RE: INFO ON GRETA'S HEAD--NEUROSURGEON

[Guest guest]

Dear Marcy:I know you are going through a lot of emotions right now. It's very common not to be able to see an open suture with the xray, which is why the MRI was scheduled (sometimes it's a CT scan instead). I also know that neurosurgeons are lousy at bedside manner - but the more you know about what is happening, the better you can communicate with him when you need to. There are lots of people here who will offer support to you. If you haven't already -- you might want to check out Crainosynostosis and Positional Plagiocephaly Support website -- it wouldn't hurt to check in there, and see if you can't talk to some one who has gone through similar experieinces. You do have to join (free) to access their message boards, but there is also a lot of information on the website, too, if you don't want to join.http://www.cappskids.org/Take care.T

racymom to Quinn, born 11/99, DOCband grad for scaphocephalic (long and narrow) headshape (Quinn had a CT scan at 3 weeks of age to rule out sattigal craniosynostosis).>------- Original Message ------->From : marcyeiseman[mailto:marcyeiseman@...]>Sent : 2/23/2008 6:13:40 PM>To : Plagiocephaly >Cc : >Subject : RE: INFO ON GRETA'S HEAD--NEUROSURGEON>>Well, some of you were wondering why Greta's head looked the way it did, with both sides looking flat. I dont have good news. Even though my pediatrician diagnosed her with plagio, my gut told me otherwise...SO, I made an appt with a neursurgeon...the neurosurgeon felt her head, kept feeling it, and feeling it, very silent. I was like, oh crap. I know what he is looking for. He said, I am going to send Greta down for an XRAY of her

skull. I asked, "why, you think that the bones are coming together too quickly?" he said, "yes, I cant feel a space in between the bones. I am not sure." My heart sank. She had the xray, and when he came back in after looking at it, he said,"I still cant tell." WHAT??!?!?!? So, then he says, "come back in 3 weeks, i want to give her an MRI...She cant have surgery until then anyway."OH MY GOSH. I cant even believe what I am hearing...Here I am hoping the guy tells me, yes, she has plagio, a weird case of it, and my worst nightmare came true.SO the reason her head looks like it does is because the bottom part of her skull, the occiput is prominant, or being pushed out from the pressure of her brain, and the bones pushing. I am praying he is somehow wrong, and that this next doctor will see a space!Please pray for her, I will keep everyone informed...marcyFor more plagio info, go to www.plagioc

ephaly.org/support

[Guest guest]

Marcy - I am so glad you listened to the voice inside of you! I hope and pray that she does not have cranio - but if she does - it sounds like you are a strong mommy who can handle and help the little blessing that you have!!!

Please keep us updated!!!

Jen and Luli - 26 months

Left tort - Right Plagio - Hanger Band Grad - CA

http://www.babiesonline.com/babies/j/jens5th/

INFO ON GRETA'S HEAD--NEUROSURGEON

Well, some of you were wondering why Greta's head looked the way it

did, with both sides looking flat. I dont have good news. Even though

my pediatrician diagnosed her with plagio, my gut told me

otherwise...SO, I made an appt with a neursurgeon...the neurosurgeon

felt her head, kept feeling it, and feeling it, very silent. I was

like, oh crap. I know what he is looking for. He said, I am going to

send Greta down for an XRAY of her skull. I asked, "why, you think

that the bones are coming together too quickly?" he said, "yes, I

cant feel a space in between the bones. I am not sure." My heart

sank.

She had the xray, and when he came back in after looking at it, he

said,"I still cant tell."

WHAT??!?!?!? So, then he says, "come back in 3 weeks, i want to give

her an MRI...She cant have surgery until then anyway."

OH MY GOSH. I cant even believe what I am hearing...Here I am hoping

the guy tells me, yes, she has plagio, a weird case of it, and my

worst nightmare came true.

SO the reason her head looks like it does is because the bottom part

of her skull, the occiput is prominant, or being pushed out from the

pressure of her brain, and the bones pushing. I am praying he is

somehow wrong, and that this next doctor will see a space!

Please pray for her, I will keep everyone informed...marcy

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[Guest guest]

Hey EVERYONE! I just wanted to thank everyone who is keeping Miss Greta in their prayers...I am so glad I have found this group! I will be in touch this week to let everyone know how she is doing and what our next step is!

