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Need Help GLP! Is There A Doctor In The House?!

 
Da Purple Chicken
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User ID: 12813953
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04/01/2012 10:06 PM

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Need Help GLP! Is There A Doctor In The House?!
Need to find the top craniofacial surgeons in the US, specializing in cranioplasty


I've been searching and searching on the net

it's a specialty within a specialty

I don't care where they are located (preferably within the USA BUT will consider other countries for the best of the best)

after 11 failed cranial surgeries, we want my daughter's skull replaced RIGHT

her original doctors saved her life but apparently, cranioplasty with such a massive bone defect (she's had both bone flaps removed) was not their forte


yeah, I know, this is GLP and all but one of my fellow loons out there must know!

Last Edited by Rev Woo-Woo on 04/01/2012 10:12 PM
“If we are peaceful, if we are happy, we can smile and blossom like a flower, and everyone in our family, our entire society, will benefit from our peace.”
Thich Nhat Hanh, Being Peace

"But ask the animals, and they will teach you,
or the birds in the sky, and they will tell you;
or speak to the earth, and it will teach you,
or let the fish in the sea inform you." - Job 12:7,8

"When the going gets weird, the weird turn pro." - Hunter S. Thompson

revstargazer (at) hotmail.com
Da Purple Chicken (OP)

User ID: 12813953
United States
04/01/2012 10:10 PM

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Re: Need Help GLP! Is There A Doctor In The House?!
Anyone know anything about the Colorado Center For Craniofacial & Skull Base Disorders in Denver?

[link to www.porterhospital.org]
“If we are peaceful, if we are happy, we can smile and blossom like a flower, and everyone in our family, our entire society, will benefit from our peace.”
Thich Nhat Hanh, Being Peace

"But ask the animals, and they will teach you,
or the birds in the sky, and they will tell you;
or speak to the earth, and it will teach you,
or let the fish in the sea inform you." - Job 12:7,8

"When the going gets weird, the weird turn pro." - Hunter S. Thompson

revstargazer (at) hotmail.com
TXGal4Truth

User ID: 1013398
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04/01/2012 10:16 PM
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Re: Need Help GLP! Is There A Doctor In The House?!
No idea chica, but good luck and blessings to you and your daughter. :)
So have I now become your enemy for telling you the TRUTH? Galatians 4:16
************************************
“Gravity explains the motions of the planets, but it cannot explain who sets the planets in motion.” ~Isaac Newton
************************************
We are called to be BOLD. ~Joshua 1:9~
************************************
You call me paranoid. I call you uninformed.

:tgdmwt:
Anonymous Coward
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04/01/2012 10:17 PM
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Re: Need Help GLP! Is There A Doctor In The House?!
A skull replacement? That sounds terrifying. My thoughts go out to your daughter.
Anonymous Coward
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04/01/2012 10:18 PM
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Re: Need Help GLP! Is There A Doctor In The House?!
blessings to you and your daughter. :)



hf
BooBooKitty

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04/01/2012 10:22 PM

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Re: Need Help GLP! Is There A Doctor In The House?!
No idea chica, but good luck and blessings to you and your daughter. :)
 Quoting: TXGal4Truth


No advice, But I'm with TxGal. I wish you luck and I will keep you two in my prayers!
An investment in knowledge pays the best interest.
-Benjamin Franklin
Daniel's Seventieth Seven
User ID: 13627865
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04/01/2012 10:26 PM
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Re: Need Help GLP! Is There A Doctor In The House?!
Not sure Nene-

But check out children's hospital in Columbus -

They helped with miracles on our daughter...

You still have the DSS email?

Send pm for doctor names .


hf
Da Purple Chicken (OP)

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04/01/2012 10:26 PM

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Re: Need Help GLP! Is There A Doctor In The House?!
A skull replacement? That sounds terrifying. My thoughts go out to your daughter.
 Quoting: Anonymous Coward 8361366


I used to think that way

but after almost 7 years and 11 surgeries,

I'm just more frustrated than anything else

turns out, all the complications my daughter has had were normal for the nature of her injury and the size of the skull being replaced

BUT

the several surgeons who have worked on her apparently were not aware of them and were completely baffled when they came up
“If we are peaceful, if we are happy, we can smile and blossom like a flower, and everyone in our family, our entire society, will benefit from our peace.”
Thich Nhat Hanh, Being Peace

"But ask the animals, and they will teach you,
or the birds in the sky, and they will tell you;
or speak to the earth, and it will teach you,
or let the fish in the sea inform you." - Job 12:7,8

"When the going gets weird, the weird turn pro." - Hunter S. Thompson

revstargazer (at) hotmail.com
Anonymous Coward
User ID: 3020064
04/01/2012 10:28 PM
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Re: Need Help GLP! Is There A Doctor In The House?!
UCLA [link to plasticsurgery.ucla.edu]
Da Purple Chicken (OP)

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04/01/2012 10:28 PM

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Re: Need Help GLP! Is There A Doctor In The House?!
Not sure Nene-

But check out children's hospital in Columbus -

They helped with miracles on our daughter...

