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Wow. Good luck, I'm sure your daughter is in good hands and she will turn out just find. How did they determine she had a closed suture?

Amy

-----Original Message-----From: Dominika White [mailto:dominika@...]Sent: Tuesday, July 25, 2000 2:16 PMPlagiocephalyegroupsSubject: Surgery

Just wanted you all to know that aimee is going in for a cat scan and most likely surgery. It appears that she has a closed suture! I am devastated and scared out of my mind. I have been crying now for the past 2 hrs. and have called my mom in Europe who is going to fly back here to be with me during aimees' surgery. She will spend three days in the hospital plus one day in ICU. If anyone of you has any experience with this please please help! I would also appreciate prayers for her that everything will turn out fine! God Bless!

Domi

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we went to a craniofacial clinic and then we had some x-rays done and thats how they figured it out

----- Original Message -----

From: Amy Sims

'Plagiocephalyegroups'

Sent: Tuesday, July 25, 2000 2:12 PM

Subject: RE: Surgery

Wow. Good luck, I'm sure your daughter is in good hands and she will turn out just find. How did they determine she had a closed suture?

Amy

-----Original Message-----From: Dominika White [mailto:dominika@...]Sent: Tuesday, July 25, 2000 2:16 PMPlagiocephalyegroupsSubject: Surgery

Just wanted you all to know that aimee is going in for a cat scan and most likely surgery. It appears that she has a closed suture! I am devastated and scared out of my mind. I have been crying now for the past 2 hrs. and have called my mom in Europe who is going to fly back here to be with me during aimees' surgery. She will spend three days in the hospital plus one day in ICU. If anyone of you has any experience with this please please help! I would also appreciate prayers for her that everything will turn out fine! God Bless!

Domi

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Dominika,

Now I'm really thinking I should push for x-rays!

How old is Aimee? (I'm new and don't know the history of you guys!) It is good, at least, that they've caught the problem and will be able to fix it.

I'm sure having your mother there for support will be very helpful. I'm kind of glad we've decided to go to Dallas for treatment, because I know my mother will be a big help.

Well, hang in there and keep us posted.

Amy

(p.s. I've always loved the "Aimee" spelling-it is so pretty!)

<we went to a craniofacial clinic and then we had some x-rays done and thats how they figured it out >

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well....this was our first appt. at the cranifacial place and they immediatley knew...I would push for x-rays to though...especially if you are feeling concern!

domi

ps...thank you for the little ps....hugs!

----- Original Message -----

From: Amy Sims

'Plagiocephalyegroups'

Sent: Tuesday, July 25, 2000 2:23 PM

Subject: RE: Surgery

Dominika,

Now I'm really thinking I should push for x-rays!

How old is Aimee? (I'm new and don't know the history of you guys!) It is good, at least, that they've caught the problem and will be able to fix it.

I'm sure having your mother there for support will be very helpful. I'm kind of glad we've decided to go to Dallas for treatment, because I know my mother will be a big help.

Well, hang in there and keep us posted.

Amy

(p.s. I've always loved the "Aimee" spelling-it is so pretty!)

<we went to a craniofacial clinic and then we had some x-rays done and thats how they figured it out >

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I don't have any personal experience with the surgery. However, when

some friends saw our son, Logan's, helmet they told us of their

friends' son who had closed sutures and had surgery. Two weeks later

they said you couldn't even tell he had had surgery (besides the

scars) - He was playing and so happy. The little boy wore a helmet

for a month or two afterwards for protection, I assume.

Your little one will be fine - we will all be thinking of you. Post

us when you get a date for the surgery. -- becky

--- In Plagiocephalyegroups, " Dominika White " <dominika@d...>

wrote:

> Just wanted you all to know that aimee is going in for a cat scan

and most likely surgery. It appears that she has a closed suture! I

am devastated and scared out of my mind. I have been crying now for

the past 2 hrs. and have called my mom in Europe who is going to fly

back here to be with me during aimees' surgery. She will spend three

days in the hospital plus one day in ICU. If anyone of you has any

experience with this please please help! I would also appreciate

prayers for her that everything will turn out fine! God Bless!

>

> Domi

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Domi,

Prayers are being sent your way. Give Aimee a hug! She will be ok!

Amy :-)

----- Original Message -----

From: Dominika White

Plagiocephalyegroups

Sent: Tuesday, July 25, 2000 11:16 AM

Subject: Surgery

Just wanted you all to know that aimee is going in for a cat scan and most likely surgery. It appears that she has a closed suture! I am devastated and scared out of my mind. I have been crying now for the past 2 hrs. and have called my mom in Europe who is going to fly back here to be with me during aimees' surgery. She will spend three days in the hospital plus one day in ICU. If anyone of you has any experience with this please please help! I would also appreciate prayers for her that everything will turn out fine! God Bless!

