That's all. Everything else they can do to me but I'm

so afraid of the anesthesia. See, we all have our

quirks! Anyway, I had a CWU the last time and I guess

it didn't help because I have 50% hearing loss in my

right ear and apparently it won't get better. I've had

hearing problems my whole life so I'm used to it but I

do notice I really rely on my left ear a lot more. I

guess I could look into getting a hearing aid but they

are so expensive. Does insurance cover any of that?

I'm trying to be brave about the upcoming surgery but

it's hard. I try to think of my boss, who is battling

breast cancer for the second time, and to be grateful

I don't have that awful burden to shoulder.

Good luck with the surgery and God bless!

--- Michele <iambored97601@...> wrote:

>

> Hello,

> Sorry to hear that things are so extensive. I'm

> really glad to hear he is putting a tube in the

> right ear. Putting a tube in my husbands right ear

> helped him for 2 years. It fell out and eventually

> he got a small c-toma in that ear but that's a whole

> nother story. My husband had his hair washed after

> 2 or 3 days, with the help of his mother. You might

> need a little help with that for a few days and they

> do like you to keep the incision dry for about 2

> days as well. As far as after that, a cotton ball

> in both ears (can't get the ear with the tube wet

> either) sealed off with vasaline is what you need

> for taking a shower. Some people use ear plugs but

> I don't know how successful they are.

> As far as the hearing loss goes, I can't really help

> you. All I can say is my husband is alive (his was

> as close to the brain without actually being in the

> brain as you want to get). He has a hearing aide

> but no longer uses it. He didn't get it until he

> had not heard out of the left ear for 2 years and

> wore it for less than a year. I asked him what his

> plans for his hearing aide are and he doesn't know

> yet.

> October 22 is my birthday so I will be keeping you

> in my thoughts and prayers. Please keep us posted

> with questions before your surgery and then post as

> soon as you possibly can after surgery.

> Michele

> lag4302 wrote:Thanks , Phil, and Jane,

>

> I got the CT Scan results today, looks like the

> disease is pretty

> extensive. He has me going in for a tempanoplasty

> mastoidectomy, but

> he believes he might have to do a radical

> mastoidectomy and

> meatoplasty. My surgery date is October 22, sure

> not looking forward

> to it. I have had this disease for a long time and I

> do suffer

> symptoms from it, I have had ear draingage,

> dizziness, headaches and

> pressure in the ear. The right ear has a retraction

> pocket in it but

> doesn't have a C-toma as of yet. The doc is going

> to insert a tube

> which he said may or may not help. They gave me

> post-op

> instructions, one being that I can't wash my hair

> for 10 days, I

> won't be able to stand that. I wash my hair daily,

> but I could

> probably stand it for 2 or 3 days. What did

> everyone else do? I

> have a shower only, but I do have a long shower hose

> that hooks on to

> the original shower, thought I migtht be able to get

> by with that.

> What is the best way to keep your ears from getting

> wet? Do they

> mean to keep water from getting inside the ear only,

> what about after

> sugery and the incision behind the ear, would water

> cause any

> problems with the incision?

>

> How does everyone deal with the hearing loss.

>

>

>

[Guest guest]

Thank you Michele for the info. I know I won't be able to wish you a

happy birthday on the 22nd so I will wish you a HAPPY BIRTHDAY now.

How come your husband won't wear his hearing aid? I have heard that

a lot of people don't like them. I think I could probably understand

that, but I would be so grateful to be able to hear better. It is a

lot of work just communicating with people on a daily basis. I think

that a hearing aid would really help.

Thanks , Phil, and Jane,

>

> I got the CT Scan results today, looks like the disease is pretty

> extensive. He has me going in for a tempanoplasty mastoidectomy,

but

> he believes he might have to do a radical mastoidectomy and

> meatoplasty. My surgery date is October 22, sure not looking

forward

> to it. I have had this disease for a long time and I do suffer

> symptoms from it, I have had ear draingage, dizziness, headaches

and

> pressure in the ear. The right ear has a retraction pocket in it

but

> doesn't have a C-toma as of yet. The doc is going to insert a tube

> which he said may or may not help. They gave me post-op

> instructions, one being that I can't wash my hair for 10 days, I

> won't be able to stand that. I wash my hair daily, but I could

> probably stand it for 2 or 3 days. What did everyone else do? I

> have a shower only, but I do have a long shower hose that hooks on

to

> the original shower, thought I migtht be able to get by with that.

