RE: Total Ossicular Restoration Prosthesis (TORP)

[Guest guest]

At 06:52 PM 5/7/2002 +0000, you wrote:

>Hi Members

>

>I am a new member. I had Cholesteatoma removed and a TORP procedure

>done in 9/01 (rt ear only). My doctor tells me my incus bone is gone

>and also part of the stapes (only foot plate remains). The mastoid is

>intact.

Welcome to the list. I have very similar c-toma damage.

>My hearing did not improve after the procedure.

Mine did, but only for a year.

>Now my doctor tells me the prosthesis device has got dislodged and I

>need another procedure where he would try to position it properly to

>get some of my conductive hearing back.

This happened to me. I had c-toma around my prosthesis and it pushed it

out of position. That's not the only reason a prosthesis is dislodged,

though. Sometimes the body just rejects a foreign body.

>Recently, when he examined me he found the prosthesis pushing against

>my ear drum (risk of perforation ?)

My second prosthesis is also doing this. He expects it to come out

sometime, but can't give me an idea of when. I feel I'm walking around

with a time bomb in my ear. Sometimes I can feel it pressing against my

ear drum, mostly when I have external pressure. It's very intermittent and

I'm always wondering if today will be the day. He seems kind of nonchalant

about it. I guess it's not a big deal to my ENT, but it sure is to

us! Fortunately, the tympanic membrane usually heals quickly. I'm

seriously reconsidering another prosthesis. I might just go to a hearing

aid. I hate the idea of another surgery, just the smell of anesthesia

while walking through the hospital or near a surgery center makes me

nauseated. I guess I'm in the wrong business, eh? Still, it's so wrong

that insurance will pay for a multi-thousand dollar surgery and won't pay

for a measly hearing aid. That's so foolish. Hearing aids are getting

smaller and better all the time due to microchip and electronic

technology. I also like the idea of being able to turn it off :-D

>Has anyone experienced this ? I am very bewildered and shocked by all

>this as I have no one to talk to.

Well, you're definitely in the right place. When I was first diagnosed, I

felt so alone. Even though my c-toma is sort of in remission, I'll always

be here for others. Feel free to vent, whine, swear, complain. We're all

ready to listen.

Diane Brunet

>Please respond.

>

>Manawar

>

>

>

>

[Guest guest]

Hi Manawar,

Welcome to our group. We are glad/sad to have you.

There are several members who have had prothesis with

various results. I truly think c-toma is a

case-by-case think. Everythink always looks great

after surgery, but many member end up in surgery a 2nd

time either for a " second look " procedure, to make

sure there is no c-toma where they can not see with an

otoscope, or the c-toma has returned.

My husband lost all of his hearing in his left ear but

can hear with a hearing aide. Other member say that

it just takes time.

Hang in there and remember we are here for you.

Michele

--- manawar89 <mike.alam@...> wrote:

> Hi Members

>

> I am a new member. I had Cholesteatoma removed and a

> TORP procedure

> done in 9/01 (rt ear only). My doctor tells me my

> incus bone is gone

> and also part of the stapes (only foot plate

> remains). The mastoid is

> intact.

>

> My hearing did not improve after the procedure.

>

> Now my doctor tells me the prosthesis device has got

> dislodged and I

> need another procedure where he would try to

> position it properly to

> get some of my conductive hearing back.

>

> Recently, when he examined me he found the

> prosthesis pushing against

> my ear drum (risk of perforation ?)

>

> Has anyone experienced this ? I am very bewildered

> and shocked by all

> this as I have no one to talk to.

>

> Please respond.

>

> Manawar

>

>

__________________________________________________

[Guest guest]