You still have the DSS email?

Send pm for doctor names .


hf
 Quoting: Daniel's Seventieth Seven 13627865


Thanks Daniel!

Any lead in any direction is helpful
“If we are peaceful, if we are happy, we can smile and blossom like a flower, and everyone in our family, our entire society, will benefit from our peace.”
Thich Nhat Hanh, Being Peace

"But ask the animals, and they will teach you,
or the birds in the sky, and they will tell you;
or speak to the earth, and it will teach you,
or let the fish in the sea inform you." - Job 12:7,8

"When the going gets weird, the weird turn pro." - Hunter S. Thompson

revstargazer (at) hotmail.com
Da Purple Chicken (OP)

User ID: 12813953
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04/01/2012 10:32 PM

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Re: Need Help GLP! Is There A Doctor In The House?!
 Quoting: Anonymous Coward 3020064


hf

They don't say anything about cranioplasty but I'll give them a call tomorrow. :)
“If we are peaceful, if we are happy, we can smile and blossom like a flower, and everyone in our family, our entire society, will benefit from our peace.”
Thich Nhat Hanh, Being Peace

"But ask the animals, and they will teach you,
or the birds in the sky, and they will tell you;
or speak to the earth, and it will teach you,
or let the fish in the sea inform you." - Job 12:7,8

"When the going gets weird, the weird turn pro." - Hunter S. Thompson

revstargazer (at) hotmail.com
SwampWitch

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04/01/2012 10:34 PM

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Re: Need Help GLP! Is There A Doctor In The House?!
We have an amazing craniofacial Team here, believe it or not.

18 months-2 yrs ago we had a 3rd world kid flown here for extensive surgery ~ we had fantastic results.

It was a charity case, and the defect was almost unimaginable...something we don't routinely see in North America.

Please email me - I will do my best to set you up with our best guys.

glpSwampWitch@yahoo.com

Meanwhile, google Ghali E. Ghali.

He's amazing...and he handles cases most surgeons won't touch. I know he is the one I would want for my child.

heart
...'n dat's da name a dat tune!
Anonymous Coward
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04/01/2012 10:34 PM
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Re: Need Help GLP! Is There A Doctor In The House?!
Anyone know anything about the Colorado Center For Craniofacial & Skull Base Disorders in Denver?

[link to www.porterhospital.org]
 Quoting: Da Purple Chicken


I don't know about that center, but porter hospital was always top notch when I used to be a nurse and cutting edge, but I admit, I have NOT been around down there or anywhere in the medical area in denver for some time now.
Anonymous Coward
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04/01/2012 10:37 PM
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Re: Need Help GLP! Is There A Doctor In The House?!
 Quoting: Anonymous Coward 3020064


hf

They don't say anything about cranioplasty but I'll give them a call tomorrow. :)
 Quoting: Da Purple Chicken
found it, [link to plasticsurgery.ucla.edu]
Da Purple Chicken (OP)

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04/01/2012 10:54 PM

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Re: Need Help GLP! Is There A Doctor In The House?!
We have an amazing craniofacial Team here, believe it or not.

18 months-2 yrs ago we had a 3rd world kid flown here for extensive surgery ~ we had fantastic results.

It was a charity case, and the defect was almost unimaginable...something we don't routinely see in North America.

Please email me - I will do my best to set you up with our best guys.

glpSwampWitch@yahoo.com

Meanwhile, google Ghali E. Ghali.

He's amazing...and he handles cases most surgeons won't touch. I know he is the one I would want for my child.

heart
 Quoting: SwampWitch


Done!