> What is the best way to keep your ears from getting wet? Do they

> mean to keep water from getting inside the ear only, what about

after

> sugery and the incision behind the ear, would water cause any

> problems with the incision?

>

> How does everyone deal with the hearing loss.

>

>

>

[Guest guest]

Thanks , wish your friend a happy birthday. From what I

understand, most insurance plans won't cover hearing aids. Such a

shame. So many people need them and can't get them. I guess since

you have been through this surgery before you know a little more what

to expect. This is my first surgery and I am a little bit oblivious

to it all. Did you have trouble with anesthesia the last time? Is

that why you are worried? Hopefully the doctor can ease your fears.

I know that it bothers me some too. But I am sure we will both be

fine.

Thanks , Phil, and Jane,

> >

> > I got the CT Scan results today, looks like the

> > disease is pretty

> > extensive. He has me going in for a tempanoplasty

> > mastoidectomy, but

> > he believes he might have to do a radical

> > mastoidectomy and

> > meatoplasty. My surgery date is October 22, sure

> > not looking forward

> > to it. I have had this disease for a long time and I

> > do suffer

> > symptoms from it, I have had ear draingage,

> > dizziness, headaches and

> > pressure in the ear. The right ear has a retraction

> > pocket in it but

> > doesn't have a C-toma as of yet. The doc is going

> > to insert a tube

> > which he said may or may not help. They gave me

> > post-op

> > instructions, one being that I can't wash my hair

> > for 10 days, I

> > won't be able to stand that. I wash my hair daily,

> > but I could

> > probably stand it for 2 or 3 days. What did

> > everyone else do? I

> > have a shower only, but I do have a long shower hose

> > that hooks on to

> > the original shower, thought I migtht be able to get

> > by with that.

> > What is the best way to keep your ears from getting

> > wet? Do they

> > mean to keep water from getting inside the ear only,

> > what about after

> > sugery and the incision behind the ear, would water

> > cause any

> > problems with the incision?

> >

> > How does everyone deal with the hearing loss.

> >

> >

> >

[Guest guest]

Hi ,

Thanks for the b-day wishes. Larry likes his hearing aide but during the hot months of the summer, his hearing aide would go in and out and he thought that maybe he was getting sweat into it somehow (he works in construction). Due to that, he was afraid he would get moisture in his ear and he has a cwd and didn't want to take any chances. It's starting to get cold here so we will see if he starts wearing it again.

He first got the hearing aide when he had his 3rd surgery, which was the first on the right side. His doctor explained that after surgery he may not hear out of the right ear while the packing was in, etc. He has a maximum conductive hearing loss in the left ear and I think he was terrified of not hearing at all, even if it was only for 2 weeks. He was able to hear right out of surgery so the not hearing never came into play. Sometimes I think he got so used to hearing out of only one ear that it doesn't bother him.

The only reason we were able to get a hearing aide is I found out I could get him a loaner from Oregon Health Sciences University. All we had to do was give them a $150 deposit and that check is just sitting in his file. We have had the hearing aide since Aug '01. Might be something to think about if your insurance won't help.

Just remember you have a whole group of people here that will be supporting you on the 22nd. We just won't be able to crowd the hospital...lol. Between now and then, ask questions and if you want to chat with anyone, a lot of us use Messenger.

Hope this helps. Keep use posted.

