Re: CT scan results not good

January 30, 2006

,

I'm so sorry to hear that. Thank God you got the CT scan.

If you haven't checked out CAPPS, it's a great organization.

http://www.cappskids.org/

Good luck at the neurosurgeon 3/9. Let us know how she does.

>

> I just wanted to let you all know that 's CT scan results

came back positive for craniosynostosis. It looks like we'll be

gearing up for surgery instead of just a band. We have an appt with

the neurosurgeon on March 9.

>

> &

>

January 30, 2006

,

I'm so sorry to hear that. Thank God you got the CT scan.

If you haven't checked out CAPPS, it's a great organization.

http://www.cappskids.org/

Good luck at the neurosurgeon 3/9. Let us know how she does.

>

> I just wanted to let you all know that 's CT scan results

came back positive for craniosynostosis. It looks like we'll be

gearing up for surgery instead of just a band. We have an appt with

the neurosurgeon on March 9.

>

> &

>

January 30, 2006

I'm sorry. Sending big hugs your way for a uncomplicated surgery.

Natasha

>

> I just wanted to let you all know that 's CT scan results came

back positive for craniosynostosis. It looks like we'll be gearing up

for surgery instead of just a band. We have an appt with the

neurosurgeon on March 9.

>

> &

>

January 30, 2006

I'm sorry. Sending big hugs your way for a uncomplicated surgery.

Natasha

>

> I just wanted to let you all know that 's CT scan results came

back positive for craniosynostosis. It looks like we'll be gearing up

for surgery instead of just a band. We have an appt with the

neurosurgeon on March 9.

>

> &

>

January 30, 2006

Hi, I just wanted to let you know that I am saying a prayer for your

family, and though it may be hard to see right now, things will get

better and this will be just a memory one day. Remember even in rough

times God is still good so don't forget to count your blessings.

godsgirl

>

> I just wanted to let you all know that 's CT scan results came

back positive for craniosynostosis. It looks like we'll be gearing up

for surgery instead of just a band. We have an appt with the

neurosurgeon on March 9.

>

> &

>

January 30, 2006

Hi, I just wanted to let you know that I am saying a prayer for your

family, and though it may be hard to see right now, things will get

better and this will be just a memory one day. Remember even in rough

times God is still good so don't forget to count your blessings.

godsgirl

>

> I just wanted to let you all know that 's CT scan results came

back positive for craniosynostosis. It looks like we'll be gearing up

for surgery instead of just a band. We have an appt with the

neurosurgeon on March 9.

>

> &

>

January 30, 2006

-

You and are in my thoughts and prayers- keep us updated.

Best wishes,

Terry

--- In Plagiocephaly , " Osburn " <sosburn@e...>

wrote:

>

> I just wanted to let you all know that 's CT scan results came

back positive for craniosynostosis. It looks like we'll be gearing up

for surgery instead of just a band. We have an appt with the

neurosurgeon on March 9.

>

> &

>

January 30, 2006

-

You and are in my thoughts and prayers- keep us updated.

Best wishes,

Terry

--- In Plagiocephaly , " Osburn " <sosburn@e...>

wrote:

>

> I just wanted to let you all know that 's CT scan results came

back positive for craniosynostosis. It looks like we'll be gearing up

for surgery instead of just a band. We have an appt with the

neurosurgeon on March 9.

>

> &

>

January 31, 2006

,

There is another board specifically for craniosyntosis, you might

want to join that one as well as keeping everyone here up to date.

CranioandParentsSupport/?

yguid=69016158

Best of luck,

Amy Posner

mom to Ben, DOC grad 11/16

>

> I just wanted to let you all know that 's CT scan results

came back positive for craniosynostosis. It looks like we'll be

gearing up for surgery instead of just a band. We have an appt with

the neurosurgeon on March 9.

>

> &

>

January 31, 2006

,

There is another board specifically for craniosyntosis, you might

want to join that one as well as keeping everyone here up to date.

CranioandParentsSupport/?

yguid=69016158

Best of luck,

Amy Posner

mom to Ben, DOC grad 11/16

>

> I just wanted to let you all know that 's CT scan results

came back positive for craniosynostosis. It looks like we'll be

gearing up for surgery instead of just a band. We have an appt with

the neurosurgeon on March 9.

>

> &

>

January 31, 2006

,

I'm so sorry to hear this. I'll pray for a sucessful surgery and

speedy recovery. Is young enough to get the " easier " of the 2

operations? I think the " easy " surgery does less cutting and is lest

invasive. Sorry I can't be any more helpful than that. The CAPPS

website is great for info and support. Not that I want you to leave.

Feel free to stick around. We are happy to support you and

during her surgery and possible subsequent banding.

{{{BIG HUGS}}} to your whole family.

na, 2 1/2, DOC Grad Feb 04, Tort Resolved

Kiersten, 8 months, DOC 1/10/06, Tort

www.thefilyaws.com

>

> I just wanted to let you all know that 's CT scan results came

back positive for craniosynostosis. It looks like we'll be gearing up

for surgery instead of just a band. We have an appt with the

neurosurgeon on March 9.