Dear Manawar, First of all welcome to the group. I have only recently found it myself & have great comfort in "talking" to people who know exactly what you are going through (well almost) I am due to have an op soon for my second prosthesis. Not exactly sure what they will try but I am willing. I have lost nearly all hearing in my C-toma ear. The nerves apparently being destroyed either by the infection in the first place or the surgery to remove the C-toma. After being almost deaf in one ear for eight years it is exciting to be giving it a another chance. Good luck, don't be scared. You will need to have your ear checked for the rest of your life. I find accepting that has made it almost as "normal" as having pap smears! Not a good comparison but neither is exactly enjoyable but necessary! Take care Audrey Total Ossicular Restoration Prosthesis (TORP) Hi MembersI am a new member. I had Cholesteatoma removed and a TORP procedure done in 9/01 (rt ear only). My doctor tells me my incus bone is gone and also part of the stapes (only foot plate remains). The mastoid is intact.My hearing did not improve after the procedure.Now my doctor tells me the prosthesis device has got dislodged and I need another procedure where he would try to position it properly to get some of my conductive hearing back. Recently, when he examined me he found the prosthesis pushing against my ear drum (risk of perforation ?)Has anyone experienced this ? I am very bewildered and shocked by all this as I have no one to talk to. Please respond.Manawar

[Guest guest]

This sounds exactly like what happened to me.

My prosthesis became dislodged and was removed when I had my third surgery.

My surgeon told me that it becomes dislodged easily because it has to be

wedged into the area, it has nothing to attach to. Like you, my hearing

did not improve. The prosthesis did cause a perforation and needed to be

removed and the eardrum repaired. I would listen to your doctor. He seems

to know what he's talking about.

Cheryl

My hearing did not improve after the procedure.

Now my doctor tells me the prosthesis device has got dislodged and

I

need another procedure where he would try to position it properly

to

get some of my conductive hearing back.

Recently, when he examined me he found the prosthesis pushing against

my ear drum (risk of perforation ?)

[Guest guest]

Hi Manawar,

I had a prosthesis put in my left ear about 2 years ago, my ear bones

destroyed like yours except that I had a mastoidecotmy as well. My

prostetic presses against my eardrum as well. It hasn't pushed through as

yet, nor does my ear seem to be rejecting it. It has restored my hearing to

just inside the normal range of hearing. My doctor did say before he did

the procedure that there is always a chance it might get dislodged, or that

he might have to reposition it to regain some hearing.

We care,

Jane

>From: " manawar89 " <mike.alam@...>

>Reply-cholesteatoma

>cholesteatoma

>Subject: Total Ossicular Restoration Prosthesis (TORP)

>Date: Tue, 07 May 2002 18:52:42 -0000

>

>Hi Members

>

>I am a new member. I had Cholesteatoma removed and a TORP procedure

>done in 9/01 (rt ear only). My doctor tells me my incus bone is gone

>and also part of the stapes (only foot plate remains). The mastoid is

>intact.

>

>My hearing did not improve after the procedure.

>

>Now my doctor tells me the prosthesis device has got dislodged and I

>need another procedure where he would try to position it properly to

>get some of my conductive hearing back.

>

>Recently, when he examined me he found the prosthesis pushing against

>my ear drum (risk of perforation ?)

>

>Has anyone experienced this ? I am very bewildered and shocked by all

>this as I have no one to talk to.

>

>Please respond.

>

>Manawar

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

[Guest guest]

francesca has a hearing aid. she used it for the first year. she has long

hair, so it didnt notice too much and she wore it behind the ear.

she tells me that although it amplified the sound...it amplified all

sounds...which means that the background nose was as loud as the voices she

was trying to hear.

she has basically said, that unless she's in quiet surroundings....it isnt

much better.

she has also got to an age where she too feels self conscious using

it......so refuses to wear it, and that's ok with me.

however...her hearing has improved a bit since stopping wearing it...as the

brain has to compensate that much more...it's only a tiny bit...probably

doesnt make much difference........something else that may have caused the

hearing to improve in that ear was the circulation of air...it helped it heal

better and keep it dry...so...who knows?

i honestly think it's whatever suits the individual best.

having said that.......she could only use it in the ear where she canal wall

up surgery and not the side with wall down.

hope it helps a bit

julie

[Guest guest]

Hi Jane

I am so glad to hear your hearing was restored. This gives me hope that my second surgery may have a positive outcome.

I fly a lot on my job. Have you flown w/the prosthesis pressing against your ear drum ? and if so any precautions you may recommend will be very helpful to me. I spoke to my Dr. the other day and he recommended I spray my nose w/Afrin before taking off and 20 mins before landing to keep the E-tube open.

Currently, I wear a BTE hearing aid (rt ear) to hear but it makes me feel like I've become handicapped (very frustrating). Each morning I have to remind myself to put it on.

