choanal repair

[Guest guest]

Hi Everyone,

We are scheduled to finally do choanal repair in a couple weeks. I'm

beginning to second guess.....do we REALLY need to do this. I think

I'm just getting scared as it's looming closer.

is 5 1/2 and is totally blocked on just one side. But it

doesn't seem to cause a lot of problems that we're aware of. He's non-

verbal so he can't tell us. The CT shows chronic sinisitus which can't

feel good.

Anyway...I'm just curious, did any of you out there wait to do repair

later???? It's going to be transpalatal.

Thanks!

Theresa Troupe

[Guest guest]

if tis not coursing probs then i say not nesasary but if is then you have to

>

> Hi Everyone,

>

> We are scheduled to finally do choanal repair in a couple weeks. I'm

> beginning to second guess.....do we REALLY need to do this. I think

> I'm just getting scared as it's looming closer.

>

> is 5 1/2 and is totally blocked on just one side. But it

> doesn't seem to cause a lot of problems that we're aware of. He's non-

> verbal so he can't tell us. The CT shows chronic sinisitus which can't

> feel good.

>

> Anyway...I'm just curious, did any of you out there wait to do repair

> later???? It's going to be transpalatal.

>

> Thanks!

>

> Theresa Troupe

>

>

>

[Guest guest]

Hi. My son had bilateral, bony choanal atresia and

had the transpalatal repair when he was 1 month old.

Our ENT (who we love and really respect) told us that

he would not have done a repair if Vinny (our son)

only had the choanal atresia on one side. He said all

you need is one side for breathing. Though Vinny now

has 2 openings, he still does not breathe through his

nose, only out through his nose. While the holes are

there due to the repair, they are not really all that

functional. Also , they continually close up with

scar tissue. Regardless, he forever has a stuffy,

runny nose.

This may or may not be what you wanted to hear, but

that is what we have learned along the way. By the

way, our ENT is the pediatric guru and has worked with

many children with CHARGE over the years.

ina, mom to Luca (3.5) & Vinny (1.5 w/ cHARgE)

--- ourgiftmjt wrote:

> Hi Everyone,

>

> We are scheduled to finally do choanal repair in a

> couple weeks. I'm

> beginning to second guess.....do we REALLY need to

> do this. I think

> I'm just getting scared as it's looming closer.

>

> is 5 1/2 and is totally blocked on just one

> side. But it

> doesn't seem to cause a lot of problems that we're

> aware of. He's non-

> verbal so he can't tell us. The CT shows chronic

> sinisitus which can't

> feel good.

>

> Anyway...I'm just curious, did any of you out there

> wait to do repair

> later???? It's going to be transpalatal.

>

> Thanks!

>

> Theresa Troupe

>

>

>

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[Guest guest]

ufortunately, coanal atresia is very common w/CHARGE, and the average

reapirs is 4.5 times. as your child gets bigger the bones get bigger and it

stays

open. someitmes it is just scar tissue. i also thnk that they have learned

alot more over the years. our daughter had it done 7 times. we also were

told you only need one side to breath. However, keep in mind breathing

problems, swallowing problems are all quite common w/CHARGE. Having teh nose

open

will help with all of this. Our dauighter had to be trached for 8 years due

to breathing and wallowing problems. She also had to learn to breath through

her nose. This took some time. Also, with many surgeries having an open

airway can be quite positive.

Cathie, Mom to 11 yr CHARGEr