~marcy

INFO ON GRETA'S HEAD--NEUROSURGEON

Well, some of you were wondering why Greta's head looked the way it did, with both sides looking flat. I dont have good news. Even though my pediatrician diagnosed her with plagio, my gut told me otherwise... SO, I made an appt with a neursurgeon. ..the neurosurgeon felt her head, kept feeling it, and feeling it, very silent. I was like, oh crap. I know what he is looking for. He said, I am going to send Greta down for an XRAY of her skull. I asked, "why, you think that the bones are coming together too quickly?" he said, "yes, I cant feel a space in between the bones. I am not sure." My heart sank. She had the xray, and when he came back in after looking at it, he said,"I still cant tell." WHAT??!?!?!? So, then he says, "come back in 3 weeks, i want to give her an MRI...She cant have surgery until then anyway."OH MY GOSH. I cant even believe what I am hearing...Here I am hoping the guy

tells me, yes, she has plagio, a weird case of it, and my worst nightmare came true.SO the reason her head looks like it does is because the bottom part of her skull, the occiput is prominant, or being pushed out from the pressure of her brain, and the bones pushing. I am praying he is somehow wrong, and that this next doctor will see a space!Please pray for her, I will keep everyone informed...marcy

More new features than ever. Check out the new AOL Mail!

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[Guest guest]

I am so sorry that you are going through

this. It must be so worrisome!

I assume the doctor had a good feel of

Greta’s fontanelle (soft spot)? The way our neurosurgeon explained it,

as long as the soft spot is still soft and slightly concave, then there is not

undue pressure on the brain. You could have a feel yourself and monitor for

any changes – and call the doctor if it gets firmer. I was also told

that any pressure on the brain would make for a very, very fussy baby with a

bad headache, so you could monitor for that as well.

I’ll be thinking of you and Greta.

Keep us posted.

From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of marcyeiseman

Sent: Sunday, February 24, 2008

10:14 AM

Plagiocephaly

Subject: INFO ON GRETA'S

HEAD--NEUROSURGEON

Well, some of you were wondering why Greta's head

looked the way it

did, with both sides looking flat. I dont have good news. Even though

my pediatrician diagnosed her with plagio, my gut told me

otherwise...SO, I made an appt with a neursurgeon...the neurosurgeon

felt her head, kept feeling it, and feeling it, very silent. I was

like, oh crap. I know what he is looking for. He said, I am going to

send Greta down for an XRAY of her skull. I asked, " why, you think

that the bones are coming together too quickly? " he said, " yes, I

cant feel a space in between the bones. I am not sure. " My heart

sank.

She had the xray, and when he came back in after looking at it, he

said, " I still cant tell. "

WHAT??!?!?!? So, then he says, " come back in 3 weeks, i want to give

her an MRI...She cant have surgery until then anyway. "

OH MY GOSH. I cant even believe what I am hearing...Here I am hoping

the guy tells me, yes, she has plagio, a weird case of it, and my

worst nightmare came true.

SO the reason her head looks like it does is because the bottom part

of her skull, the occiput is prominant, or being pushed out from the

pressure of her brain, and the bones pushing. I am praying he is

somehow wrong, and that this next doctor will see a space!

Please pray for her, I will keep everyone informed...marcy

[Guest guest]

Hi again Marcy-

I just wanted to throw something in, I'm not sure if an MRI is

similar enough to a CT scan to do this. But my son Jake was referred

for a CT at 12 weeks, and the idea was that he was going to be

sedated and therefore had to fast for a certain number of hours

before hand. I think I had to wake him up and give him a bottle at

like 2:30 am as his " last meal. " Anyway, when we got there, the

tecnician said they would try once to get the scan without sedation

and then if they couldn't, they'd have to sedate him. They tried it

and were able to get the scan on that first try, so no sedation was

needed. I was so relieved. So maybe if you could at least suggest

that they try once without sedation to see if they can get the scan,

they might give it a go. It's worth asking anyway. (Although now

that I think about it, the MRI is the one that you have to be really

still for, right? The CT was just a scan of the head, and Jake's

head was braced and strapped in place, so it was just a matter of me

holding his arms and legs still long enough for the scan. Anyway,

just in case you have the opportunity, I think it would still be

worth asking).

Again, good luck with everything.

Jake-17m (tort resolved/rt plagio/DocBand)

Jordan-4

>

> Hey EVERYONE! I just wanted to thank everyone who is keeping Miss

Greta in their prayers...I am so glad I have found this group! I

will be in touch this week to let everyone know how she is doing and

what our next step is!