Domi

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Domi,

Hi from Australia.

My thoughts are with you.

If I can give any advice it would be to have both an X ray and a Cat

scan to determine if the sutures are closed. We went through hell

over here for six months whilst the doctors determined whether Harley

had closed sutures or plagio. They actually made a mistake

interpruting the Cat scan and sent us down the surgery road because a

registrar read the Cat scan wrong! Thank goodness we had a

conservative neuro who virtually tossed the Cat scan in the bin and

said it did not make sense! They re looked at it and realised their

mistake. It is interesting that it was clear on the X ray though!

Anyway, this is probably not much help, but I know the absolute fear

you are facing. You are really lucky to have the support of such a

group as this, it didn't exist last year!

Good luck!

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In a message dated 7/25/00 11:14:00 AM Pacific Daylight Time,

dominika@... writes:

<< Just wanted you all to know that aimee is going in for a cat scan and most

likely surgery. >>

Domi, I hope everything goes well for you. I hope there is someone in

the group that can give you some insight on the matter. Belinda(Indiana)

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Domi:

Do you know if it is the lamboid suture, or another?

Kendra

Dominika White wrote:

we

went to a craniofacial clinic and then we had some x-rays done and thats

how they figured it out

----- Original Message -----

From:

Amy

Sims

'Plagiocephalyegroups'

Sent: Tuesday, July 25, 2000 2:12

PM

Subject: RE: Surgery

Wow.

Good luck, I'm sure your daughter is in good hands and she will turn out

just find. How did they determine she had a closed suture?Amy

-----Original

Message-----

From: Dominika White [mailto:dominika@...]

Sent: Tuesday, July 25, 2000

2:16 PM

Plagiocephalyegroups

Subject: Surgery

Just wanted you all to know that aimee

is going in for a cat scan and most likely surgery. It appears that

she has a closed suture! I am devastated and scared out of my mind.

I have been crying now for the past 2 hrs. and have called my mom in Europe

who is going to fly back here to be with me during aimees' surgery.

She will spend three days in the hospital plus one day in ICU. If

anyone of you has any experience with this please please help! I

would also appreciate prayers for her that everything will turn out fine!

God Bless! DomiTo

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i believe it is called saggitalsynotosis?

----- Original Message -----

From: & Kendra

Plagiocephalyegroups

Sent: Tuesday, July 25, 2000 5:58 PM

Subject: Re: Surgery

Domi: Do you know if it is the lamboid suture, or another? Kendra Dominika White wrote:

we went to a craniofacial clinic and then we had some x-rays done and thats how they figured it out

----- Original Message -----

From: Amy Sims

'Plagiocephalyegroups'

Sent: Tuesday, July 25, 2000 2:12 PM

Subject: RE: Surgery Wow. Good luck, I'm sure your daughter is in good hands and she will turn out just find. How did they determine she had a closed suture?Amy

-----Original Message----- From: Dominika White [mailto:dominika@...] Sent: Tuesday, July 25, 2000 2:16 PM Plagiocephalyegroups Subject: Surgery Just wanted you all to know that aimee is going in for a cat scan and most likely surgery. It appears that she has a closed suture! I am devastated and scared out of my mind. I have been crying now for the past 2 hrs. and have called my mom in Europe who is going to fly back here to be with me during aimees' surgery. She will spend three days in the hospital plus one day in ICU. If anyone of you has any experience with this please please help! I would also appreciate prayers for her that everything will turn out fine! God Bless! Domi

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So, the sagittal suture is closed/closing? That's the most "common" of the fused sutures, actually... I really feel for you, though Domi -- please look into the Caps site as well, for I'm sure there are many there who can lend support to you and help you through this difficult time.

If you haven't already take a look at this website for some information on craniosynostosis

http://www.jamestgoodrich.com/contents.html and click on the Sagittal Synostosis link.

*gentle warning* Some of the pix are a little hard to look at for some of the other types of synostosis, but remember, they are of children who did not have surgery right away.... but it is a very informative site of what is involved in fixing the fused suture/s.

Take Care. H.

-----Original Message-----From: Dominika White [mailto:dominika@...]Sent: Tuesday, July 25, 2000 7:23 PMPlagiocephalyegroupsSubject: Re: Surgery

i believe it is called saggitalsynotosis?