Michele

lag4302 wrote:

Thank you Michele for the info. I know I won't be able to wish you a happy birthday on the 22nd so I will wish you a HAPPY BIRTHDAY now. How come your husband won't wear his hearing aid? I have heard that a lot of people don't like them. I think I could probably understand that, but I would be so grateful to be able to hear better. It is a lot of work just communicating with people on a daily basis. I think that a hearing aid would really help.Thanks , Phil, and Jane,> > I got the CT Scan results today, looks like the disease is pretty > extensive. He has me going in for a tempanoplasty mastoidectomy, but > he believes he might have to do a radical mastoidectomy and > meatoplasty. My surgery date is October 22, sure not looking forward > to it. I have had this disease for a long time and I do suffer > symptoms from it, I have had ear draingage, dizziness, headaches and > pressure in the ear. The right ear has a retraction pocket in it but > doesn't have a C-toma as of yet. The doc is going to insert a tube > which he said may or may not help. They gave me post-op > instructions, one being that I can't wash my hair for 10 days, I > won't be able to stand that. I wash my hair daily, but I could > probably stand it for 2 or 3 days. What did everyone else do? I > have a shower only, but I do have a long shower hose that hooks on to > the original shower, thought I migtht be able to get by with that. > What is the best way to keep your ears from getting wet? Do they > mean to keep water from getting inside the ear only, what about after > sugery and the incision behind the ear, would water cause any > problems with the incision?> > How does everyone deal with the hearing loss. > > >

[Guest guest]

Hi ,

Sorry to hear the results of your CT scan, but at least you have a definite diagnosis on what you are dealing with and you have a "course of action". I know it is scary, it sure was for us when we found out what was going on in my daughter's head, but you will do OK. Learn as much as you can, ask lots of questions, there are a lot of people on this site that can REALLY be helpful. As a word of encouragement ... my daughter had her surgery on September 3 and she is doing really well. Everybody is different with different recovery experiences, different procedures, etc. It does seem though, that there are a lot of things that most seem to have in common. Everybody assured me that this was not as scary as it seemed and that it would be OK. They were right. My daughter had a mastoidectomy and tympanoplasty CWU. She was completely up and around and back to her "hornery" old self in a week. She really only had three or four days that were really difficult.

As far as washing your hair after surgery ... we were told to wait two days before washing her hair. After that we were to have lay her head on the sink and have somebody else wash her hair holding a large plastic cup over her ear to keep any water from getting in the ear or on the incision site. We did this for the first week until the packing came out and then was permitted to wash her hair in the shower with ear plugs or the cotton ball with vaseline.

had significant hearing loss before the surgery, her hearing is no different now than it was before surgery. I don't know the actual stats, but that seems to be a fairly common outcome. In some cases hearing is improved, in some cases it is worse. I'm sure others who have actually experienced this themselves will weigh in on this for you. I don't know how that adjustment is made, but I know my daughter has made it, and she makes it look pretty effortless. I wish like crazy it was one she didn't have to make, but I am very glad that she has been able to handle it, and I am very thankful that we found out what was going on and took care of it before it caused her much more serious problems.

I wish you all the best and will be thinking of you on October 22 (It is the day after my brother's and one of my dearest friend's birthdays ... so an easy date to remember! Seems to be a pattern there!) You will be in our thoughts and prayers.

God Bless,

Dianne

[Guest guest]

Hi ,

Like I said, I can't really help with the hearing loss part except to say that everyone probably deals with it differently. Something that hasn't been mentioned on the site for a while is that the c-toma itself can act as your hearing bone, therefore when it is removed, your hearing will be much worse. This was the case for my husband when first diagnosed. As for me, I had to get used to it as well. I have to be on his right side when I talk to him, unless he is wearing his hearing aide. It is good to know that your insurance will pick up one hearing aide, but at the same time it frustrates me because I feel like they are telling you only one ear is necessary to hear out of. I'm going to go for now. I'm fighting with insomnia right now and don't want to ramble.

Michele

lag4302 wrote:

How does everyone deal with the hearing loss.

[Guest guest]

Thanks Dianne, I am glad your daughter did well. I hope she is still

doing fine. I will try what you suggested with the hair washing.

Seems like everyone is having a birthday around the 22 of October.

