Re: SCARED ABOUT WHAT I AM READING

[Guest guest]

please could you keep me informed with any info you get as I am the mother of a seven year old girl phoebe who has just been diagnosed after three years of worry that they could not sort the ear infections it looks like we are still at the start, thanks to the site this comunication site was found on it looks like the english doctors have been making it worse telling me she will not get her hearing back it turns out there is hope its just a long way off. there is some hope just tell me if you get an answer off someone it has worked for. wish you well and hope, sonia

Sent from - a smarter inbox.

[Guest guest]

I have a hunk (rosette) of plastic in my ear. It's been there for 42 years.

Life is not normal. Just because they do or don't put a hunk of metal in your child's ear

does not mean that they child will or won't have a normal life.

1)People are allergic to titanium and have many problems.

Some people are, not all. Otherwise I'll be in trouble when they replace my knees.

2)People have ocntinual problems, infections, followup surgeries - is this just for those with acquired cholesteatomas?

Everyone get ear infections. We with C-Tomas are more prone to get them. Life happens.

3)People still don't regain hearing after implant

Very true. I only have 60% in my bad ear. I can't hear very

high pitched sounds, but, everything else is ok.

4)Implant has slipped

I was told mine would probably slip out when I was about 10. I am 47 now. It's still working.

Besides the occational ear infection, my main problem is when I swim, I have to be careful not got get water

way up inside, past my eardrum (what eardrum I have left). If this happens I have bad dizzy spells. It has happened to me about 3 times in my life.

I know you are scared. When I was diagnosed, all my Mom heard was 'tumor'. After the doctor explained things, she was still very scared. But, she delt with it. Like I said, I have had my implant for 42 years and I have had a sort-of-normal life. I snorkel (I can't go down below 10 feet or so, but I still go), I fly in airplanes (occationally). I do the heavy spinning rides at DisneyWorld (like Mission Space). Your child has been delt a crummy hand, but, all you can do is play the hand or drop out.

I play the hand I was delt!

If you believe in God, pray. It helps me!

Walter Clayton

On Jan 15, 2008 1:15 PM, sallyhackett <srhackett@...> wrote:

I realize that it is better to be aware than taken by surprise and maybe I am naive or still in shock of this crazy 'disease' for my 5 yr old.I thought after the second surgery to put the prosthesis in - life would go on and be 'normal'. Everything I read here leads me to believe this is not true. Here is wha scares me based on what I have read..1)People are allergic to titanium and have many problems

2)People have ocntinual problems, infections, followup surgeries - is this just for those with acquired cholesteatomas?3)People still don't regain hearing after implant4)Implant has slipped5) it seems to go on..

would you recommend NOT having hte prosthesis put in?Has anyone had a positive, non-reoccuring experiences?Who is about 3-5 years post op from prosthesis and what are you experiencing?

-- Remember: If you light a man a fire, you warm him for the night.

If you light a man ON fire, you warm him for the rest of his life.

[Guest guest]

I thought after the second surgery to put the prosthesis in - life would go on and be 'normal'. Everything I read here leads me to believe this is not true. Here is wha scares me based on what I have read..1)People are allergic to titanium and have many problems2)People have ocntinual problems, infections, followup surgeries - is this just for those with acquired cholesteatomas?3)People still don't regain hearing after implant4)Implant has slipped5) it seems to go on..would you recommend NOT having hte prosthesis put in?Has anyone had a positive, non-reoccuring experiences?Who is about 3-5 years post op from prosthesis and what are you experiencing?

Hi Sally

I think it's improtant, especially with a child who is still in process of acquiring language, that you grab any opportunity available to regain as much hearing as possible. Even growing up with partial hearing loss can have a profound on one's life. The more you struggle with hearing the more socially isolated you tend to become.

Titanium is used for prostheses precisely because it's a good sound conductor and at the same is biloigically inert. We now now that somebody has a reaction to it but that would have to be a very rare occurence otherwise titanium would never have used in the first place.

Nothing ever works quite according to plan but for most people reconstruction works well and makes a big difference. You also have to remember that on this board you mostly going to hear about the things that go wrong.

As far as recurrence of disease goes, it is,unfortunately, the nature of the beast. But it's is not inevitable. With a canal-wall up operation I've heard there is about a 50/50 chance at worst of recurrence. Again, you are more likely to hear from those fwho do have recurrence because the success stories don't always stick around.

Phil

[Guest guest]

Sally,

Many people are not allergic to titanium and don't have problems. I'm

also not certain that titanium is the only material used for artificial

hearing bones. Cadaver bones can also be used. In some cases, like my

left ear, the doctor reshaped my hearing bones and put them back in

(doesn't work so good though).

I agree with Phil. You must fight for every bit of hearing for your

child. Even as an adult there is quite a social price to pay for being

hard of hearing. People think that you just get hearing aids and

everything is all better.