Mahalo!
“If we are peaceful, if we are happy, we can smile and blossom like a flower, and everyone in our family, our entire society, will benefit from our peace.”
Thich Nhat Hanh, Being Peace

"But ask the animals, and they will teach you,
or the birds in the sky, and they will tell you;
or speak to the earth, and it will teach you,
or let the fish in the sea inform you." - Job 12:7,8

"When the going gets weird, the weird turn pro." - Hunter S. Thompson

revstargazer (at) hotmail.com
Anonymous Coward
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04/01/2012 10:55 PM
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Re: Need Help GLP! Is There A Doctor In The House?!
I would call Nemours/AI Dupont Children's Hospital in Delaware.

They are a "not for profit" research hospital and are very well funded. I know they have many patients that come from across the U.S. and even many from foreign countries to see the doctors there.

They also have housing for family members that travel long distances, so you can stay close to your child without staying in a hotel.

They have specialized in Pediatric Orthopedics and Pediatric Neurology, since around 1950, so at the very least, they may be able to give you reliable information on where you can take your daughter that would be somewhere closer.

I've heard Children's Hospital in Colorado is supposed to be very good too, but I think that is due to excellent internal medicine type care as opposed to orthopedics.

Good luck though wherever you decide to go.

[link to www.nemours.org]
Da Purple Chicken (OP)

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04/01/2012 10:58 PM

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Re: Need Help GLP! Is There A Doctor In The House?!
 Quoting: Anonymous Coward 3020064


hf

They don't say anything about cranioplasty but I'll give them a call tomorrow. :)
 Quoting: Da Purple Chicken
found it, [link to plasticsurgery.ucla.edu]
 Quoting: Anonymous Coward 3020064


A little different. Her 4th surgery was handled by a doctor with this specialty - didn't turn out well.

I know that the military is coming up with amazing advancements in this area as it is the number one injury and problem with returning soldiers. I would consider trying to get her into one of their pograms if it wasn't for worrying about them using her as a lab rat. :(
“If we are peaceful, if we are happy, we can smile and blossom like a flower, and everyone in our family, our entire society, will benefit from our peace.”
Thich Nhat Hanh, Being Peace

"But ask the animals, and they will teach you,
or the birds in the sky, and they will tell you;
or speak to the earth, and it will teach you,
or let the fish in the sea inform you." - Job 12:7,8

"When the going gets weird, the weird turn pro." - Hunter S. Thompson

revstargazer (at) hotmail.com
manyeagles

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04/01/2012 11:14 PM
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Re: Need Help GLP! Is There A Doctor In The House?!
I'll inquire with some doc's in the So Cal area in addition to one's I work with- they may have colleagues specializing in this arena. My prayers are with your daughter, family, and current "issues" that popped up as of late.
If there is no time
Then you have time for everything.
You're never in a hurry.
That's true feeedom.
Da Purple Chicken (OP)

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04/01/2012 11:22 PM

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Re: Need Help GLP! Is There A Doctor In The House?!
I'll inquire with some doc's in the So Cal area in addition to one's I work with- they may have colleagues specializing in this arena. My prayers are with your daughter, family, and current "issues" that popped up as of late.
 Quoting: manyeagles


Thank you!

Just ran across a story of a guy with a similar surgery. (they removed a bit more from my daughter - she has only a one inch strip down the center) However, in my daughter's case, her replaced bone reabsorbed and thus started the failed series of replacements.

[link to www.foxnews.com]
“If we are peaceful, if we are happy, we can smile and blossom like a flower, and everyone in our family, our entire society, will benefit from our peace.”
Thich Nhat Hanh, Being Peace

"But ask the animals, and they will teach you,
or the birds in the sky, and they will tell you;
or speak to the earth, and it will teach you,
or let the fish in the sea inform you." - Job 12:7,8

"When the going gets weird, the weird turn pro." - Hunter S. Thompson

revstargazer (at) hotmail.com
IRQ_1

User ID: 1157608
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04/01/2012 11:30 PM
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Re: Need Help GLP! Is There A Doctor In The House?!
I'll inquire with some doc's in the So Cal area in addition to one's I work with- they may have colleagues specializing in this arena. My prayers are with your daughter, family, and current "issues" that popped up as of late.
 Quoting: manyeagles


Thank you!

Just ran across a story of a guy with a similar surgery. (they removed a bit more from my daughter - she has only a one inch strip down the center) However, in my daughter's case, her replaced bone reabsorbed and thus started the failed series of replacements.

[link to www.foxnews.com]
 Quoting: Da Purple Chicken


Sorry I haven't kept up with what's going on but best of luck and good intentions sent your way.
Jack of all trades, master of none.
We are all the result of our past choices meeting the future.
"shall not be infringed."
Da Purple Chicken (OP)

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04/02/2012 12:33 AM

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Re: Need Help GLP! Is There A Doctor In The House?!
I have nothing but gratitude for the doctors that saved her life and those that at least tried to fix her head. This is such a rapidly developing field of medicine that they can't be blamed for not knowing. I've found it extremely difficult to find any info on the internet in layman's language - anything that is out there is in pure medical speak.


