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Cleft Palate Patients

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Hi, I am new here and want to hear from some people who are having

orthognatic surgery to repair cleft palates. I am 41 years old, been

through surgeries before (LaForte, etc.) unsuccessfully and am now

having the orthognatic surgery done. I would love to hear success

stories from adult patients who have had this done, or are in the

process. I have just embarked on this process after much soul-

searching. I am only in the very, very beginning. I just yesterday

had the metal pendulum appliance fitted to my teeth (annoying!) and

will be having surgically-assisted rapid palate expansion surgery

soon. I am full of anxiety about it, as it will initially increase my

cleft, not decrease it. I am hopeful to hear from others who have

been through this.

I know in the end it will all be worth it but the process is SO

arduous. I have a great husband, a fantastic job, and two fabulous

kids with special needs. I felt this was something I needed to do and

am excited about it but scared at the same time. Too bad we cannot

all just float away to a desert island while this is being done and

come back complete! I have great friends who support me and all, but

none of them can truly understand what having facial anomalies is

like. It goes way beyond simply not feeling attractive, like those

people on the reality shows. Please! We should have our own reality

show.

Anyway, I would very much like to hear from fellow cleft palate

patients. You can e-mail me privately or post to the board, I will be

reading messages.

Best of luck to all,

Suzanne

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There is a cleft palate board run by a mom whose child was a cp

patient, and who had the surgery. You may find more responses there

to your specific needs, and I am sorry that I do not have the link.

You might check the links here, and on OSS 2.

Not at all that you are not welcome here -- of course, you are, and I

think I speak for everyone in wishing you well and offering you all

the support we can give.

I don't know about the cleft opening more. I do know that people who

have Surgically Assisted Palate Expansion are apt to get gaps between

their front teeth, so it makes sense to me that the underlying bone

and tissue also open. Most dislike it a lot! But it closes quickly,

once the orthodontists start working on that project. I hope yours

will, as well.

I don't know whether I could have put up with those expansion

devices, and was fortunate that my ortho was able to broaden my

palate with braces alone. But I can tell you that most reports are

that they're tough to deal with for the first couple of weeks, then

it gets much better. I hope yours does, as well.

I didn't have a lot of facial anomaly, but had major mouth troubles --

periodontic style -- which made my lower advancement surgery

important to my general health. I do sympathize with those who find

their appearances challenging, although I fail to understand those

who choose to make others' lives difficult for such reasons.

Best to you,

Cammie

> Hi, I am new here and want to hear from some people who are having

> orthognatic surgery to repair cleft palates. I am 41 years old,

been

> through surgeries before (LaForte, etc.) unsuccessfully and am now

> having the orthognatic surgery done. I would love to hear success

> stories from adult patients who have had this done, or are in the

> process. I have just embarked on this process after much soul-

> searching. I am only in the very, very beginning. I just yesterday

> had the metal pendulum appliance fitted to my teeth (annoying!) and

> will be having surgically-assisted rapid palate expansion surgery

> soon. I am full of anxiety about it, as it will initially increase

my

> cleft, not decrease it. I am hopeful to hear from others who have

> been through this.

>

> I know in the end it will all be worth it but the process is SO

> arduous. I have a great husband, a fantastic job, and two fabulous

> kids with special needs. I felt this was something I needed to do

and

> am excited about it but scared at the same time. Too bad we cannot

> all just float away to a desert island while this is being done and

> come back complete! I have great friends who support me and all,

but

> none of them can truly understand what having facial anomalies is

> like. It goes way beyond simply not feeling attractive, like those

> people on the reality shows. Please! We should have our own reality

> show.

>

> Anyway, I would very much like to hear from fellow cleft palate

> patients. You can e-mail me privately or post to the board, I will

be

> reading messages.

>

> Best of luck to all,

> Suzanne

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Guest guest

I think the link Cammie was referring to is THE CLEFT ADVOCATE. I

believe it's in the links on site two at

http://health.groups.yahoo.com/orthognathicsurgerysite2

or try the geocities site at

http://www.geocities.com/orthognathicinfo/ looking under CLUBS

If those don't work, try a google search.

I hear you on floating away to a desert island - in all cases of

medical/dental work, I have often fantasized about being able to

leave a part of my body behind and pick it up later, or just plug in

a new one from a catalogue!

> Hi, I am new here and want to hear from some people who are having

> orthognatic surgery to repair cleft palates. I am 41 years old,

been

> through surgeries before (LaForte, etc.) unsuccessfully and am now

> having the orthognatic surgery done. I would love to hear success

> stories from adult patients who have had this done, or are in the

> process. I have just embarked on this process after much soul-

> searching. I am only in the very, very beginning. I just yesterday

> had the metal pendulum appliance fitted to my teeth (annoying!)

and

> will be having surgically-assisted rapid palate expansion surgery

> soon. I am full of anxiety about it, as it will initially increase

my

> cleft, not decrease it. I am hopeful to hear from others who have

> been through this.

>

> I know in the end it will all be worth it but the process is SO

> arduous. I have a great husband, a fantastic job, and two fabulous

> kids with special needs. I felt this was something I needed to do

and

> am excited about it but scared at the same time. Too bad we cannot

> all just float away to a desert island while this is being done

and

> come back complete! I have great friends who support me and all,

but

> none of them can truly understand what having facial anomalies is

> like. It goes way beyond simply not feeling attractive, like those

> people on the reality shows. Please! We should have our own

reality

> show.

>

> Anyway, I would very much like to hear from fellow cleft palate

> patients. You can e-mail me privately or post to the board, I will

be

> reading messages.

>

> Best of luck to all,

> Suzanne

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