In an effort to cut down on the number of surgeries, I'd seek out the

best otologist/neurotologist that you can find.

I'll be disease free for three years in May. I hope that it continues,

but just in case ... I'll be sticking with the routine visits to the

doctor ... the next one is in February.

It has been difficult as of late with my hearing being less than

optimal, but I'll get by. I'm still looking for a better solution than

hearing aids for hearing during a meeting.

Life will go on and your 5 year old certainly has a Mom that cares.

Teach your child to live life to its fullest. Teach them to never quit

- to never give up. There's a wonderful life to live and this crappy

cholesteatoma stuff can't be allowed to get in the way of that.

All the best,

Matt

sallyhackett wrote:

I realize that it is better to be aware than taken by surprise and

maybe I am naive or still in shock of this crazy 'disease' for my 5

yr old.

I thought after the second surgery to put the prosthesis in - life

would go on and be 'normal'. Everything I read here leads me to

believe this is not true. Here is wha scares me based on what I

have read..

1)People are allergic to titanium and have many problems

2)People have ocntinual problems, infections, followup surgeries - is

this just for those with acquired cholesteatomas?

3)People still don't regain hearing after implant

4)Implant has slipped

5) it seems to go on..

would you recommend NOT having hte prosthesis put in?

Has anyone had a positive, non-reoccuring experiences?

Who is about 3-5 years post op from prosthesis and what are you

experiencing?

--

[Guest guest]

Hi Sally,

After 6 surgeries and 4 c'tomas, my son had the ossicles removed and

a prosthesis implanted. So far, 18 months post op, he's doing

great. No sign of recurrance and his hearing is 100%. He's 12 and

plays soccer, basketball and baseball. We just don't allow football,

for fear the prosthesis could be dislodged. Good luck to you. My

son was also diagnosed at age 5. You are right to be informed and it

is a condition that will have to be followed throughout his life. We

had our regular 6-month appointment yesterday, and he got a great

report.

God Blesss,

Sheri

>

> I realize that it is better to be aware than taken by surprise and

> maybe I am naive or still in shock of this crazy 'disease' for my 5

> yr old.

>

> I thought after the second surgery to put the prosthesis in - life

> would go on and be 'normal'. Everything I read here leads me to

> believe this is not true. Here is wha scares me based on what I

> have read..

>

> 1)People are allergic to titanium and have many problems

> 2)People have ocntinual problems, infections, followup surgeries -

is

> this just for those with acquired cholesteatomas?

> 3)People still don't regain hearing after implant

> 4)Implant has slipped

> 5) it seems to go on..

>

>

> would you recommend NOT having hte prosthesis put in?

> Has anyone had a positive, non-reoccuring experiences?

> Who is about 3-5 years post op from prosthesis and what are you

> experiencing?

>

[Guest guest]

Sally- I know exactly how you feel- when my son was diagnosed last

year I went online and read everything I could find. Most of it was

terrifying. But as someone else mentioned above, a lot of times

people who have success with their surgeries stop coming to these

sites and go on to their perfectly (relatively speaking) normal

lives. I have been following this site so that I'm aware of

problems that could potentially come up with my son- like the

titanium allergy. However (and he's only 2 months out of the second

surgey), my son is just fine. His hearing is almost completely

restored, he feels great, and there is no evidence of returning c-

toma cells. He will continue to be monitored, but all in all, he is

leading his normal crazy 6 year old life.

Hang in there; it is a tough process. But there are plenty of happy

endings out there. If you have any questions, feel free to email me

through this site!

Good luck!

erin

>

> I realize that it is better to be aware than taken by surprise and

> maybe I am naive or still in shock of this crazy 'disease' for my

5

> yr old.

>

> I thought after the second surgery to put the prosthesis in - life

> would go on and be 'normal'. Everything I read here leads me to

> believe this is not true. Here is wha scares me based on what I

> have read..

>

> 1)People are allergic to titanium and have many problems

> 2)People have ocntinual problems, infections, followup surgeries -

is

> this just for those with acquired cholesteatomas?

> 3)People still don't regain hearing after implant

> 4)Implant has slipped

> 5) it seems to go on..

>

>

> would you recommend NOT having hte prosthesis put in?

> Has anyone had a positive, non-reoccuring experiences?

> Who is about 3-5 years post op from prosthesis and what are you

> experiencing?

>

[Guest guest]

Hi Sally,

I had a titanium prosthesis put in about 12 years ago & so far, no allergies and

I consider

the ear with the prosthesis to be my " good " ear so it is still working. Titanium

is also a

component of the BAHA implant that I had put in last year & I have not had any

problems

with that either, despite having allergies to sterling silver and most other

commonly-used

metals. I do still have to wear a hearing aid along with the BAHA device but

they are

continually improving hearing aid technology so in the future, who knows? The

BAHA is

working much better for me on my " bad " side than the hearing aid did before so I

would

definitely recommend it as another option. I still struggle with hearing

outdoors,

auditoriums, & other situations with a lot of background noise, but it has

helped me a ton

at work & in meetings & presentations.

