Re: Hi I'm new - any advice?

[Guest guest]

Welcome to the group!

I'm sorry to hear about your daughter's synostosis diagnosis. With

that diagnosis, I have always thought that surgery was the only

option for correction ? Or am I mistaken?

I've heard of many post-op craniosynostosis babies wearning bands

for further headshape correction, but w/premature fusion of skull

bones, the bands won't be able to provide correction normally.

What have your Drs said about this? What about the people at Cranial

Technologies? Visit http://www.cappskids.org for more info too.

HTH. Good luck.

Debbie

>

> Our pediatrician sent us to the neorosurgeon at Phx Childrens

after we

> tried repositioning and it didn't get any better. The neorsurgeon

did

> a CT and found our daughter has a moderate case of Metopic

Synostosis

> (Premature fusion of the bone that runs down the forehead). This

has

> cause brachycephaly to wear her head is almost as wide in the back

as

> it is long. Our pediatrician referred us to Hanger and the

> neorosurgeon referred us to Cranial Tech (at Phx Childrens). The

> neorosurgeon is hoping that the helmet will help to avoid

surgery. We

> have gone to both consultations and are waiting to hear back from

the

> insurance but we already know that Cranial Tech is not in nework

so we

> will end up paying about half if approved. I felt more

comfortable

> with Cranial Tech. My daughter just turned 8 months and so I am

> trying to decide what I am going to do if the insurance approves

or

> denies us so that we can go ahead ASAP. Does anyone have

experience

> with either Hanger or Cranial Tech in Arizona? Has anyone had a

child

> in a similar situation?

>

[Guest guest]

Thanks!

Our neorosurgeon wants to see us back every 6 weeks to check on

her. Since her case is only moderate I don't think it has healed

all the way and she doesn't have the triangulation just a small

forhead. The neorosurgeon said she may still need surgery but was

trying to hold off and see if the helmet will force her head to grow

normal in the front. I liked cranial tech because they are on the

Phx Children's hospital campus and so is our neorosurgeon. Our

neorosurgeon also referred me to the www.cappskids.org website. I

do have the concern that if we go to Cranial tech and pay the larger

amount then what if she still needs surgery and then also another

band. Cranial Tech also understood what my neorosurgeon was doing

but they said eventually she may need the surgery.

-Chandra

> >

> > Our pediatrician sent us to the neorosurgeon at Phx Childrens

> after we

> > tried repositioning and it didn't get any better. The

neorsurgeon

> did

> > a CT and found our daughter has a moderate case of Metopic

> Synostosis

> > (Premature fusion of the bone that runs down the forehead).

This

> has

> > cause brachycephaly to wear her head is almost as wide in the

back

> as

> > it is long. Our pediatrician referred us to Hanger and the

> > neorosurgeon referred us to Cranial Tech (at Phx Childrens).

The

> > neorosurgeon is hoping that the helmet will help to avoid

> surgery. We

> > have gone to both consultations and are waiting to hear back

from

> the

> > insurance but we already know that Cranial Tech is not in nework

> so we

> > will end up paying about half if approved. I felt more

> comfortable

> > with Cranial Tech. My daughter just turned 8 months and so I am

> > trying to decide what I am going to do if the insurance approves

> or

> > denies us so that we can go ahead ASAP. Does anyone have

> experience

> > with either Hanger or Cranial Tech in Arizona? Has anyone had a

> child

> > in a similar situation?

> >

>

[Guest guest]

I have heard very good things about cranial tech in AZ, but don't

remember anything about that Hanger location. I guess in your case

the neuro thinks the premature fusion is causing a misshapen head,

but not restricting brain growth, so surgury is not necessarily

needed (at least that is what it sounds like to me). If you got a

better feeling at cranial tech, I would probably go with that.

-christine

sydney 2 yrs starband grad

> > >

> > > Our pediatrician sent us to the neorosurgeon at Phx Childrens

> > after we

> > > tried repositioning and it didn't get any better. The

> neorsurgeon

> > did

> > > a CT and found our daughter has a moderate case of Metopic

> > Synostosis

> > > (Premature fusion of the bone that runs down the forehead).

> This

> > has

> > > cause brachycephaly to wear her head is almost as wide in the

> back

> > as

> > > it is long. Our pediatrician referred us to Hanger and the

> > > neorosurgeon referred us to Cranial Tech (at Phx Childrens).