I keep telling myself this is a temporary condition and I shall overcome. Did you go through similar emotions ? This experience has forced me in some ways to find a determination in myself to survive each work day.

Best Regards,

Mike Alam

Total Ossicular Restoration Prosthesis (TORP)>Date: Tue, 07 May 2002 18:52:42 -0000>>Hi Members>>I am a new member. I had Cholesteatoma removed and a TORP procedure>done in 9/01 (rt ear only). My doctor tells me my incus bone is gone>and also part of the stapes (only foot plate remains). The mastoid is>intact.>>My hearing did not improve after the procedure.>>Now my doctor tells me the prosthesis device has got dislodged and I>need another procedure where he would try to position it properly to>get some of my conductive hearing back.>>Recently, when he examined me he found the prosthesis pushing against>my ear drum (risk of perforation ?)>>Has anyone experienced this ? I am very bewildered and shocked by all>this as I have no one to talk to.>>Please respond.>>Manawar>_________________________________________________________________Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

[Guest guest]

mike,

i was wondering how your hearing aid works. do you like/hate it?

does anyone else use hearing aids?

if only i had the money to get a hearing aid, i would get one.

They are so expensive...

although once my mother's boss offered to give me his dead mother's

hearing aids. well, i passed....

But I am still thinking about getting one, and would like to know what the

sound is like, and what the annoyances are with it.

just wondering...

__________________________________________________

[Guest guest]

,

I have a hearing aid and I plan to get another. The one I currently have is

an in-the-ear model, meaning its visible but fits snugly in the ear. My

previous aid was an in-the-canal hearing aid. As a backup I purchased two

behind-the-ear models which I use if/when mine needs repaired. I like the

one I have now. I can hear so much better with it than with the in-the-canal

aid. Mine is so comfortable I forget to remove it before retiring until I

hear the whistle it makes when I attempt to lie on that side.

I also had a telephone coil installed in mine. This coil allows you to use

any hearing aid compatible phone. It was necessary for me to purchase the

coil because of my work; however, I recommend it if you use the phone a lot

or just don't want to place attachments on your phone. If you travel it will

be so much easier with the coil in place. Basically, you have a switch on

the aid that makes phone usage easier and clearer. I believe the coil was

about $30 and you should get it done when purchasing the aid. Otherwise, you

will have to pay extra charges to add it later. A hearing aid compatible

phone does not mean that you can use any hearing aid with it. It means that

it will work with a hearing aid that has the coil in place.

Hearing aids are somewhat expensive; however, perhaps you can set up an

arrangement for installment payments. I did that with this last one I

purchased. There are many manufacturers and models to choose from so

hopefully you can find one that matches your price range. After purchasing

this hearing aid, I realized exactly how many sounds I had been missing and

was overjoyed to hear the birds and rainfall. Sounds corny but its true.

I recommend it if you can find a way to pay for it.

Connie

----Original Message Follows----

From: richard <drastician@...>

Reply-cholesteatoma

cholesteatoma

Subject: RE: Total Ossicular Restoration Prosthesis (TORP)

Date: Thu, 9 May 2002 08:48:00 -0700 (PDT)

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mike,

i was wondering how your hearing aid works. do you like/hate it?

does anyone else use hearing aids?

if only i had the money to get a hearing aid, i would get one.

They are so expensive...

although once my mother's boss offered to give me his dead mother's

hearing aids. well, i passed....

But I am still thinking about getting one, and would like to know what the

sound is like, and what the annoyances are with it.

just wondering...

__________________________________________________

[Guest guest]

Hi

I have been given a BTE which works so far as it amplifies the sound so that I can hear. It does not suppress surrounding noise to make spoken words better heard by my weak ear . That is a problem. I have not invested money in purchasing one because I intend to go back for another surgery.

