RE: Question to Parents

[Guest guest]

Candy:

I had my first surgery at 7 for my C-toma, fortunately my ONLY real C-toma surgery. The second surgery I had was at 17 to widen my ear canal and put in a bone conductor for a hearing aid. I have my degree in Speech and Hearing just for the purpose of wanting to help children deal with hearing loss. I tell everyone I "can't hear" out of my left ear and that my right one is my good one. They adapt -- I adapt. I have probably a 70 dB hearing loss in my left ear (i.e., someone has to pretty much yell in my left ear so I can hear). There is some hearing there; I work as a medical transcriptionist right now and if I don't wear my earphone on that side I can't hear as well.

It's very difficult as a young person to have this, it's not fair. My best friends were my "ears." In basketball, my coach would tell my friends something to tell me because he knew I couldn't hear him yelling at me from the bench; I would always situate myself in the front row on the left side (so I could hear with my right ear better), I would always walk on people's left sides so we could talk. I do everything jokingly and it makes other people comfortable as well as myself when I tell them I have a hearing loss. I'm so used to it now that if, all of a sudden, I could hear out of my left ear, well it would just be weird! Now, my kids are adapting, although they still don't get it that mommy needs peace and quiet sometimes or I get frustrated. I have to say, that is one thing as I get older that I think contributes to some anxiety, agitation and even depression at times. The fact that I can't hear is very frustrating, but my way to deal with it is to tell people. When I'm at home and watching TV, I always mute the TV on commercials because that's when everyone talks in my house. I can't hold on a conversation while the TV is on, it just adds to the frustration.

This is turning into a novel, but I really hope this helps you help your daughter. I really didn't have anyone helping me, but I had a ton of understanding people around me to help me deal with this myself.

Good luck,

I.

[Guest guest]

Good morning Candy - does your daughter wear a hearing aid? My daughter Chelsy, now age 11, had the surgery at age 4 - it was massive, totally eroded all the hearing bones and half the inner ear drum. To date she has had no reoccurrences of c-toma nor has she had the reconstructive surgery. She was very traumatized by surgery for tubal insertion, 2 CAT scans and the c-toma surgery - so her surgeon put it off. She is now in the midst of puberty, raging hormones and emotions, so she will have the surger at age 13 or 14. She has a severe hearing loss in her right ear and has worn a hearing aid since age 5. Every year has been a different reaction and adjustment. I don't she'll really accept her impairment; she has a hearing teacher/counsel who is helping her deal with all of this "stuff" and is coming along. She also corresponds with other kids through this website, who have had similar experience, etc. Maybe that will help your daughter as well. Chels corresponds with ie (Francesca), Beth, Dan and Sam. She would be more than happy to chat/write letters with your daughter as well.

Caryn L. Gleixner Tabet DiVito & Rothstein LLC 180 N. LaSalle Street, Suite 1510 Chicago, IL 60601 (312) 762-9473 (voice) (312) 795-9801 (fax) www.tdrlawfirm.com

This e-mail/internet message may contain material and/or information that is privileged, confidential and/or attorney work product and which is exempt from disclosure. It is for the sole use of the intended recipient. Any review, reliance or distribution by others or forwarding without express permission is strictly prohibited. If you are not the intended recipient, please contact the sender immediately and delete all copies, and do not forward or use this information in any way. Thank you.

-----Original Message-----From: nicknkate20705 [mailto:candy.fosta@...]Sent: Monday, April 28, 2003 8:45 AMcholesteatoma Subject: Question to ParentsHi all. Most of you know that (almost 9 year old daughter) Katelyn has had 2 ctoma surgeries. We have been fortunate that at this point she only has a "mild" conductive hearing loss. She developed a post-op infection after the 2nd surgery and a hole developed in the new eardrum. Surgeon has been watching it/her. Saw the surgeon on 4/11 and everything looks good. Discussed the possibility of doing surgery in August to "patch/repair" the hole if it doesn't heal by then. Also discussed that in Kate's case, growth is aggressive when/if it returns (7 months between the 1st and 2nd surgery the ctoma returned and eroded her hammer bone) so if anything indicated ctoma had returned, surgery would need to be done immediately and not scheduled.So here's my question -- she is now old enough to understand what is going on. We have always been honest with her and so has the surgeon. Since the 2nd surgery, she has been very preoccupied with being "handicapped" and losing her hearing. She does not want to have any more surgeries (I can sympathize with her). She has also been talking about wanting to see another doctor. I told her we could do that but that wouldn't mean that she wouldn't have any more surgeries. We are very happy with the current surgeon. He has ctoma experience and is very straightforward with us.Any suggestions on how to relieve her anxieties over this condition? Obviously, we are going to be dealing with this for a long time, and I just want to make it as easy on her as possible.Thanks much!Candy

