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]

No idea chica, but good luck and blessings to you and your daughter. :)

A skull replacement? That sounds terrifying. My thoughts go out to your daughter.

blessings to you and your daughter. :)

No advice, But I'm with TxGal. I wish you luck and I will keep you two in my prayers!

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 .

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

UCLA [link to plasticsurgery.ucla.edu]

Thanks Daniel!

Any lead in any direction is helpful

They don't say anything about cranioplasty but I'll give them a call tomorrow. :)

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.

[email protected]

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.

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.

found it, [link to plasticsurgery.ucla.edu]

Done!

Mahalo!

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]

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. :(

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.

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]

Sorry I haven't kept up with what's going on but best of luck and good intentions sent your way.

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]

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 ..

original injury happened when she was 15

she's just about to turn 22 now

[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

TY

[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

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

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

Just hit the jackpot for resource links!

Wonder why I never found this site before?

[link to www.brain-surgery.us]

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". :)

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.