You could ask your Dr. or the audiologist to loan you a H aid to see if you are a candidate for a hearing aid. They are usually pretty co-operative. That is how I got mine. Good Luck

Mike

-----Original Message-----From: richard [mailto:drastician@...]Sent: Thursday, May 09, 2002 11:48 AMcholesteatoma Subject: RE: Total Ossicular Restoration Prosthesis (TORP)mike,i was wondering how your hearing aid works. do you like/hate it?does anyone else use hearing aids?if only i had the money to get a hearing aid, i would get one. They are so expensive...although once my mother's boss offered to give me his dead mother'shearing aids. well, i passed....But I am still thinking about getting one, and would like to know what thesound is like, and what the annoyances are with it.just wondering...__________________________________________________

[Guest guest]

Hi ,

My husband has a hearing aide and he loves it. He had

not been able to hear out of his left ear for 2 years.

He got because he was having surgery on his right ear

and was told he may have problems hearing out of the

right ear for a couple of weeks. Needless to say,

that didn't sit well.

His left ear was operated on here in Klamath Falls but

his right ear was done at Oregon Health Sciences

University in Portland. While at a pre-op

appointment, my husband was getting his hearing tested

and I was waiting in the waiting room. Another man

came in with his hearing aide that was not working.

They took his aide to send in for repair, but gave him

a loaner in the meantime. I thought about the

conversation I had overheard for a couple of weeks

before I called OHSU and asked if Larry could have a

loaner hearing aide. They said yes, they needed a

$150 deposit, which they would hold until the hearing

aide was returned. Although it was a loaner, it was

made specifically for my husband.

Maybe this is an option for you to explore. We still

have the hearing aide, and OHSU still has my check for

$150. I am sure they will call one day wanting it

back, but I plan to try and strike a deal to buy it on

payments from them.

Hope this was helpful.

Michele

--- richard <drastician@...> wrote:

> mike,

> i was wondering how your hearing aid works. do you

> like/hate it?

> does anyone else use hearing aids?

>

> just wondering...

>

>

> __________________________________________________

>

[Guest guest]

Hi ,

Just a little more info. My hubby had a canal wall

down radical mastoidectomy. He has a maximal

conductive hearing loss in his left ear. The

audiologist said his type of hearing loss made him a

perfect candidate for a hearing aide. Also, the

behind the ear hearing aides, which my husband has,

are not as bulky and noticable as they used to be.

Michele

--- richard <drastician@...> wrote:

> mike,

> i was wondering how your hearing aid works. do you

> like/hate it?

> does anyone else use hearing aids?

>

> just wondering...

>

>

> __________________________________________________

>

[Guest guest]

Hi All, I have just read with interest all the comments about hearing aides. They gave me one after my second op which was to insert prothesis (first op being radical mastoidectomy) Maybe they are a bit "backward " in Australia but they gave me two aides. One sits behind my C-toma ear with a cord that leads to a fitted aide on my "good ear". Apparently working like a microphone to send sound from my left "non hearing" ear to my good one. The canal is now too large in my operated ear (made so for easier access) to fit one they tell me. Besides that I basically have zilch hearing anyway due to destruction of nerves already. I used it for a bout a year but got sick of the cord coming apart and tangled in my hair. I also experienced the problem of all sounds being magnified. On a positive note it WAS great to hear birds and other sounds I had not heard from some time. I now use it rarely, usually to hear a movie where often the sound varies and I miss a lot of the script if there is any background noise. Often quite a lot with teenagers! I had to "fight" the authorities to be given a free aide. Being a single Mum I could not afford the $1000 they expected me to pay! Luckily I won. However the worst thing happened...I was wearing my aide to town and when getting out of the car did not notice one side fell off, the cord had come apart yet again. Well I did find it but a car had run over it!! It still works amazingly but I have not been able to afford another replacement. If politicians had hearing problems they would be free I'm sure!! Basically I say it's different for all but the joy of regained sound is amazing. Oh I did find it hard to wear my glasses at the same time. I am certainly hoping for a good result next op ...second try with prosthesis. Audrey --- richard <drastician@...> wrote:> mike,> i was wondering how your hearing aid works. do you> like/hate it?> does anyone else use hearing aids?> > just wondering...> > > __________________________________________________>

[Guest guest]

I am a new member. I had Cholesteatoma removed and a TORP procedure done in 9/01 (rt ear only). My doctor tells me my incus bone is gone and also part of the stapes (only foot plate remains). The mastoid is intact.

My hearing did not improve after the procedure.