My sons is the 16th. I have learned alot about this disease. I have

done extensive research on the disease itself. But I haven't

experienced the surgery the cleanings and everything else that goes

along with it like everyone else has. It is nice to know that I can

come to this site and get an idea of the problems everyone has faced

or will face.

>

>

> Hi ,

>

> Sorry to hear the results of your CT scan, but at least you have a

definite diagnosis on what you are dealing with and you have

a " course of action " . I know it is scary, it sure was for us when we

found out what was going on in my daughter's head, but you will do

OK. Learn as much as you can, ask lots of questions, there are a lot

of people on this site that can REALLY be helpful. As a word of

encouragement ... my daughter had her surgery on September 3 and she

is doing really well. Everybody is different with different recovery

experiences, different procedures, etc. It does seem though, that

there are a lot of things that most seem to have in common.

Everybody assured me that this was not as scary as it seemed and that

it would be OK. They were right. My daughter had a mastoidectomy

and tympanoplasty CWU. She was completely up and around and back to

her " hornery " old self in a week. She really only had three or four

days that were really difficult.

>

>

> As far as washing your hair after surgery ... we were told to wait

two days before washing her hair. After that we were to have

lay her head on the sink and have somebody else wash her hair holding

a large plastic cup over her ear to keep any water from getting in

the ear or on the incision site. We did this for the first week

until the packing came out and then was permitted to wash her

hair in the shower with ear plugs or the cotton ball with vaseline.

>

> had significant hearing loss before the surgery, her hearing

is no different now than it was before surgery. I don't know the

actual stats, but that seems to be a fairly common outcome. In some

cases hearing is improved, in some cases it is worse. I'm sure

others who have actually experienced this themselves will weigh in on

this for you. I don't know how that adjustment is made, but I know

my daughter has made it, and she makes it look pretty effortless. I

wish like crazy it was one she didn't have to make, but I am very

glad that she has been able to handle it, and I am very thankful that

we found out what was going on and took care of it before it caused

her much more serious problems.

>

> I wish you all the best and will be thinking of you on October 22

(It is the day after my brother's and one of my dearest friend's

birthdays ... so an easy date to remember! Seems to be a pattern

there!) You will be in our thoughts and prayers.

>

> God Bless,

>

> Dianne

>

>

>

[Guest guest]

Michele,

I know what you mean about the insomnia, I have it all the time,

sometimes worse than others. I guess I am lucky that the insurance

will pay for at least one hearing aid, most insurances won't pay for

any. I did read on a website that they (whoever I dont know) was

trying to change it to where insurances will pay for hearing aids.

It is a bummer though, so many people need glasses and hearing aids

and the such and insurances won't pay. Sometimes I wonder what

insurance is even good for. But what can you do.

How does everyone deal with the hearing loss.

>

>

>

[Guest guest]

<PRE>it is very hard to go without washing your hair. what i use is no-rinse

shampoo. you can buy it at the pharmacy for about $10.00 it is kinda high

priced but it does work. you have to use it everyday and have someone help

you so you dont get the ear wet but it is worth it.

[Guest guest]

Hello

I'm sure you're already coping with the hearing loss by visual alertness, by skillful positioning and by just using plain intuition. Hearing is always going to be bit of hard work and there are always going to be a few environmental situations where become completely unstuck. I have 100/50 decibel loss in the bad and good ear respectively (profound/moderate deafness) but I lost the hearing slowly over decades and not because of c-toma. So I've adapted, it must be much harder to lose one's hearing more suddenly without having learned a way to compensate for it.

Post surgery, I had the kind of packing that fills the ear canal to the outer ear. Don't know how common that is but it meant I couldn't plug the ear with cotton wool and vaseline. Solution - a generous sized patch made from a plastic bag, cover the ear and keep it in place with elastic bands. It worked for me! (maybe I should patent it!)