[Guest guest]

Candy,

I was about 8 when I was diagnosed with c-toma on one side, and from age

9 to 17, I had one surgery a year (this is NOT something I would share

with Katelyn!). I'm 33 now, and wear a hearing aid, without which I'm

effectively deaf on that side. However, I only found it necessary to

get a hearing aid once I became a parent, as I found it hard to

understand my kids when they began talking.

From this perspective, I can say that my hearing loss has not

significantly impacted my life. Most people don't know I have a hearing

problem at all - you compensate, and it becomes a part of you that you

stop noticing.

Try to give Katelyn some of that perspective, and acknowledge to her

that it's very hard to see that far down the road, but that you know

people get on with it without much trouble in the long run. Also, get

her to focus on something other than her ears - while it's important and

stressful, her surgery is only a very, very small part of life overall

(something for you to keep in mind as well). When I think back to my

childhood, I don't feel it's tainted my recollections at all - I

remember the kinds of things we all remember, not that I was in the

hospital a lot, or that I was " handicapped " (a bit overdramatic there, I

think), or that people shunned me, etc. etc.

On the subject of changing doctors or stopping further surgery - I had 7

operations to repair my hearing, none of which worked as well as

advertised. I'm certain I complained all along the way, resisted,

demanded a different doctor, etc. etc. etc. It did not crush my ego to

not get my way. However, when I was 17, and the last surgery didn't

work, my parents DID give me a choice of whether to continue or stop,

and I chose to stop. Was it the right choice? I don't know - but it

empowered me, because it was MY choice. At the right time, giving

Katelyn that choice will help her feel more in control (and I hope

fervently that the " right time " never comes, because I hope for your

sake and hers that she's done!). Right now, it's more important that

you be comfortable that you're doing the right thing (you are) with the

right surgeon.

As a parent, I don't know how I'll react if my daughter still

needs surgery(ies) after this one, tentatively scheduled for July (and

the first c-toma surgery for her). She has taken her 2 tube-insertion

surgeries well, and we continue to keep her fully informed (as much as a

4-year-old can be) of what's going on, and that the doctor is working to

" fix her ears. " The last time she had tubes in (about a month ago) she

was actually excited about going for the surgery, because her ears were

getting fixed. I know that won't last, but I think it's an indicator

that we're doing the right thing by focusing on the positive.

Best of luck. If Katelyn would like to talk with someone who's been

there, feel free to pass her my email address.

-Jeff.

Question to Parents

Hi all. Most of you know that (almost 9 year old daughter) Katelyn

has had 2 ctoma surgeries. We have been fortunate that at this

point she only has a " mild " conductive hearing loss. She developed

a post-op infection after the 2nd surgery and a hole developed in

the new eardrum. Surgeon has been watching it/her. Saw the surgeon

on 4/11 and everything looks good. Discussed the possibility of

doing surgery in August to " patch/repair " the hole if it doesn't

heal by then. Also discussed that in Kate's case, growth is

aggressive when/if it returns (7 months between the 1st and 2nd

surgery the ctoma returned and eroded her hammer bone) so if

anything indicated ctoma had returned, surgery would need to be done

immediately and not scheduled.

So here's my question -- she is now old enough to understand what is

going on. We have always been honest with her and so has the

surgeon. Since the 2nd surgery, she has been very preoccupied with

being " handicapped " and losing her hearing. She does not want to

have any more surgeries (I can sympathize with her). She has also

been talking about wanting to see another doctor. I told her we

could do that but that wouldn't mean that she wouldn't have any more

surgeries. We are very happy with the current surgeon. He has

ctoma experience and is very straightforward with us.

Any suggestions on how to relieve her anxieties over this

condition? Obviously, we are going to be dealing with this for a

long time, and I just want to make it as easy on her as possible.

Thanks much!