Hi Manawar,

Welcome to the group! My daughter Alyssa (9) has the TORP in her left ear, and only has the footplate of the stapes left as well. Unfortunatley she has a total sensoneural hearing loss in that ear. It didn't happen right away, but rather sometime beween her second and third surgeries, we don't now exactly when or why (even her doctor is perplexed). Her doctor did clean and reposition it in the second surgery but it never was pushing through the TM. Good luck to you. Glad you found us! I don't post often (as I have a 14 month old as well and barely get online lately!) but try to read the posts as I can. Hope everyone is doing well!

[Guest guest]

Hi Mike,

I still call my left side my deaf side. My hearing used to be at the top of

the normal hearing range, and my right ear is still much better than my left

so in many ways I still feel hearing impaired.

Yes, I've thought about " what if I don't get any hearing back " or " what if I

lose my hearing again " It is still a possibility. I don't take my hearing

for granted. I never have. That I kept perfect hearing for so long was

only by the grace of God. My right ear drum was so thin that doctors could

see all my hearing bones through it. And it was very scarred. I shouldn't

have had perfect hearing to begin with.

My hearing in my left ear is often muffled, like there is fluid in my ear.

There isn't any fluid, I still have a tube in it. I assume the muffled

sound is because it pushes against the ear drum. I also have a lot of

tinnitus in that ear, but I had that before any surgery.

I havn't flown since I've had the prostetic but I live in Colorado and go to

high altitude regularly and it doesn't effect it any. Acutally some times I

can actually hear better at altitude.

My doctors have always recommended afrin for flying. My eustatian tube have

never worked like they are supposed to. My ears never adjusted for pressure

changes on their own, I have always had to pop my ears myself. I still do.

Hang in there. I understand your feelings. Just keep in mind we are all

handicapped in some way. It just shows more in some. And a hearing aid,

though it is a pain, many would trade you for it in a minute. And at least

the hearing aid helps. On some who have had nerve dammage, nothing helps.

You are ALWAYS welcome to share your feelings with us here. We have all

felt the same at one time or another.

When I woke up from my first surgery, my left ear was all full of packing

and I couldn't hear out of it, and my doc had put a tube in my right ear and

I couldn't hear out of it but for a very little bit. I felt VERY isolated

and depressed. I do understand how you feel. I had no idea if anything

would ever change for the better. Focus as best as you can on what you do

have.

God bless,

Jane

>From: " Alam,Mike " <mike.alam@...>

>Reply-cholesteatoma

> " 'cholesteatoma ' " <cholesteatoma >

>Subject: RE: Total Ossicular Restoration Prosthesis (TORP)

>Date: Thu, 9 May 2002 11:13:19 -0400

>

>Hi Jane

>

>I am so glad to hear your hearing was restored. This gives me hope that my

>second surgery may have a positive outcome.

>

>I fly a lot on my job. Have you flown w/the prosthesis pressing against

>your

>ear drum ? and if so any precautions you may recommend will be very helpful

>to me. I spoke to my Dr. the other day and he recommended I spray my nose

>w/Afrin before taking off and 20 mins before landing to keep the E-tube

>open.

>

>Currently, I wear a BTE hearing aid (rt ear) to hear but it makes me feel

>like I've become handicapped (very frustrating). Each morning I have to

>remind myself to put it on.

>

>I keep telling myself this is a temporary condition and I shall overcome.

>Did you go through similar emotions ? This experience has forced me in some

>ways to find a determination in myself to survive each work day.

>

>Best Regards,

>

>Mike Alam

>

>

>

> Total Ossicular Restoration Prosthesis (TORP)

> >Date: Tue, 07 May 2002 18:52:42 -0000

> >

> >Hi Members

> >

> >I am a new member. I had Cholesteatoma removed and a TORP procedure

> >done in 9/01 (rt ear only). My doctor tells me my incus bone is gone

> >and also part of the stapes (only foot plate remains). The mastoid is

> >intact.

> >

> >My hearing did not improve after the procedure.

> >

> >Now my doctor tells me the prosthesis device has got dislodged and I

> >need another procedure where he would try to position it properly to

> >get some of my conductive hearing back.

> >

> >Recently, when he examined me he found the prosthesis pushing against

> >my ear drum (risk of perforation ?)

> >

> >Has anyone experienced this ? I am very bewildered and shocked by all

> >this as I have no one to talk to.