>

> &

>

January 31, 2006

,

I'm so sorry to hear this. I'll pray for a sucessful surgery and

speedy recovery. Is young enough to get the " easier " of the 2

operations? I think the " easy " surgery does less cutting and is lest

invasive. Sorry I can't be any more helpful than that. The CAPPS

website is great for info and support. Not that I want you to leave.

Feel free to stick around. We are happy to support you and

during her surgery and possible subsequent banding.

{{{BIG HUGS}}} to your whole family.

na, 2 1/2, DOC Grad Feb 04, Tort Resolved

Kiersten, 8 months, DOC 1/10/06, Tort

www.thefilyaws.com

>

> I just wanted to let you all know that 's CT scan results came

back positive for craniosynostosis. It looks like we'll be gearing up

for surgery instead of just a band. We have an appt with the

neurosurgeon on March 9.

>

> &

>

January 31, 2006

Thanks, . is only 3 months old, so all the possibilities are open to us. I have no idea what our surgeon does, though, since we haven't seen him yet. I do plan on sticking around here. One of the sutures that looks to be fused is her left lambdoid, and from all that I've read that will probably require banding after the fact. So, I'm sure I'll be posting cute little DOC band pics here at some point.

&

Re: CT scan results not good

,I'm so sorry to hear this. I'll pray for a sucessful surgery and speedy recovery. Is young enough to get the "easier" of the 2 operations? I think the "easy" surgery does less cutting and is lest invasive. Sorry I can't be any more helpful than that. The CAPPS website is great for info and support. Not that I want you to leave. Feel free to stick around. We are happy to support you and during her surgery and possible subsequent banding.{{{BIG HUGS}}} to your whole family.na, 2 1/2, DOC Grad Feb 04, Tort ResolvedKiersten, 8 months, DOC 1/10/06, Tortwww.thefilyaws.com>> I just wanted to let you all know that 's CT scan results came back positive for craniosynostosis. It looks like we'll be gearing up for surgery instead of just a band. We have an appt with the neurosurgeon on March 9.> > & >

January 31, 2006

Thanks, . is only 3 months old, so all the possibilities are open to us. I have no idea what our surgeon does, though, since we haven't seen him yet. I do plan on sticking around here. One of the sutures that looks to be fused is her left lambdoid, and from all that I've read that will probably require banding after the fact. So, I'm sure I'll be posting cute little DOC band pics here at some point.

&

Re: CT scan results not good

,I'm so sorry to hear this. I'll pray for a sucessful surgery and speedy recovery. Is young enough to get the "easier" of the 2 operations? I think the "easy" surgery does less cutting and is lest invasive. Sorry I can't be any more helpful than that. The CAPPS website is great for info and support. Not that I want you to leave. Feel free to stick around. We are happy to support you and during her surgery and possible subsequent banding.{{{BIG HUGS}}} to your whole family.na, 2 1/2, DOC Grad Feb 04, Tort ResolvedKiersten, 8 months, DOC 1/10/06, Tortwww.thefilyaws.com>> I just wanted to let you all know that 's CT scan results came back positive for craniosynostosis. It looks like we'll be gearing up for surgery instead of just a band. We have an appt with the neurosurgeon on March 9.> > & >

January 31, 2006

I'm so sorry to heat that. Please keep us posted.

Jen

(almost 18 mo), Hanger Band Grad

(4 years)

--- In Plagiocephaly , " Osburn " <sosburn@e...>

wrote:

>

> I just wanted to let you all know that 's CT scan results came

back positive for craniosynostosis. It looks like we'll be gearing up

for surgery instead of just a band. We have an appt with the

neurosurgeon on March 9.

>

> &

>

January 31, 2006

I'm so sorry to heat that. Please keep us posted.

Jen

(almost 18 mo), Hanger Band Grad

(4 years)

--- In Plagiocephaly , " Osburn " <sosburn@e...>

wrote:

>

> I just wanted to let you all know that 's CT scan results came

back positive for craniosynostosis. It looks like we'll be gearing up

for surgery instead of just a band. We have an appt with the

neurosurgeon on March 9.

>

> &

>

January 31, 2006

,

How are you doing today? Just wanted to let you know I'm thinking

about you and Clarie.

Take care,

-- In Plagiocephaly , " Osburn " <sosburn@e...>

wrote:

>

> I just wanted to let you all know that 's CT scan results came

back positive for craniosynostosis. It looks like we'll be gearing up

for surgery instead of just a band. We have an appt with the

neurosurgeon on March 9.

>

> &

>

January 31, 2006

,

How are you doing today? Just wanted to let you know I'm thinking

about you and Clarie.

Take care,

-- In Plagiocephaly , " Osburn " <sosburn@e...>

wrote:

>

> I just wanted to let you all know that 's CT scan results came

back positive for craniosynostosis. It looks like we'll be gearing up

for surgery instead of just a band. We have an appt with the

neurosurgeon on March 9.