Not everyone gets along with hearing aids. Despite the wonderous technology claims, they are basically noise amplifiers which may mean more intrusive cacophony than audible clarity. It also depends upon the difference between the "air/bone gap". The "air" indicating the level of conductive hearing loss (through destruction of the ossicles or blockage) and the "bone" indicating the the sensorineural hearing loss or the potential sound that passes through the skull (damage to cochlea). In long- term ear disease there is likely to be some level of sensorineural loss but most of us will have enough potential hearing to make hearing aids worthwhile. You wouldn't be able to use an in-the-ear aid after a CWD and a behind-the-aid ought to have a ventilation hole in the mould to make sure the ear is kept well aired.

Anxious days as the surgery approaches, we all know - our thoughts are with you.

Phil

I got the CT Scan results today, looks like the disease is pretty extensive. He has me going in for a tempanoplasty mastoidectomy, but he believes he might have to do a radical mastoidectomy and meatoplasty. My surgery date is October 22, sure not looking forward to it. I have had this disease for a long time and I do suffer symptoms from it, I have had ear draingage, dizziness, headaches and pressure in the ear. The right ear has a retraction pocket in it but doesn't have a C-toma as of yet. The doc is going to insert a tube which he said may or may not help. They gave me post-op instructions, one being that I can't wash my hair for 10 days, I won't be able to stand that. I wash my hair daily, but I could probably stand it for 2 or 3 days. What did everyone else do? I have a shower only, but I do have a long shower hose that hooks on to the original shower, thought I migtht be able to get by with that. What is the best way to keep your ears from getting wet? Do they mean to keep water from getting inside the ear only, what about after sugery and the incision behind the ear, would water cause any problems with the incision?

[Guest guest]

Hi !

How are you?

I think I liked the fact that I didn't know what to

expect with the first surgery because I went in sort

of naive but now that I know more and read the

description of the actual surgery, it's freaked me out

more! It just seems surreal sometimes. No, I had no

complications from the anesthesia. Unfortunately, I

read up about it and some of the info scared me. Too

much info sometimes! I'm being unreasonable, I know. I

just have to gather the courage to set a time for the

operation. It is very brave of you that you are all

set to go on October 22. From what I've read from the

other emails, it's a great day for you to have

surgery! We will all be thinking good thoughts for

you. Where are you having the surgery so I know which

direction to send them? : )

__________________________________________________

[Guest guest]

Tammy

I suppose there will always be one or two people for whom c-toma is just the start of rough ride. I hope you can find an end the cycle of c-tomas and surgeries. My situation is the really the result of a wide-spread secondary development of 'canal c-toma' - I should emphasize that the canal c-toma is itself an unusual form of the disease and that the secondary part is completely anomolous. The prospective surgery would require removal of the entire ear canal and much of the temporal bone. I already have a lot of head/ear problems but this is heavy duty surgery which they won't rush into it - my next assessment is in 2 weeks time.

I am familiar with audiology charts by now ( 6 hearing tests in the past year alone). Of course, hearing ability is far more complex than anything that the decibel levels show. If you've seen an audiogram you may have seen a number of graph lines superimposed. One joined by X's for the left ear, one by O's for the right and possibly 2 others joined by ['s for the bone conduction for each ear. Top to bottom of the scale is decibel level (sound intensity); the lower down the scale and the deafer you are. The left to right is the frequency (low to high tones) - people usually start to lose the higher frequencies first. Here are a couple of websites that may make explain things better.

http://www.jsu.edu/depart/dss/VRProject/audiograms.html

http://www.earinfo.com/howread1.html

Phil

PS Kim - If you read this, welcome back up into the ether.

phillwhat kind of surgery are you needing? my new one is in the sinus cavity now i was just told this back in aug but my doc has never done this type of surgery as of yet. He was going to call the doc in ny at john hopkins and see if they have ever done this before. i have not had any reconstruction surgery done in about 6 years they have all been for returning c-tomas i just had one on aug 28 but the doctor thinks it has returned already. one more question do you know how to read a hearing test?thanks tammy

[Guest guest]

thank you for the info on hearing tests maybe that will help me in trying to

understand this a little better. i know my hearing is profound the marks sit

between 100 and 110 on the graph. i am still not able to wear my hearing aid

in my right ear. i go to the doctor today becouse my ear is bleeding bright

red blood and is draining alot. i really hope this does not mean that i have

a returned c-toma in that ear it has only been 5 weeks since surgery. but i

am sure it will work out. well i hope everything goes ok with you let me know

what the doctor says.

tammy

[Guest guest]

Hi Tammy,

Sorry to hear things are not so good for you. Please let us know what happens at your appointment today.