> ~marcy

>

>

> INFO ON GRETA'S HEAD--NEUROSURGEON

>

>

> Well, some of you were wondering why Greta's head looked the way

it

> did, with both sides looking flat. I dont have good news. Even

though

> my pediatrician diagnosed her with plagio, my gut told me

> otherwise... SO, I made an appt with a neursurgeon. ..the

neurosurgeon

> felt her head, kept feeling it, and feeling it, very silent. I was

> like, oh crap. I know what he is looking for. He said, I am going

to

> send Greta down for an XRAY of her skull. I asked, " why, you think

> that the bones are coming together too quickly? " he said, " yes, I

> cant feel a space in between the bones. I am not sure. " My heart

> sank.

> She had the xray, and when he came back in after looking at it, he

> said, " I still cant tell. "

> WHAT??!?!?!? So, then he says, " come back in 3 weeks, i want to

give

> her an MRI...She cant have surgery until then anyway. "

> OH MY GOSH. I cant even believe what I am hearing...Here I am

hoping

> the guy tells me, yes, she has plagio, a weird case of it, and my

> worst nightmare came true.

>

> SO the reason her head looks like it does is because the bottom

part

> of her skull, the occiput is prominant, or being pushed out from

the

> pressure of her brain, and the bones pushing. I am praying he is

> somehow wrong, and that this next doctor will see a space!

>

> Please pray for her, I will keep everyone informed...marcy

>

>

>

>

> More new features than ever. Check out the new AOL Mail!

>

>

>

>

>

_____________________________________________________________________

_______________

> Never miss a thing. Make your home page.

> http://www./r/hs

>

[Guest guest]

OH thank you! I will be sure to ask! The last thing i would want to do is sedate her for no reason...I will ask if a ct scan is sufficient, so her head can be strapped and i can maybe hold her arms and legs...Thanks for the info!

INFO ON GRETA'S HEAD--NEUROSURGEON> > > Well, some of you were wondering why Greta's head looked the way it > did, with both sides looking flat. I dont have good news. Even though > my pediatrician diagnosed her with plagio, my gut told me > otherwise... SO, I made an appt with a neursurgeon. ..the neurosurgeon > felt her head, kept feeling it, and feeling it, very silent. I was > like, oh crap. I know what he is looking for. He said, I am going to > send Greta down for an XRAY of her skull. I asked, "why, you think > that the bones are coming together too quickly?" he said, "yes, I > cant feel a space in between the bones. I am not sure." My heart > sank. > She

had the xray, and when he came back in after looking at it, he > said,"I still cant tell." > WHAT??!?!?!? So, then he says, "come back in 3 weeks, i want to give > her an MRI...She cant have surgery until then anyway."> OH MY GOSH. I cant even believe what I am hearing...Here I am hoping > the guy tells me, yes, she has plagio, a weird case of it, and my > worst nightmare came true.> > SO the reason her head looks like it does is because the bottom part > of her skull, the occiput is prominant, or being pushed out from the > pressure of her brain, and the bones pushing. I am praying he is > somehow wrong, and that this next doctor will see a space!> > Please pray for her, I will keep everyone informed...marcy> > > > > More new features than ever. Check out the new AOL Mail!> > > >

> ____________ _________ _________ _________ _________ _________ _____________ ___> Never miss a thing. Make your home page. > http://www.. com/r/hs>

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[Guest guest]

Marcy,

brought up a good point. Usually children do not have to be sedated for head CT scans as they take only a few minutes. Usually holding the child down is sufficient. However, an MRI of the brain usually takes 45 minutes to an hour. The child has to be still the entire time which is difficult because the MRI machine is quite loud, and the room has to be kept fairly cold to maintain the MRI machine.

However, the MRI will give a more detailed picture of the brain. CT scan may tell you if the sutures are fused, but it may not give you all of the other information that the neurosurgeon is looking for with respect to brain development, etc. There are also some brain structures that are difficult to image w/ a CT.

I think it would be a good idea to discuss this with the neurosurgeon. If he/she feels strongly about the MRI, then I would insist that a pediatric anesthesiologist or pediatric intensive care physician be consulted to sedate Greta during the procedure.

I hope this information helps.

Sincerely,

CCK (Mother to 7 mo old dd in Docband for 3 weeks and Pediatric Intensive Care Physician)

Plagiocephaly From: marcyeiseman@...Date: Sun, 24 Feb 2008 10:50:49 -0800Subject: Re: INFO ON GRETA'S HEAD--NEUROSURGEON

OH thank you! I will be sure to ask! The last thing i would want to do is sedate her for no reason...I will ask if a ct scan is sufficient, so her head can be strapped and i can maybe hold her arms and legs...Thanks for the info!