>

> &

>

January 31, 2006

Thanks, . I'm OK. I tried to get an earlier appt for today, but they are full until then. She did tell me to call on Tuesdays and Thursdays to see if there have been any cancellations. She also told me that I could talk to my ped and that if my ped thinks it's warranted she can call the neuro and ask that they work her in due to severity. I'll try that tomorrow as well. And you better believe that every Tues and Thurs I will be calling! Overall, I'm OK, I guess. Thanks for asking.

&

Re: CT scan results not good

,How are you doing today? Just wanted to let you know I'm thinkingabout you and Clarie. Take care,-- In Plagiocephaly , " Osburn" <sosburn@e...>wrote:>> I just wanted to let you all know that 's CT scan results cameback positive for craniosynostosis. It looks like we'll be gearing upfor surgery instead of just a band. We have an appt with theneurosurgeon on March 9.> > & >

January 31, 2006

Thanks, . I'm OK. I tried to get an earlier appt for today, but they are full until then. She did tell me to call on Tuesdays and Thursdays to see if there have been any cancellations. She also told me that I could talk to my ped and that if my ped thinks it's warranted she can call the neuro and ask that they work her in due to severity. I'll try that tomorrow as well. And you better believe that every Tues and Thurs I will be calling! Overall, I'm OK, I guess. Thanks for asking.

&

Re: CT scan results not good

,How are you doing today? Just wanted to let you know I'm thinkingabout you and Clarie. Take care,-- In Plagiocephaly , " Osburn" <sosburn@e...>wrote:>> I just wanted to let you all know that 's CT scan results cameback positive for craniosynostosis. It looks like we'll be gearing upfor surgery instead of just a band. We have an appt with theneurosurgeon on March 9.> > & >

February 1, 2006

I don't know how old Clare is, but in my experience, generally the surgery

is done between 4-8 months of age and typically closer to the 8 month mark.

But I don't know why.

Re: CT scan results not good

Hi ,

I would think that since they think there is more than one suture fused

they'd get you in earlier. I hope your ped can help, let us know how you

make out. Good luck.

> >

> > I just wanted to let you all know that 's CT scan results came

> back positive for craniosynostosis. It looks like we'll be gearing up

> for surgery instead of just a band. We have an appt with the

> neurosurgeon on March 9.

> >

> > &

> >

>

> For more plagio info

February 1, 2006

I don't know how old Clare is, but in my experience, generally the surgery

is done between 4-8 months of age and typically closer to the 8 month mark.

But I don't know why.

Re: CT scan results not good

Hi ,

I would think that since they think there is more than one suture fused

they'd get you in earlier. I hope your ped can help, let us know how you

make out. Good luck.

> >

> > I just wanted to let you all know that 's CT scan results came

> back positive for craniosynostosis. It looks like we'll be gearing up

> for surgery instead of just a band. We have an appt with the

> neurosurgeon on March 9.

> >

> > &

> >

>

> For more plagio info

February 2, 2006

I haven't posted in a long time. My daughter had scaphy at birth. By 3

mo, her pediatricians thought it was cranio.

I know it is stressful, but your attitude is great. At the

plastic/neuro surgeons office, after seeing all of the kids with

serious facial syndromes I was grateful that we were just dealing with

an easily corrected problem.

I am sure you know this by now, but the only reason to " rush " into the

surgeon (from a medical standpoint) is if is pushing 6 mo. They

don't worry about brain development until the child is over 1, so as

long as the surgery is done before then, there isn't a rush.

The less invasive surgery is only done on the youngest kids. After 6

mo, they do the " big " surgery. While the first is less of an ordeal in

the OR, the effort in recovery can be greater (you wear a helmet with

bi-weekly checks) The more serious surgery LOOKS awful, but when you

are done, you are usually done, which has benefits. I think there are

pros and cons both ways, but whichever route, in 6 mo it will just be a

memory and will be great.

One thing- if you don't live in a MAJOR city, you might find that your

local surgeon doesn't do the orthoscopic procedure EVEN THOUGH your

child qualifies for the protocal by age. This was our experience in

Oklahoma City. In that case, get a second opinion. Blythe was 3.5 mo

and the OKC doctor was in no rush to see us whereas we felt like time

was running out if we wanted to do the orthoscopic procedure. It was

frustrating.

We went to Dallas (Dr Craig Hobar at Childrens) for the second opinion

and, in the end, would have opted for the less-invasive surgery, even

though the post-op care would have required a lot of travelling. It is

important that craniosynostosis is a BIG part of the surgeons practice,

not that something they see as a interesting side-bar to a plastic

surgery/neuro practice. I thing the surgeon in Dallas did more cranio

surgeries a month than the surgeon on Oklahoma did a year. This isn't

to bash the doctor in OKC who I think was a committed surgeon. It is

just a rare condition and a small state.

Take care.

--- In Plagiocephaly , " Osburn " <sosburn@...>

wrote:

>

> I just wanted to let you all know that 's CT scan results came

back positive for craniosynostosis. It looks like we'll be gearing up

for surgery instead of just a band. We have an appt with the

neurosurgeon on March 9.

>

> &

>

February 2, 2006