Michele

jsatssat@... wrote:

thank you for the info on hearing tests maybe that will help me in trying to understand this a little better. i know my hearing is profound the marks sit between 100 and 110 on the graph. i am still not able to wear my hearing aid in my right ear. i go to the doctor today becouse my ear is bleeding bright red blood and is draining alot. i really hope this does not mean that i have a returned c-toma in that ear it has only been 5 weeks since surgery. but i am sure it will work out. well i hope everything goes ok with you let me know what the doctor says.tammy

[Guest guest]

freaked out mom - Hello

Well no - it wouldn't be normal to spend 4 days in hospital and have bandages for 2 months not even with a radical Canal Wall Down mastoidectomy. It's usually said that c-toma is more prevalant and more aggressive in children but that the worst cases are almost always found in adults simply because the severity of the disease is dependent upon the length of time it's been there. Were there particular complications in your son's case or some underlying condition that made the healing of the surgery wound so difficult? Why weren't they able to remove the c-toma first time round? Do you suspect that the surgeon may have just made a mess of the things? If that were so, couldn't you seek the advice from a second doctor? - I think you have to have absolute confidence in any doctor who performs this kind delicate microsurgery because success or failure of any treatment can have implications for the rest life - probably more so for children. I'm sorry to hear about your son's troubles - I hope it works out.

Phil

Hello-I must say I have been reading these emails from thissupport group and what a releif!!!I have a 9 year old son who has C-toma in his rightear. 80% hearing loss in that ear as well. He had his1st surgery when he was 7 in was more of a look andsee surgery, then last Feb. he had a partcialmastoidectomy. Still there is C-toma in his ear so hewill be going for a full mas in Dec. I listen to all the side effects and become physicallyill thinking of what might happen durring surgery andwhat might happen if we dont have surgery. With hispartical mass My son's ear took a good two monthsbefore no bandages of any sort were worn, and at onepoint the stiches behind is ear split open. He alsohad to stay in the hospital for 4 days after thesurgery..is that normal? I was told it was an outpatient surgery.All that from a particial mas...how's it going to bewith a full mas???If anyone out there can tell me if they have had thisfull mas before, and if there were any major sideeffects and how long was the hospital stay and what Ican do to make it easier on him after words..thatwould be greatly appreciated!Signed,

[Guest guest]

I also am wondering why they didn't remove the c-toma in your son the

first time they went in. Did they find any c-toma then?

My son was in surgery for over 6 hours and he went home a couple

hours after the surgery, Sept 18th. The doctor put in the protheses

at that time too (not sure whether that was a good idea). My son was

really sick to his stomach so I wish he could have stayed at the

hospital longer, but it was also good to have him in his familiar

environment.

Kathy

> freaked out mom - Hello

>

> Well no - it wouldn't be normal to spend 4 days in hospital and

have bandages for 2 months not even with a radical Canal Wall Down

mastoidectomy. It's usually said that c-toma is more prevalant and

more aggressive in children but that the worst cases are almost

always found in adults simply because the severity of the disease is

dependent upon the length of time it's been there. Were there

particular complications in your son's case or some underlying

condition that made the healing of the surgery wound so difficult?

Why weren't they able to remove the c-toma first time round? Do you

suspect that the surgeon may have just made a mess of the things? If

that were so, couldn't you seek the advice from a second doctor? - I

think you have to have absolute confidence in any doctor who performs

this kind delicate microsurgery because success or failure of any

treatment can have implications for the rest life - probably more so

for children. I'm sorry to hear about your son's troubles - I hope it

works out.

