For cleft palate patient up for surgical repair

[Guest guest]

Hello, honey. And no, nothing is gross that's a result of what

nature gives us, or at least is a way we find to cope with what

nature gives us.

I can't answer your questions.

Yes, there have been reports that the healing donor site in a hip

graft is more painful than the jaw surgery (which usually is not

painful, because numbness sets in, and the docs are really good with

their meds). I do not know anything about the long needle procedure,

but I do believe that you should be able to ask your doc, and ask

for conversation with his earlier patients about this stuff. Ask for

ones with whom this has gone well, and others for whom it's been

problematic.

There is also at least one site for persons who have issues

involving cleft palates. I'm hoping that there's one in either the

files or the links here -- I remember at least one mom whose child

had surgery, but it was a few years ago. (OK. I'm suffering from a

bit of old-age-brain-freeze. Sorry.)

If you can't find it that way, maybe someone will remember, or maybe

you can find it by googling cleft palate.

Please ask your surgeon, as candidly as you've asked us, what you

should expect. He/she should have some answers for you, or at least

be willing to address your concerns with information!

Best wishes to you!

Cammie

> Hi! I'm new to this group - but I have a surgery date planned for

> June 9th in NYC with Dr. Court Cutting. I'm 27 yrs old and was

born

> with a unilateral cleft lip and palate. Unfortunately I did not

> receive a bone graft earlier - and the soft tissue repair of my

palate

> began to open up a few years ago. Now I have an oral-nasal

fistula -

> which was my original concern for going to the doctor since food

gets

> trapped up there and causes infection. Imagine my surprise when I

> went into the office for the first time and he concentrated on my

> maxillary deficiency! Now I'm scheduled to have three procedures

done

> at the same time. First a segmental advancement - to help close

the

> bone deficiency created by the cleft palate. Then a LeFortI of my

> upper jaw - only 5-8mm - which they say shouldn't be that bad.

Then a

> bone graft to fill in the gap. The only concern is that with all

the

> other procedures, the bone graft may not have a good enough blood

> supply to survive - so I may have to have another one. Has anyone

> been through a similar situation?

>

> He also told me that for healing of the bone graft I shouldn't use

a

> straw or change the pressure between my mouth and nose (for fear

that

> I would create a new whole in the graft). What I realize now is

that

> I'm constantly " sucking " through the fistula to get rid of food or

> snot (sorry it's gross) because I dislike when it gets stuffed

up. Is

> it possible that I will do this after surgery without thinking?

Could

> this ruin the bone graft? And will it constantly feel like

something

> is just " stuffed " in there? I'm also afraid that I've begun to use

> the fistula as an alternative breathing source. My left nostril

has a

> lot of scar tissue and only work about 10%. I typically breathe

> through my mouth and subsequently the fistula. Am I going to feel

> like I'm not getting enough air?

>

> He also plans to take the bone graft from my hip - but he is able

to

> use a " long needle " techique which is supposed to be less invasive

and

> speed healing. I heard the old way was usually the most painful

part

> of recovery. Does anyone have any experience?

>

> I would be most appreciative of any support or personal stories to

> help ease my mind. Even though I've had numerous surgeries

before -

> as this one approaches my anxiety level has begun to soar. They

also

> removed a tooth near the cleft area - so I'm currently walking

around

> the city toothless - not very Sara . I just can't

wait

> for it to be over. *sigh*

>

> Thanks in advance!

[Guest guest]

I'm not sure how much clicking you would need to get to it, but if

you go to www.merribuck.com , my friend has a child with a cleft

palate and thus she is very active in the related webrings and

support groups. If you don't find anything through her site, contact

her and I'm sure she can put you in touch with someone who could help!

Kate

> > Hi! I'm new to this group - but I have a surgery date planned for

> > June 9th in NYC with Dr. Court Cutting. I'm 27 yrs old and was

> born

> > with a unilateral cleft lip and palate. Unfortunately I did not

> > receive a bone graft earlier - and the soft tissue repair of my

> palate

> > began to open up a few years ago. Now I have an oral-nasal

> fistula -

> > which was my original concern for going to the doctor since food

> gets

> > trapped up there and causes infection. Imagine my surprise when I

> > went into the office for the first time and he concentrated on my

> > maxillary deficiency! Now I'm scheduled to have three procedures

> done

> > at the same time. First a segmental advancement - to help close

> the

> > bone deficiency created by the cleft palate. Then a LeFortI of my

> > upper jaw - only 5-8mm - which they say shouldn't be that bad.

> Then a

> > bone graft to fill in the gap. The only concern is that with all

> the

> > other procedures, the bone graft may not have a good enough blood

> > supply to survive - so I may have to have another one. Has anyone

> > been through a similar situation?

> >

> > He also told me that for healing of the bone graft I shouldn't

use

> a

> > straw or change the pressure between my mouth and nose (for fear

> that

> > I would create a new whole in the graft). What I realize now is

> that

> > I'm constantly " sucking " through the fistula to get rid of food or

> > snot (sorry it's gross) because I dislike when it gets stuffed

> up. Is

> > it possible that I will do this after surgery without thinking?

> Could

> > this ruin the bone graft? And will it constantly feel like

> something

> > is just " stuffed " in there? I'm also afraid that I've begun to

use

> > the fistula as an alternative breathing source. My left nostril

> has a

> > lot of scar tissue and only work about 10%. I typically breathe

> > through my mouth and subsequently the fistula. Am I going to feel

> > like I'm not getting enough air?

> >

> > He also plans to take the bone graft from my hip - but he is able

> to

> > use a " long needle " techique which is supposed to be less

invasive

> and

> > speed healing. I heard the old way was usually the most painful

> part

> > of recovery. Does anyone have any experience?

> >

> > I would be most appreciative of any support or personal stories to

> > help ease my mind. Even though I've had numerous surgeries

> before -

> > as this one approaches my anxiety level has begun to soar. They

> also

> > removed a tooth near the cleft area - so I'm currently walking

> around

> > the city toothless - not very Sara . I just can't

> wait

> > for it to be over. *sigh*

> >

> > Thanks in advance!