Just came across this while searching for recent military advancements in the field -


"Patients surviving a decompressive craniectomy
after military blast trauma represent a
diverse and unique population that has been poorly
studied16 (Fig. 1). This group of patients ultimately bF1
requires reconstruction of the cranial defect not
only for brain protection and cosmetic restoration
of the calvarium but also for correction of the syndrome
of the trephined (dizziness, fatigability, vague
discomfort at the site of the defect, mental
depression, apprehension and insecurity, and intolerance
to vibration). Currently, there are gaps in
the literature detailing the incidence, natural history,
and appropriate treatment of this unique
population of patients"

[link to www.liebertpub.com]
“If we are peaceful, if we are happy, we can smile and blossom like a flower, and everyone in our family, our entire society, will benefit from our peace.”
Thich Nhat Hanh, Being Peace

"But ask the animals, and they will teach you,
or the birds in the sky, and they will tell you;
or speak to the earth, and it will teach you,
or let the fish in the sea inform you." - Job 12:7,8

"When the going gets weird, the weird turn pro." - Hunter S. Thompson

revstargazer (at) hotmail.com
redrosie

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04/02/2012 12:56 AM
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Re: Need Help GLP! Is There A Doctor In The House?!
How old is she .. under 18 the childrens hospital in CT .. saved my sisters life when she [in remission now] had dermtomyositis .. couldn't fix everything but did the most they could ..
.... 22426221213 ....
Da Purple Chicken (OP)

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04/02/2012 12:58 AM

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Re: Need Help GLP! Is There A Doctor In The House?!
How old is she .. under 18 the childrens hospital in CT .. saved my sisters life when she [in remission now] had dermtomyositis .. couldn't fix everything but did the most they could ..
 Quoting: redrosie


original injury happened when she was 15

she's just about to turn 22 now
“If we are peaceful, if we are happy, we can smile and blossom like a flower, and everyone in our family, our entire society, will benefit from our peace.”
Thich Nhat Hanh, Being Peace

"But ask the animals, and they will teach you,
or the birds in the sky, and they will tell you;
or speak to the earth, and it will teach you,
or let the fish in the sea inform you." - Job 12:7,8

"When the going gets weird, the weird turn pro." - Hunter S. Thompson

revstargazer (at) hotmail.com
redrosie

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04/02/2012 01:00 AM
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Re: Need Help GLP! Is There A Doctor In The House?!
[link to www.connecticutchildrens.org]

Call them anyways .. tell them the deal and they will point you in the right place .. uconn is also a good hospital
.... 22426221213 ....
Da Purple Chicken (OP)

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04/02/2012 01:01 AM

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Re: Need Help GLP! Is There A Doctor In The House?!
[link to www.connecticutchildrens.org]

Call them anyways .. tell them the deal and they will point you in the right place .. uconn is also a good hospital
 Quoting: redrosie


TY hf
“If we are peaceful, if we are happy, we can smile and blossom like a flower, and everyone in our family, our entire society, will benefit from our peace.”
Thich Nhat Hanh, Being Peace

"But ask the animals, and they will teach you,
or the birds in the sky, and they will tell you;
or speak to the earth, and it will teach you,
or let the fish in the sea inform you." - Job 12:7,8

"When the going gets weird, the weird turn pro." - Hunter S. Thompson

revstargazer (at) hotmail.com
redrosie

User ID: 13660135
United States
04/02/2012 01:01 AM
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Re: Need Help GLP! Is There A Doctor In The House?!
[link to health.uchc.edu]

If you need some simplicity broken down from terminology let me know ..

Another thing .. sounds odd, but start looking at plastic sugeons for breast augmentation .. a lot of the older ones did facial reconstruction on veterens ..

Last Edited by redrosie on 04/02/2012 01:06 AM
.... 22426221213 ....
DonHeau

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04/02/2012 01:04 AM
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Re: Need Help GLP! Is There A Doctor In The House?!
Yes.


And.


There is no one, ANYWHERE, who REPLACES SKULLS.



Now, what do you really want?

Reconstruction of some sort?

Or, are you just full of shit?

Come on now.

NO ONE REPLACES SKULLS.