> The

> > > neorosurgeon is hoping that the helmet will help to avoid

> > surgery. We

> > > have gone to both consultations and are waiting to hear back

> from

> > the

> > > insurance but we already know that Cranial Tech is not in

nework

> > so we

> > > will end up paying about half if approved. I felt more

> > comfortable

> > > with Cranial Tech. My daughter just turned 8 months and so I

am

> > > trying to decide what I am going to do if the insurance

approves

> > or

> > > denies us so that we can go ahead ASAP. Does anyone have

> > experience

> > > with either Hanger or Cranial Tech in Arizona? Has anyone had

a

> > child

> > > in a similar situation?

> > >

> >

>

[Guest guest]

We went to the Cranial Tech in AZ and had a wonderful experience

there. It was after our son graduated that I met someone that went

to Hanger. They said they got good results although I never saw

those results. Also, the Hanger was a lot closer to our house but

that is not where our pediatrician referred us (which I thought was

interesting). I can highly recommend CT...we met almost the entire

staff and they all seemed very knowledgeable. I would also go with

who your neurosurgeon is referring you to as that may come in handy

if your little one does end up needing surgery. Good luck in your

decision.

PS: Not that this is what your decision should be based on but this

CT now has the scanner and no longer does casting. Our son was

casted but when I went back a few months later (as I feared

regression...which he had NOT) they had just gotten the scanner.

This was approx. 7 months ago that they got the scanner.

> > > >

> > > > Our pediatrician sent us to the neorosurgeon at Phx

Childrens

> > > after we

> > > > tried repositioning and it didn't get any better. The

> > neorsurgeon

> > > did

> > > > a CT and found our daughter has a moderate case of Metopic

> > > Synostosis

> > > > (Premature fusion of the bone that runs down the forehead).

> > This

> > > has

> > > > cause brachycephaly to wear her head is almost as wide in

the

> > back

> > > as

> > > > it is long. Our pediatrician referred us to Hanger and the

> > > > neorosurgeon referred us to Cranial Tech (at Phx

Childrens).

> > The

> > > > neorosurgeon is hoping that the helmet will help to avoid

> > > surgery. We

> > > > have gone to both consultations and are waiting to hear back

> > from

> > > the

> > > > insurance but we already know that Cranial Tech is not in

> nework

> > > so we

> > > > will end up paying about half if approved. I felt more

> > > comfortable

> > > > with Cranial Tech. My daughter just turned 8 months and so

I

> am

> > > > trying to decide what I am going to do if the insurance

> approves

> > > or

> > > > denies us so that we can go ahead ASAP. Does anyone have

> > > experience

> > > > with either Hanger or Cranial Tech in Arizona? Has anyone

had

> a

> > > child

> > > > in a similar situation?

> > > >

> > >

> >

>

[Guest guest]

Our insurance just denied us even with the neosurgeon recommending

this and that it could prevent surgery. I have read alot of

different things about appealing and dealing with insurance. Has

anyone had success with BCBS in AZ? I am still not sure who to go

with. Hanger will give us the insurance discount so it would be

$1680 and CT will give us $300 off if we pay all up front so $3000.

That is quite a price difference but I just want her to have the

best chance at correcting her head shape.

-Chandra

> > > > >

> > > > > Our pediatrician sent us to the neorosurgeon at Phx

> Childrens

> > > > after we

> > > > > tried repositioning and it didn't get any better. The

> > > neorsurgeon

> > > > did

> > > > > a CT and found our daughter has a moderate case of Metopic

> > > > Synostosis

> > > > > (Premature fusion of the bone that runs down the

forehead).

> > > This

> > > > has

> > > > > cause brachycephaly to wear her head is almost as wide in

> the

> > > back

> > > > as

> > > > > it is long. Our pediatrician referred us to Hanger and

the

> > > > > neorosurgeon referred us to Cranial Tech (at Phx

> Childrens).

> > > The

> > > > > neorosurgeon is hoping that the helmet will help to avoid

> > > > surgery. We

> > > > > have gone to both consultations and are waiting to hear

back

> > > from

> > > > the

> > > > > insurance but we already know that Cranial Tech is not in

> > nework

> > > > so we

> > > > > will end up paying about half if approved. I felt more

> > > > comfortable

> > > > > with Cranial Tech. My daughter just turned 8 months and

so

> I

> > am

> > > > > trying to decide what I am going to do if the insurance

> > approves

> > > > or

> > > > > denies us so that we can go ahead ASAP. Does anyone have

> > > > experience

> > > > > with either Hanger or Cranial Tech in Arizona? Has anyone

> had

> > a

> > > > child

> > > > > in a similar situation?

> > > > >

> > > >

> > >

> >

>