INFO ON GRETA'S HEAD--NEUROSURGEON> > > Well, some of you were wondering why Greta's head looked the way it > did, with both sides looking flat. I dont have good news. Even though > my pediatrician diagnosed her with plagio, my gut told me > otherwise... SO, I made an appt with a neursurgeon. ..the neurosurgeon > felt her head, kept feeling it, and feeling it, very silent. I was > like, oh crap. I know what he is looking for. He said, I am going to > send Greta down for an XRAY of her skull. I asked, "why, you think > that the bones are coming together too quickly?" he said, "yes, I > cant feel a space in between the bones. I am not sure." My heart > sank. > She had the xray, and when he came back in after looking at it, he > said,"I still cant tell." > WHAT??!?!?!? So, then he says, "come back in 3 weeks, i want to give > her an MRI...She cant have surgery until then anyway."> OH MY GOSH. I cant even believe what I am hearing...Here I am hoping > the guy tells me, yes, she has plagio, a weird case of it, and my > worst nightmare came true.> > SO the reason her head looks like it does is because the bottom part > of her skull, the occiput is prominant, or being pushed out from the > pressure of her brain, and the bones pushing. I am praying he is > somehow wrong, and that this next doctor will see a space!> > Please pray for her, I will keep everyone informed...marcy> > > > > More new features than ever. Check out the new AOL Mail!> > > > > ____________ _________ _________ _________ _________ _________ _____________ ___> Never miss a thing. Make your home page. > http://www.. com/r/hs>

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[Guest guest]

I wanted to add - my dd has had 2 MRI's and a CT - she was sedated for both MRI's and was not for the CT - my dd is quite a bit older and for the CT I held her hand and let her lick a lollipop while she went in and out of the machine - I told her it was a ride.

At your dd's young age you might be able to schedule the CT during her nap time - so hopefully she will sleep thru it. They do need to be still but it is only for about 5 min.

As for the MRI - the sedation is scary for the parents - but honestly - for me the hardest part was not feeding her for the 6-8 hours before!

Feel free to email me if you have any other questions!!!

Jen and Luli - 26 months

Left tort - Right Plagio - Hanger Band Grad - CA

http://www.babiesonline.com/babies/j/jens5th/

Re: INFO ON GRETA'S HEAD--NEUROSURGEON

OH thank you! I will be sure to ask! The last thing i would want to do is sedate her for no reason...I will ask if a ct scan is sufficient, so her head can be strapped and i can maybe hold her arms and legs...Thanks for the info!

INFO ON GRETA'S HEAD--NEUROSURGEON

>

>

> Well, some of you were wondering why Greta's head looked the way

it

> did, with both sides looking flat. I dont have good news. Even

though

> my pediatrician diagnosed her with plagio, my gut told me

> otherwise... SO, I made an appt with a neursurgeon. ..the

neurosurgeon

> felt her head, kept feeling it, and feeling it, very silent. I was

> like, oh crap. I know what he is looking for. He said, I am going

to

> send Greta down for an XRAY of her skull. I asked, "why, you think

> that the bones are coming together too quickly?" he said, "yes, I

> cant feel a space in between the bones. I am not sure." My heart

> sank.

> She had the xray, and when he came back in after looking at it, he

> said,"I still cant tell."

> WHAT??!?!?!? So, then he says, "come back in 3 weeks, i want to

give

> her an MRI...She cant have surgery until then anyway."

> OH MY GOSH. I cant even believe what I am hearing...Here I am

hoping

> the guy tells me, yes, she has plagio, a weird case of it, and my

> worst nightmare came true.

>

> SO the reason her head looks like it does is because the bottom

part

> of her skull, the occiput is prominant, or being pushed out from

the

> pressure of her brain, and the bones pushing. I am praying he is

> somehow wrong, and that this next doctor will see a space!

>

> Please pray for her, I will keep everyone informed...marcy

>

>

>

>

> More new features than ever. Check out the new AOL Mail!

>

>

>

>

>

____________ _________ _________ _________ _________ _________ _

____________ ___

> Never miss a thing. Make your home page.

> http://www.. com/r/hs

>

Looking for last minute shopping deals? Find them fast with Search.

Helping your favorite cause is as easy as instant messaging. You IM, we give. Learn more.

More new features than ever. Check out the new AOL Mail!