Candy

[Guest guest]

Caren & Jeff --

Thanks for your responses. I feel like we are doing the right thing

with her but sometimes you need to hear from other parents.

Caren -- she does not use any type of hearing aid now. She has only

a mild conductive hearing loss (which probably should be worse but

the surgeon repositioned her eardrum during the last surgery where

she lost her hammer bone so that the new drum would vibrate off the

other 2 bones -- apparently it worked). She does not require any

special needs at home or school. I think that she has just started

focusing on the situation and has started to question what is going

on. She is not treated differently by her family or her friends so

I'm not quite sure where the " handicapped " discussion came from.

She knows that she has to take special precautions when bathing and

swimming and seems to accept that with no problem. I appreciate the

offer for her to correspond with your daughter and I will pass that

along to her.

Jeff --

Thanks for your history. I know that you have been through quite a

lot and are concerned for your daughter too. In fact, when Katelyn

started talking about a 2nd opinion, I thought of you and the doctor

your daughter is currently seeing in Virginia. While we have been

honest with her about her condition, we have also made it a point to

be clear that the worst case scenario would be hearing loss but that

she could still lead a " normal " (her terms) life with some

adjustments. I hope that it is true with her that when she looks

back she remembers all the fun stuff from her childhood. She is

very active in sports and is a very social kid. I'll tell her about

your offer to have her email you. Thanks for the support.

Candy

[Guest guest]

Hi - I'm going to pass your post onto my daughter Chelsy, age 11. She is having difficulty right now with the "why me" issue of being hearing impaired and having to wear a hearing aid. Like you she has a severe loss - in her right ear. She has played basketball has well - minus the hearing aid for sports activities. The basketball went so so - she had terrible coaches - the screaming and yelling variety which of course worsened her ability to hear on the court - she also had some of the other girls help her out with direction, etc.

I made sure she has a hearing teacher/counsel through her school district. They have been "chatting" monthly and the chats are helping - slowly. They discuss many of the issues you brought up. Her c-toma was massive and totally eradicated all the hearing bones and half of the inner ear drum - reconstructive surgery is tentatively scheduled when she's 13-14 - raging hormones going on right now - right ? -

Thanks.

Caryn L. Gleixner Tabet DiVito & Rothstein LLC 180 N. LaSalle Street, Suite 1510 Chicago, IL 60601 (312) 762-9473 (voice) (312) 795-9801 (fax) www.tdrlawfirm.com

This e-mail/internet message may contain material and/or information that is privileged, confidential and/or attorney work product and which is exempt from disclosure. It is for the sole use of the intended recipient. Any review, reliance or distribution by others or forwarding without express permission is strictly prohibited. If you are not the intended recipient, please contact the sender immediately and delete all copies, and do not forward or use this information in any way. Thank you.

-----Original Message-----From: LIsley2@... [mailto:LIsley2@...]Sent: Monday, April 28, 2003 10:29 AMcholesteatoma Subject: Re: Question to ParentsCandy:I had my first surgery at 7 for my C-toma, fortunately my ONLY real C-toma surgery. The second surgery I had was at 17 to widen my ear canal and put in a bone conductor for a hearing aid. I have my degree in Speech and Hearing just for the purpose of wanting to help children deal with hearing loss. I tell everyone I "can't hear" out of my left ear and that my right one is my good one. They adapt -- I adapt. I have probably a 70 dB hearing loss in my left ear (i.e., someone has to pretty much yell in my left ear so I can hear). There is some hearing there; I work as a medical transcriptionist right now and if I don't wear my earphone on that side I can't hear as well. It's very difficult as a young person to have this, it's not fair. My best friends were my "ears." In basketball, my coach would tell my friends something to tell me because he knew I couldn't hear him yelling at me from the bench; I would always situate myself in the front row on the left side (so I could hear with my right ear better), I would always walk on people's left sides so we could talk. I do everything jokingly and it makes other people comfortable as well as myself when I tell them I have a hearing loss. I'm so used to it now that if, all of a sudden, I could hear out of my left ear, well it would just be weird! Now, my kids are adapting, although they still don't get it that mommy needs peace and quiet sometimes or I get frustrated. I have to say, that is one thing as I get older that I think contributes to some anxiety, agitation and even depression at times. The fact that I can't hear is very frustrating, but my way to deal with it is to tell people. When I'm at home and watching TV, I always mute the TV on commercials because that's when everyone talks in my house. I can't hold on a conversation while the TV is on, it just adds to the frustration. This is turning into a novel, but I really hope this helps you help your daughter. I really didn't have anyone helping me, but I had a ton of understanding people around me to help me deal with this myself.Good luck, I.