>

> Phil

>

>

> Hello-

> I must say I have been reading these emails from this

> support group and what a releif!!!

> I have a 9 year old son who has C-toma in his right

> ear. 80% hearing loss in that ear as well. He had his

> 1st surgery when he was 7 in was more of a look and

> see surgery, then last Feb. he had a partcial

> mastoidectomy. Still there is C-toma in his ear so he

> will be going for a full mas in Dec.

> I listen to all the side effects and become physically

> ill thinking of what might happen durring surgery and

> what might happen if we dont have surgery. With his

> partical mass My son's ear took a good two months

> before no bandages of any sort were worn, and at one

> point the stiches behind is ear split open. He also

> had to stay in the hospital for 4 days after the

> surgery..is that normal? I was told it was an out

> patient surgery.

> All that from a particial mas...how's it going to be

> with a full mas???

> If anyone out there can tell me if they have had this

> full mas before, and if there were any major side

> effects and how long was the hospital stay and what I

> can do to make it easier on him after words..that

> would be greatly appreciated!

> Signed,

>

>

>

>

>

>

>

>

>

>

[Guest guest]

> Hi !

> ,

I know what you mean about all the information. I wasn't as scared

until I researched the heck out of it. I think I worry more so about

becoming totally deaf. I have 70 percent hearing loss in my C-toman

ear, and 50 percent loss in my right ear. The doctor talked like my

hearing will be worse indefinetly in that ear. Well I am thinking,

if I have that much loss then after surgery I will be pretty much

deaf in that ear. I will be glad to get the surgery over with but

not looking forward to more hearing loss. As far as you setting a

date for your surgery, you could say to yourself what NIKE says: Just

do it. I have used that on occasion and it seems to help. Good

Luck, don't put it off too long.

> How are you?

>

> I think I liked the fact that I didn't know what to

> expect with the first surgery because I went in sort

> of naive but now that I know more and read the

> description of the actual surgery, it's freaked me out

> more! It just seems surreal sometimes. No, I had no

> complications from the anesthesia. Unfortunately, I

> read up about it and some of the info scared me. Too

> much info sometimes! I'm being unreasonable, I know. I

> just have to gather the courage to set a time for the

> operation. It is very brave of you that you are all

> set to go on October 22. From what I've read from the

> other emails, it's a great day for you to have

> surgery! We will all be thinking good thoughts for

> you. Where are you having the surgery so I know which

> direction to send them? : )

>

>

>

>

> __________________________________________________

>

[Guest guest]

Hi Phil,

I have often wondered by reading your posts if you were a nurse,

doctor, or do you own the tobacco company Ha ha. (that was meant to

be humorous, not sarcastic).

> Hello

>

> I'm sure you're already coping with the hearing loss by visual

alertness, by skillful positioning and by just using plain intuition.

Hearing is always going to be bit of hard work and there are always

going to be a few environmental situations where become completely

unstuck. I have 100/50 decibel loss in the bad and good ear

respectively (profound/moderate deafness) but I lost the hearing

slowly over decades and not because of c-toma. So I've adapted, it

must be much harder to lose one's hearing more suddenly without

having learned a way to compensate for it.

>

> Post surgery, I had the kind of packing that fills the ear canal to

the outer ear. Don't know how common that is but it meant I couldn't

plug the ear with cotton wool and vaseline. Solution - a generous

sized patch made from a plastic bag, cover the ear and keep it in

place with elastic bands. It worked for me! (maybe I should patent

it!)

>

> Not everyone gets along with hearing aids. Despite the wonderous

technology claims, they are basically noise amplifiers which may mean

more intrusive cacophony than audible clarity. It also depends upon

the difference between the " air/bone gap " . The " air " indicating the

level of conductive hearing loss (through destruction of the ossicles

or blockage) and the " bone " indicating the the sensorineural hearing

loss or the potential sound that passes through the skull (damage to

cochlea). In long- term ear disease there is likely to be some level

of sensorineural loss but most of us will have enough potential

hearing to make hearing aids worthwhile. You wouldn't be able to use

an in-the-ear aid after a CWD and a behind-the-aid ought to have a

ventilation hole in the mould to make sure the ear is kept well aired.