----- Original Message -----

From: & Kendra

Plagiocephalyegroups

Sent: Tuesday, July 25, 2000 5:58 PM

Subject: Re: Surgery

Domi: Do you know if it is the lamboid suture, or another? Kendra Dominika White wrote:

we went to a craniofacial clinic and then we had some x-rays done and thats how they figured it out

----- Original Message -----

From: Amy Sims

'Plagiocephalyegroups'

Sent: Tuesday, July 25, 2000 2:12 PM

Subject: RE: Surgery Wow. Good luck, I'm sure your daughter is in good hands and she will turn out just find. How did they determine she had a closed suture?Amy

-----Original Message----- From: Dominika White [mailto:dominika@...] Sent: Tuesday, July 25, 2000 2:16 PM Plagiocephalyegroups Subject: Surgery Just wanted you all to know that aimee is going in for a cat scan and most likely surgery. It appears that she has a closed suture! I am devastated and scared out of my mind. I have been crying now for the past 2 hrs. and have called my mom in Europe who is going to fly back here to be with me during aimees' surgery. She will spend three days in the hospital plus one day in ICU. If anyone of you has any experience with this please please help! I would also appreciate prayers for her that everything will turn out fine! God Bless! Domi

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What a scary time for you and your family. From a CAT scan they gave my

daughter at 6 weeks the radioloigst dignosed my daughter with

Craniosysnostis. We went to a neurosurgeon to get schelduled for the surgery

and to ask many many questions to find out she did not have cranio. I cried

for 2 days straight, beat myself up for doing something wrong with my

daughter to cause this, and had terrible thoughs and nightmares about the

surgery and her outcome. God blessed us with Plagio and not craniosysnostis.

I truly hope the same outcome for you and your family. You will be in

Shelbey and my prayers.

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Hi Domi,

I certainially can relate to your situation. My son was also

diagnosed with crainosynostosis at four months old. The neurologist

took one look at him and proclaimed craino. He was scheduled for a

CAT scan a few days later and we were prepared to go to Boston for

surgery. He had the CAT scan and the neurologist looked at the films

and still said crainio. However we met with a neurosurgeon in Boston

and was advised the suture is not closed and my son was then

diagnosed with plagio. He has worn a helmet now for 6 weeks and doing

quite well.

I know how the thought of surgery looming over your head is eating

away at you now. Keep your chin up as you never know what a

neurosurgeon who is experienced in this field will say. Please do get

on the crainio support website as others have suggested. During my

ordeal I was able to hook up with someone who's daughter had surgery

for crainio. at three months through a different eloop. This was such

a great help to me. If I still had her email address I would pass it

along to you.

Best of luck.

Masse

--- In Plagiocephalyegroups, " Dominika White " <dominika@d...>

wrote:

> Just wanted you all to know that aimee is going in for a cat scan

and most likely surgery. It appears that she has a closed suture! I

am devastated and scared out of my mind. I have been crying now for

the past 2 hrs. and have called my mom in Europe who is going to fly

back here to be with me during aimees' surgery. She will spend three

days in the hospital plus one day in ICU. If anyone of you has any

experience with this please please help! I would also appreciate

prayers for her that everything will turn out fine! God Bless!

>

> Domi

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...

Thank God your son was diagnosed with Plagio rather than cranio. I am

praying that this will be the case with Aimee however i feel the worse will

be the outcome! Thank you for your well wishes!

domi

----- Original Message -----

From: " Masse " <kmasse@...>

<Plagiocephalyegroups>

Sent: Wednesday, July 26, 2000 9:01 AM

Subject: Re: Surgery

> Hi Domi,

>

> I certainially can relate to your situation. My son was also

> diagnosed with crainosynostosis at four months old. The neurologist

> took one look at him and proclaimed craino. He was scheduled for a

> CAT scan a few days later and we were prepared to go to Boston for

> surgery. He had the CAT scan and the neurologist looked at the films

> and still said crainio. However we met with a neurosurgeon in Boston

> and was advised the suture is not closed and my son was then

> diagnosed with plagio. He has worn a helmet now for 6 weeks and doing

> quite well.

>

> I know how the thought of surgery looming over your head is eating

> away at you now. Keep your chin up as you never know what a

> neurosurgeon who is experienced in this field will say. Please do get

> on the crainio support website as others have suggested. During my

> ordeal I was able to hook up with someone who's daughter had surgery

> for crainio. at three months through a different eloop. This was such

> a great help to me. If I still had her email address I would pass it

> along to you.

>

> Best of luck.

>

> Masse

>

>

>

>

>

>

>

> > Just wanted you all to know that aimee is going in for a cat scan

> and most likely surgery. It appears that she has a closed suture! I

> am devastated and scared out of my mind. I have been crying now for

> the past 2 hrs. and have called my mom in Europe who is going to fly

> back here to be with me during aimees' surgery. She will spend three

> days in the hospital plus one day in ICU. If anyone of you has any

> experience with this please please help! I would also appreciate

> prayers for her that everything will turn out fine! God Bless!