[Guest guest]

i have a soon to be 18 yr. old who has failed all

hearing tests since 6 yrs old.the doctor kept putting

in tubes and lots of antibiotics.12 sets of tubes

later and going into college next year,i told him we

need to do something different.cat scans showed

nothing,so he went in to drain.there was nothing to

drain,so he went deeper and found a c-toma,and her

eardrum wasnt touching to get the vibrations.this was

done on 4/15.he said this may or may not work with the

hearing.i am proud to say on 4/25,she got hearing in

that ear.FAMILY HUGGGGGGG.good luck........karen

--- Jeff <jlcarter@...> wrote:

> Candy,

>

> I was about 8 when I was diagnosed with c-toma on

> one side, and from age

> 9 to 17, I had one surgery a year (this is NOT

> something I would share

> with Katelyn!). I'm 33 now, and wear a hearing aid,

> without which I'm

> effectively deaf on that side. However, I only

> found it necessary to

> get a hearing aid once I became a parent, as I found

> it hard to

> understand my kids when they began talking.

>

> From this perspective, I can say that my hearing

> loss has not

> significantly impacted my life. Most people don't

> know I have a hearing

> problem at all - you compensate, and it becomes a

> part of you that you

> stop noticing.

>

> Try to give Katelyn some of that perspective, and

> acknowledge to her

> that it's very hard to see that far down the road,

> but that you know

> people get on with it without much trouble in the

> long run. Also, get

> her to focus on something other than her ears -

> while it's important and

> stressful, her surgery is only a very, very small

> part of life overall

> (something for you to keep in mind as well). When I

> think back to my

> childhood, I don't feel it's tainted my

> recollections at all - I

> remember the kinds of things we all remember, not

> that I was in the

> hospital a lot, or that I was " handicapped " (a bit

> overdramatic there, I

> think), or that people shunned me, etc. etc.

>

> On the subject of changing doctors or stopping

> further surgery - I had 7

> operations to repair my hearing, none of which

> worked as well as

> advertised. I'm certain I complained all along the

> way, resisted,

> demanded a different doctor, etc. etc. etc. It did

> not crush my ego to

> not get my way. However, when I was 17, and the

> last surgery didn't

> work, my parents DID give me a choice of whether to

> continue or stop,

> and I chose to stop. Was it the right choice? I

> don't know - but it

> empowered me, because it was MY choice. At the

> right time, giving

> Katelyn that choice will help her feel more in

> control (and I hope

> fervently that the " right time " never comes, because

> I hope for your

> sake and hers that she's done!). Right now, it's

> more important that

> you be comfortable that you're doing the right thing

> (you are) with the

> right surgeon.

>

> As a parent, I don't know how I'll react if my

> daughter still

> needs surgery(ies) after this one, tentatively

> scheduled for July (and

> the first c-toma surgery for her). She has taken

> her 2 tube-insertion

> surgeries well, and we continue to keep her fully

> informed (as much as a

> 4-year-old can be) of what's going on, and that the

> doctor is working to

> " fix her ears. " The last time she had tubes in

> (about a month ago) she

> was actually excited about going for the surgery,

> because her ears were

> getting fixed. I know that won't last, but I think

> it's an indicator

> that we're doing the right thing by focusing on the

> positive.

>

> Best of luck. If Katelyn would like to talk with

> someone who's been

> there, feel free to pass her my email address.

>

> -Jeff.

>

>

> Question to Parents

>

>

> Hi all. Most of you know that (almost 9 year old

> daughter) Katelyn

> has had 2 ctoma surgeries. We have been fortunate

> that at this

> point she only has a " mild " conductive hearing loss.

> She developed

> a post-op infection after the 2nd surgery and a hole

> developed in

> the new eardrum. Surgeon has been watching it/her.