Last Edited by DonHeau on 04/02/2012 01:05 AM
We opened doors by thinking.
Da Purple Chicken (OP)

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04/02/2012 01:11 AM

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Re: Need Help GLP! Is There A Doctor In The House?!
Yes.


And.


There is no one, ANYWHERE, who REPLACES SKULLS.



Now, what do you really want?

Reconstruction of some sort?

Or, are you just full of shit?

Come on now.

NO ONE REPLACES SKULLS.
 Quoting: DonHeau


I don't know what reality you live in but they do in mine

my daughter has had her's removed and replaced several times now

the first time it was her own bone which later reabsorbed
“If we are peaceful, if we are happy, we can smile and blossom like a flower, and everyone in our family, our entire society, will benefit from our peace.”
Thich Nhat Hanh, Being Peace

"But ask the animals, and they will teach you,
or the birds in the sky, and they will tell you;
or speak to the earth, and it will teach you,
or let the fish in the sea inform you." - Job 12:7,8

"When the going gets weird, the weird turn pro." - Hunter S. Thompson

revstargazer (at) hotmail.com
Da Purple Chicken (OP)

User ID: 12813953
United States
04/02/2012 01:12 AM

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Re: Need Help GLP! Is There A Doctor In The House?!
Just hit the jackpot for resource links!

Wonder why I never found this site before?

[link to www.brain-surgery.us]
“If we are peaceful, if we are happy, we can smile and blossom like a flower, and everyone in our family, our entire society, will benefit from our peace.”
Thich Nhat Hanh, Being Peace

"But ask the animals, and they will teach you,
or the birds in the sky, and they will tell you;
or speak to the earth, and it will teach you,
or let the fish in the sea inform you." - Job 12:7,8

"When the going gets weird, the weird turn pro." - Hunter S. Thompson

revstargazer (at) hotmail.com
Da Purple Chicken (OP)

User ID: 12813953
United States
04/06/2012 03:33 AM

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Re: Need Help GLP! Is There A Doctor In The House?!
We have an amazing craniofacial Team here, believe it or not.

18 months-2 yrs ago we had a 3rd world kid flown here for extensive surgery ~ we had fantastic results.

It was a charity case, and the defect was almost unimaginable...something we don't routinely see in North America.

Please email me - I will do my best to set you up with our best guys.

glpSwampWitch@yahoo.com

Meanwhile, google Ghali E. Ghali.

He's amazing...and he handles cases most surgeons won't touch. I know he is the one I would want for my child.

heart
 Quoting: SwampWitch


I just wanted to thank you SwampWitch and everyone else that has offered suggestions.

Just discovered that a friend's step mom is Marcelle Kardush PHD and she lives right down the street from me.

[link to doctorbagheri.com]

We just spoke this evening and I gave her your suggestions plus what I've found out through research. She apparently is very well known and respected in her field, has worked closely with top neurosurgeons and is "on the case". :)
“If we are peaceful, if we are happy, we can smile and blossom like a flower, and everyone in our family, our entire society, will benefit from our peace.”
Thich Nhat Hanh, Being Peace

"But ask the animals, and they will teach you,
or the birds in the sky, and they will tell you;
or speak to the earth, and it will teach you,
or let the fish in the sea inform you." - Job 12:7,8

"When the going gets weird, the weird turn pro." - Hunter S. Thompson

revstargazer (at) hotmail.com
Da Purple Chicken (OP)

User ID: 12813953
United States
04/18/2012 05:54 PM

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Re: Need Help GLP! Is There A Doctor In The House?!
Success!

I just spoke with one of the leading military experts in the field of craniofacial surgery and cranioplasty. Turns out, he not only trained at Walter Reed with my daughter's neurosurgeon but also worked with him at Tripler. (wish he could work on her!) He referred me to Dr. Bradley of UCLA as being one of the leading experts in the world. Also spoke with Dr. Bradley's office and they are more than willing to help her and will be speaking with her neurosurgeon and us at her upcoming consultation appointment.

Looks like we'll be moving to Cali - at least until she is finally healed.
“If we are peaceful, if we are happy, we can smile and blossom like a flower, and everyone in our family, our entire society, will benefit from our peace.”
Thich Nhat Hanh, Being Peace

"But ask the animals, and they will teach you,
or the birds in the sky, and they will tell you;
or speak to the earth, and it will teach you,
or let the fish in the sea inform you." - Job 12:7,8

"When the going gets weird, the weird turn pro." - Hunter S. Thompson

revstargazer (at) hotmail.com