> >

> > Domi

>

>

>

>

>

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  • 1 month later...

My wife two weeks ago had GB surgery. I just found your list today, by doing a

search on omega 3 and olive oil. Anyway would the liver and GB flush still be

good for my wife? Would this flush out the stones in her liver even though she

no longer has th GB?

Thanks,

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  • 1 year later...

Charlene,

My best wishes are going out to you right now for a safe and completely well

done surgery....woohooo! No more implants! You will be feeling so good

about this decision...and I pray you begin seeing improvements immediately.

Just relax and let the peace of God overtake you. You will get through the

anesthesia fine and you'll be back home in no time.

Then just focus on good, healing thoughts. And when you are ready to get

back to us, we will be anxiously awaiting to hear about your results, and we

will be here to help through your recovery.

god bless!

Love,

Patty

----- Original Message -----

From: " Charlene Pannarale " <criviezzi@...>

< >

Sent: Friday, December 07, 2001 6:50 AM

Subject: Re: e Is Alive

> :

>

> I'll be leaving for my surgery in about 15 mins. I'm pretty nervous! My

> capsules are being sent to pathology is that not good enough? Well if i

> have time I'll pick up a camera. Anyway, I'm really nervous about the

> operation and if I'll be nauseated. I hate nausea but they are going to

> drip an anti-nausea in the i.v. I'm going to be nervous to see my breasts

> but actually I've come to almost hate my breasts because of everything so

I

> don't think it should be that big a deal. Got to go.

>

> Luv,

> Charlene

>

> ----- Original Message -----

> From: " Heer " <cjheer@...>

> < >

> Sent: Thursday, December 06, 2001 10:44 PM

> Subject: Re: e Is Alive

>

>

> > Charlene when is your surgery ??? Tomorrow am right? sending love, hugs

> and

> > prayers your way tonight honey, you will be fine, if you get anxious

> > remember to ask them for some versed in you IV when your in the pre op

> room

> > it will help allot with your fears and make you feel great. It is a

> > fantastic medication.

> >

> > Also get something for after, pain meds, and try to rest rest rest,

drink

> > lots of water.

> >

> > Are you going to have drains, and also are you going to get pictures of

> the

> > capsules, I would insist, bring along a throw away camera so that

someone

> > can take a picture of them when they come out or ask if you can see

them.

> >

> > GOOD LUCK YOU WILL BE GREAT

> > Love,

> >

> > :)

> >

> > ----- Original Message -----

> > From: " Charlene Pannarale " <criviezzi@...>

> > < >

> > Sent: Thursday, December 06, 2001 8:53 PM

> > Subject: Re: e Is Alive

> >

> >

> > > Thank God. I'm glad to hear she is okay. Hopefully she will get back

> to

> > > you or someone else shortly.

> > > ----- Original Message -----

> > > From: " carrie_heer " <cjheer@...>

> > > < >

> > > Sent: Thursday, December 06, 2001 10:40 PM

> > > Subject: e Is Alive

> > >

> > >

> > > > To all that were concerned I called University Hospital today in

> > > > Denver and asked for PACU they said e was there, I was put on

> > > > hold for awhile and eventually was told that she was busy with a

> > > > patient and that she would take a message and have e call me

> > > > back, well I was at work and I am not sure if she could call long

> > > > distance at her job or not, some hospitals make you have an access

> > > > code to dial out of area like Stanford so I don't know, she never

> > > > called me back so again, I have no idea how she is, but I know she

> > > > was at work and is alive, maybe she just decided she needed a break

> > > > for awhile or whatever is going on in her life right now, I do not

> > > > know, but I did ask for her by her full first and last name so I am

> > > > confident that she is at least physically ok.

> > > >

> > > > So that is the report on e.

> > > >

> > > > I think that next time we, myself included, should not resort to

> > > > anger or hostility over situations like this. It was simple enough

to

> > > > find her and had I thought of it earlier I possibly could have

spared

> > > > us all the angry posts earlier.

> > > >

> > > > I think that we should all use care when we post we are upset and

> > > > distraught and then just up and vanish because at least most of us

> > > > here do care enough about eachother as to become concerned about one

> > > > another.

> > > >

> > > > However, when we are emotionally hurting sometimes we do not think

> > > > logically either.

> > > >

> > > > At any rate at least we know that e is well enough to be at

her

> > > > job and if anyone cares to try to contact her again then they can do

> > > > so. My opinion at this point is to give her space...she has my

number

> > > > and I think she will reach out when she is ready.

> > > >

> > > > Love,

> > > >

> > > >

> > > >

> > > >

> > > >

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