> >

> >Please respond.

> >

> >Manawar

> >

>

>

>_________________________________________________________________

>Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

><http://explorer.msn.com/intl.asp.>

>

>

>

>

[Guest guest]

Hi Jane

Thanks for such an encouraging reply. You are right, we should count our blessings and make the most of what we have remaining; but there is another side of me which says you deserve better; try harder; give yourself a chance. I guess that is why I am going for the second surgery.

I flew into Atlanta yesterday from New Jersey and I used Afrin before taking off but forgot to use it 20 mins before landing (as my Dr. had told me to do so). I have to be more careful next time.

There are so many unanswered questions sometimes I feel I have put my life on hold until this situation w/my right ear is resolved. I know I should not do this because I will be more disappointed if the 2nd surgery fails as well but I can't help it.

Thanks again for supporting me.

Best Regards,

Mike Alam

Total Ossicular Restoration Prosthesis (TORP)

> >Date: Tue, 07 May 2002 18:52:42 -0000

> >

> >Hi Members

> >

> >I am a new member. I had Cholesteatoma removed and a TORP procedure

> >done in 9/01 (rt ear only). My doctor tells me my incus bone is gone

> >and also part of the stapes (only foot plate remains). The mastoid is

> >intact.

> >

> >My hearing did not improve after the procedure.

> >

> >Now my doctor tells me the prosthesis device has got dislodged and I

> >need another procedure where he would try to position it properly to

> >get some of my conductive hearing back.

> >

> >Recently, when he examined me he found the prosthesis pushing against

> >my ear drum (risk of perforation ?)

> >

> >Has anyone experienced this ? I am very bewildered and shocked by all

> >this as I have no one to talk to.

> >

> >Please respond.

> >

> >Manawar

> >

>

>

>_________________________________________________________________

>Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

><http://explorer.msn.com/intl.asp.>

>

>

>

>

[Guest guest]

Hi Mike,

By all means go for the second surgery! WE should try every means we are

able and willing to, and not just accept any pat answers we recieve.

Medicine and electronics continue to change and improve over the years. If

they are not able to fix it now, maybe they will be able to in the future.

There is always hope.

God bless, Jane

>From: " Alam,Mike " <mike.alam@...>

>Reply-cholesteatoma

> " 'cholesteatoma ' " <cholesteatoma >

>Subject: RE: Total Ossicular Restoration Prosthesis (TORP)

>Date: Sun, 12 May 2002 16:51:52 -0400

>

>Hi Jane

>

>Thanks for such an encouraging reply. You are right, we should count our

>blessings and make the most of what we have remaining; but there is another

>side of me which says you deserve better; try harder; give yourself a

>chance. I guess that is why I am going for the second surgery.

>

>I flew into Atlanta yesterday from New Jersey and I used Afrin before

>taking

>off but forgot to use it 20 mins before landing (as my Dr. had told me to

>do

>so). I have to be more careful next time.

>

>There are so many unanswered questions sometimes I feel I have put my life

>on hold until this situation w/my right ear is resolved. I know I should

>not

>do this because I will be more disappointed if the 2nd surgery fails as

>well

>but I can't help it.

>

>Thanks again for supporting me.

>

>Best Regards,

>

>Mike Alam

>

>

>

> Total Ossicular Restoration Prosthesis (TORP)

> > >Date: Tue, 07 May 2002 18:52:42 -0000

> > >

> > >Hi Members

> > >

> > >I am a new member. I had Cholesteatoma removed and a TORP procedure

> > >done in 9/01 (rt ear only). My doctor tells me my incus bone is gone

> > >and also part of the stapes (only foot plate remains). The mastoid is

> > >intact.

> > >

> > >My hearing did not improve after the procedure.

> > >

> > >Now my doctor tells me the prosthesis device has got dislodged and I

> > >need another procedure where he would try to position it properly to

> > >get some of my conductive hearing back.

> > >

> > >Recently, when he examined me he found the prosthesis pushing against

> > >my ear drum (risk of perforation ?)

> > >

> > >Has anyone experienced this ? I am very bewildered and shocked by all

> > >this as I have no one to talk to.

> > >

> > >Please respond.

> > >

> > >Manawar

> > >

> >

> >

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> >