> Saw the surgeon

> on 4/11 and everything looks good. Discussed the

> possibility of

> doing surgery in August to " patch/repair " the hole

> if it doesn't

> heal by then. Also discussed that in Kate's case,

> growth is

> aggressive when/if it returns (7 months between the

> 1st and 2nd

> surgery the ctoma returned and eroded her hammer

> bone) so if

> anything indicated ctoma had returned, surgery would

> need to be done

> immediately and not scheduled.

>

> So here's my question -- she is now old enough to

> understand what is

> going on. We have always been honest with her and

> so has the

> surgeon. Since the 2nd surgery, she has been very

> preoccupied with

> being " handicapped " and losing her hearing. She

> does not want to

> have any more surgeries (I can sympathize with her).

> She has also

> been talking about wanting to see another doctor. I

> told her we

> could do that but that wouldn't mean that she

> wouldn't have any more

> surgeries. We are very happy with the current

> surgeon. He has

> ctoma experience and is very straightforward with

> us.

>

> Any suggestions on how to relieve her anxieties over

> this

> condition? Obviously, we are going to be dealing

> with this for a

> long time, and I just want to make it as easy on her

> as possible.

>

> Thanks much!

>

> Candy

>

>

>

[Guest guest]

Hi - thanks for your input and experiences. My daughter went for 2 1/2 weeks where she didn't where her aid - she wasn't aware that I knew about it. Her teacher and the school nurse/computer teacher (conveniently also our neighbor) were keeping track of the days she was without - just before all this, she was telling me some of her classmates were giving her a hard time, calling her a weirdo, etc. Then I found out she wasn't wearing the aid and everything clicked together. Her hearing counselor called her at home, told her it was not negotiable - the aid had to be in her ear except where in circumstances where it could be damages, i.e. sports, etc. or sleeping obviously. Well she got her report card last week which reflected that time frame. She went down a grade in science and math - two subjects for her. Her hearing counselor now goes to the school to chat with the kids, she's teaching them sign language and generally just talking.

I don't know if the impairment is the least of her "worries" - she also had to get glasses a years ago, was diagnosed with scoliosis last fall and will soon be getting braces - a lot for an 11-year old to "embrace".

Caryn L. Gleixner Tabet DiVito & Rothstein LLC 180 N. LaSalle Street, Suite 1510 Chicago, IL 60601 (312) 762-9473 (voice) (312) 795-9801 (fax) www.tdrlawfirm.com

This e-mail/internet message may contain material and/or information that is privileged, confidential and/or attorney work product and which is exempt from disclosure. It is for the sole use of the intended recipient. Any review, reliance or distribution by others or forwarding without express permission is strictly prohibited. If you are not the intended recipient, please contact the sender immediately and delete all copies, and do not forward or use this information in any way. Thank you.

-----Original Message-----From: LIsley2@... [mailto:LIsley2@...]Sent: Monday, April 28, 2003 6:17 PMcholesteatoma Subject: Re: Question to ParentsCaryn:I had a radical mastoidectomy (removing bones (which were pretty much gone anyway) and the eardrum and part of the mastoid cells). I was never offered reconstructive surgery. When I got into college, going through the Speech and Hearing program, I learned that there was such a thing and was very disappointed it was never brought to my attention. I also got down on myself at that time (I was about 22) because I kept thinking, "what if I lose hearing in my other ear." Good thing a part of the program was sign language! I was scared, but got over it (mostly because my roommate and long time friend since we were in the 4th grade said, "Why are you feeling sorry for yourself, look at me, I have asthma and could die at any minute!") I know it's sick, but that made me feel better and made me feel that my problem wasn't "terminal."I hope I've helped a little bit. I went through the raging hormones, too, (didn't we all) and, to tell you the truth, hearing was the least of my problems!! I know at this age you're very self-conscious and at that age I didn't have a hearing aid to deal with either. When I was a senior, I had a surgery to widen my ear canal and to implant a bone conductor (basically a magnet behind my ear). I was fitted for my hearing aid and was extremely worried about how it looked, so I always wore my hair down (this was in college). WOW, was I missing a ton. After getting my hearing aid, my GPA went up a whole point!!Good luck,

[Guest guest]

Sorry it's taken me so long to respond to this set of postings....but boy do

I get that hormone/hearing thing!!

Francesca is 10yrs old...which appears to be the start of " teens " in a big

way.