>

> Anxious days as the surgery approaches, we all know - our thoughts

are with you.

>

> Phil

>

>

> I got the CT Scan results today, looks like the disease is pretty

> extensive. He has me going in for a tempanoplasty mastoidectomy,

but

> he believes he might have to do a radical mastoidectomy and

> meatoplasty. My surgery date is October 22, sure not looking

forward

> to it. I have had this disease for a long time and I do suffer

> symptoms from it, I have had ear draingage, dizziness, headaches

and

> pressure in the ear. The right ear has a retraction pocket in it

but

> doesn't have a C-toma as of yet. The doc is going to insert a

tube

> which he said may or may not help. They gave me post-op

> instructions, one being that I can't wash my hair for 10 days, I

> won't be able to stand that. I wash my hair daily, but I could

> probably stand it for 2 or 3 days. What did everyone else do? I

> have a shower only, but I do have a long shower hose that hooks

on to

> the original shower, thought I migtht be able to get by with

that.

> What is the best way to keep your ears from getting wet? Do they

> mean to keep water from getting inside the ear only, what about

after

> sugery and the incision behind the ear, would water cause any

> problems with the incision?

[Guest guest]

Thanks Kam,

You gave me good information and suggestions.

> > Thanks , Phil, and Jane,

> >

> > I got the CT Scan results today, looks like the disease is pretty

> > extensive. He has me going in for a tempanoplasty mastoidectomy,

> but

> > he believes he might have to do a radical mastoidectomy and

> > meatoplasty. My surgery date is October 22, sure not looking

> forward

> > to it. I have had this disease for a long time and I do suffer

> > symptoms from it, I have had ear draingage, dizziness, headaches

> and

> > pressure in the ear. The right ear has a retraction pocket in it

> but

> > doesn't have a C-toma as of yet. The doc is going to insert a

tube

> > which he said may or may not help. They gave me post-op

> > instructions, one being that I can't wash my hair for 10 days, I

> > won't be able to stand that. I wash my hair daily, but I could

> > probably stand it for 2 or 3 days. What did everyone else do? I

> > have a shower only, but I do have a long shower hose that hooks

on

> to

> > the original shower, thought I migtht be able to get by with

that.

> > What is the best way to keep your ears from getting wet? Do they

> > mean to keep water from getting inside the ear only, what about

> after

> > sugery and the incision behind the ear, would water cause any

> > problems with the incision?

> >

> > How does everyone deal with the hearing loss.

[Guest guest]

--

Glad to hear that everything is falling in place for your surgery.

March 6 will be here before you know it.

Candy

[Guest guest]

i have follow up on march 7. good luck

[Guest guest]

hi teresa wow!!! congrats on the surgery date i'll keep your

daughter in my prayers best of luck

susan

N24 7/02

[Guest guest]

Wow, . It's great to hear from you and with

this great news as well. I am sure you are full of

mixed feelings right now and want you to know that we

are all here rooting for . I'm glad you've been

reading and feel that you've learned from the group.

This is a very special group and I'm thrilled to see

that the support is there for everyone.

How does feel about her upcoming CI surgery?

She will certainly be in my thoughts and we will be

looking forward to your report.

<smile>

Alice

--- teetee3311 <JDNFishing@...> wrote:

> Hi all, some of you may remember me. I haven't

> posted anything in quite sometime but I have been

reading all of your emails and learning a lot.(thanks)

Just wanted to let everyone know that my daughter

(11 yrs old) will be implanted onTuesday, June

3rd with a N24. Please keep her in your thoughts.

Thank you and I will update everyone after surgery

[Guest guest]

I certainly remember you ! Best wishes to on what is sure to be

a speedy recovery from her CI surgery. Looking forward to hearing from you!

N24C

2000