I completely agree with Matt & Phil about finding the absolute best doctor to

treat your

child & fight for him/her if necessary due to insurance complications, etc.

Unfortunately,

my first surgeries as a child (ages 2.5-9 years old) were done by an ENT who had

little or

no knowledge of pediatric cholesteatoma and I was told later by experienced

surgeons

that he should have referred me on to another doctor since his interventions did

more

harm than good. There have also been other ear doctors that I have needed to see

in the

past to obtain a referral , due to my insurance coverage at the time, before I

could see my

specialist, that were very willing to take on my case, despite their lack of

experience.

Sometimes, you really need to push the doctors or insurance to move on to that

next level.

I have also worked with many surgeons for my job & I know that is not uncommon

regardless of specialist type. They do need to get surgical experience but you

want to

make sure it is not on your child.

Having dealt with hearing loss my whole life ( I am now 36), I also agree that

there is still a

significant stigma associated with it, but parents can really make a difference

with how

well a child adjusts to it. Since I grew up thinking it was something to be

ashamed of, I still

have a hard time speaking up about my hearing loss. I have long hair & I do not

have a

noticable speech impediment so most people would not know if I didn't tell them.

I have

become a member of Hearing Loss Association of America & the meetings have been

very

helpful in providing me with becoming more outspoken & allowing me to meet

others who

are hard of hearing as well. They do have active chapters throughout the U.S.

As for the possibility of an implant slipping, I have had that happen with types

other than

the titanium. However, reconstruction surgeries are relatively minor compared to

ones for

cholesteatoma removal so if the prosthesis slips, they can always go back in and

try

another type, as long as there is something to anchor the replacement.

Hope this information helps, sorry it got too long-winded! My 6 year old had to

have a

minor procedure last year and I thought that was very stressful! Luckily, so

far, neither of

my kids have seemed to have inherited my ear problems. My prayers are with you

and your

child for excellent hearing and I hope that he/she never has to have another ear

surgery

again.

Best Wishes,

--- In cholesteatoma , "

[Guest guest]

Hi,

I am two weeks post-op with a prosthesis and my hearing seems back

to normal already. I recently met with my doctor and he said that

my hearing should improve even more. I was scared that I wouldn't

get very much hearing back as well after reading this board, but

there are success stories.

And, it depends on your doctor. This last surgery was my third

surgery. The first one was with an ENT and he placed a prosthesis

in after removing the cholesteatoma. I regained maybe ten decibels

from that prosthesis and did not even notice any improvement in my

hearing. Now, after having surgery with an otologist, I have

regained almost all of my hearing back and will post on here after I

find out for sure from an audiologist how much I have gotten back.

But, just from plugging my ear and unplugging it, I can tell that it

is almost normal. Before, it didn't even make a difference when I

plugged my ear.

So, I definitely recommend having a prosthesis put in, but only by

an expert doctor. And, the doctor needs to be an otologist. In my

opinion, whether or not the prosthesis will work depends on your

doctor. I even had a TORP prosthesis put in and my hearing is great!

Good Luck!

Millie

[Guest guest]

Sherri,

Did your son have a TORP or PORP? Does he ever 'head' the ball in

soccer? My 11yr old son is scheduled for his 2nd look, and

hopefully TORP, surgery this summer. He is an avid soccer

player/goalie. The surgeon told us he would be able to continue to

play soccer/goalie after his recovery. When asked specifically

about 'heading' the ball, he stated that no one should ever 'head'

the ball, whether they have prosthesis or not. I'm still concerned

about him getting bumped in the head as a goalie and shifting the

TORP.

I appreciate input from anyone with experience in this area. If a

bump to the head did move your prosthesis, how hard was the bump?

Thanks -

> >

> > I realize that it is better to be aware than taken by surprise

and

> > maybe I am naive or still in shock of this crazy 'disease' for

my 5

> > yr old.

> >

> > I thought after the second surgery to put the prosthesis in -

life

> > would go on and be 'normal'. Everything I read here leads me to

> > believe this is not true. Here is wha scares me based on what

I

> > have read..

> >

> > 1)People are allergic to titanium and have many problems

> > 2)People have ocntinual problems, infections, followup

surgeries -

> is

> > this just for those with acquired cholesteatomas?

> > 3)People still don't regain hearing after implant

> > 4)Implant has slipped

> > 5) it seems to go on..

> >

> >

> > would you recommend NOT having hte prosthesis put in?

> > Has anyone had a positive, non-reoccuring experiences?

> > Who is about 3-5 years post op from prosthesis and what are you

> > experiencing?

> >

>