Francesca, briefly, has had 3 major surgeries (many minor related ones). The

first was a " modified radical mastoidetomy " aka canal wall down. She had a

further surgery on the same side for an aggressive recurrent ctoma and

unfortunately developed a ctoma on the other side that was treated via canal

wall up, or tympanomastoidectomy. They did this as she already had the

lowest of what is described as moderate hearing loss...and so the second side

was treated as an " only hearing ear " .

I wrote some time ago....about a year or so now, as I was begnning to

experience some of the problems you mention. ie, who is usually very

cheerful and accepting of her ctoma...suddenly became very " down " about it.

I remember being concerned that she was pretty much displaying signs of a

" depression " . She became concerned about being different, why me, why cant I

go swimming..etc...

She was preoccupied with thoughts of further surgeries, the possiblity of

losing her hearing altogether etc. She had already point blank refused to

wear a hearing aid for a year or more, to do with mickey taking at school.

It wasnt helped by the fact that she was also quite withdrawn about her

feelings.....in that she would say all the right things to an outsider, like

her doctor....giving the impression that I was a slightly neurotic mother

(kids, dont you just love they way they do things like that!).

I scoured the net looking for answers...ideas...anything really. Caryn had

posted a few times....and I remembered her from 's site, we'd kind of

lost touch, but we emailed and came up with the idea for the girls to write

to each other.

I knew it might mean that as parents we'd being doing a lot of the

encouraging...to keep it going, but that if it worked it had some potential

benefits.

what seems to be sorely lacking.....well it certainly was for my daughter,

was someone else to identify with. She knew another adult with ctoma, she

knew kids who were deaf, or had problems with ears, but ctoma is quite

specific, and she just couldnt relate to it on her own level. writing to

Chelsy, and some of the other kids, albeit spasmodic at times, is brilliant.

I know the girls talk about the condition and about issues at school. They

talk about how other people at school relate to them, and although they are

still " different " they now know someone who is the " same " . And although

ie has a degree of privacy in her mails/chats....I do get the feeling

that she derives a strength from having a " special someone " who " really

understands " .

Chelsy is the champion pen friend......always writes back promptly..mails

regularly, she's brilliant!

Some of the other things we did to try and resolve the negative feelings

ie was experiencing was to make a book. The idea was to make a record

of her operation. We took a camera into the hospital, we wrote about her

ctoma, bandaged her dollies etc. We drew some pictures of the ear, of her

with a bandage on......and the idea was to make a book to leave on the

children's ENT ward, so that other kids could have a better understanding of

what was happening. We didnt concentrate on putting too many details in the

book......and it was only a dozen pages or so, but we showed how you " book

in " , how you get into bed and get ready for an operation, pics of a hearing

test, and cleaning. She's enjoyed putting it together...and it's still not

finished, but it gave her a sense of control...and helped her feel that she

was getting something positive out of a pretty horrible experience.

Something that has really helped was the introduction of a " signing club " in

school. Francesca attends a mainstream school. The club was run by a

teaching assistant and lasts about 20 mins during a lunchtime. The kids were

taught the sign alphabet, some basic signing (BSL), their name, address,

about family, animals, colours and numbers. ie already had some sign

knowledge......so this helped her to feel special different, rather than just

different. It has also meant that she felt more integrated.

I hope some of the above offer you some ideas.....but if nothing else can I

say that, these " down " feelings have changed. She still has days where she

feels a little like that and other days where she has an almost adult

understanding of ctoma. For the most part I think it is a phase. I think a

great deal is to do with hormones, which seem to kick in a whole lot earlier

than when I was a girl (no, it wasnt that long ago!).

I think generally, honesty is important. If going to see another doctor isnt

to difficult to organise and not too costly.....then what have you got to

lose. It may make your daughter feel better, even if she only hears the same

thing from a new face. It might be worth having a chat with your own doctor

and explaining the situation. They may be able to offer you some more

advice, help, support. Perhaps you have a " hearing person " attached to the

hospital or school, such as the one Chelsy has? Francesca also has a lady

who comes into to school to see how things are......but her visits are rare,

because ie just tells her that everything is fine!!! (Not always very

helpful!)

Hope some of this helps a bit.....I know it's hard, and it wasnt that long

ago I really was stressed about it......but there is light at the end of the

tunnel...and quite unaided things just seemed to get better.

thinking of you