You'll find hundreds of files on cleft lip, cleft palate here on

This one is about: Crouzon Syndrome Defined

(c) 1997 Wide Smiles
This Document is from WideSmiles Website -
Reprint in whole or in part, with out written permission from Wide Smiles
is prohibited. Email:

Crouzon Syndrome Defined

by Penny Halverson

Crouzon Syndrome is a congenital defect which affect the skull and the upper facial bone. Part of the skull's plates called the Coronal and Saggittal sutures become completely fused at birth which caused to severely deform the underdeveloped upper facial bone area.

Here are a list of descriptions of Crouzon Syndrome:

flattening of the back & top of the head included the forehead
shallowed orbits and proptosis
concave or dished in upper facial cheekbones
parrot beaked like nose
protruding jaw 
overcrowded teeth
missing atresia (missing ear canals)
conductive hearing loss (mild to severe or possible deafness)
deformity of the middle ears
vision problem including possible damage of the cornea due to keratisis
Type II: with limb abnormalities such fused elbows, wrist, fingers, etc.
spinal curvative

Most of the above are required to be corrected by a team of specialists such as a craniofacial plastic surgeon, Neurosurgeon, Orthodontist, and many others to perform the skull remodeling, major craniofacial plastic surgery, and the orthodontic works to be done anywhere from an infant to adult.

My Experiences: I have had all of above as described which is why I have what is called Crouzon Syndrome Type II.

From 1960-64, I had 6 cranial surgeries.
In 1965, Repositioned my right elbow so I can reach my face closely
In 1966, Both eye surgery done to correct crossed eyes
In 1967, Had both recreated ear canals surgery
1974, Had 8 teeth extracted in oral surgery
Feb 1976, Midface advancement LeFort III surgery
Nov 1976, Jaw surgery

Currently, I am still severely hearing impaired and wear a BTE hearing aid on the right ear. My left ear is completely deaf. But I can use the phone that come with an amplifier in it. I will be getting a TDD soon.

Also both of my elbows are still completely fused at about 70-80 degree angle. I am able to manage and maneuver in a lot of areas I can do such as I can type on the computer, drive a car, wash & brush my hair, wash my face, brush my teeth, dressing and even putting on my hearing aid in seconds. I have to admit I really surprise people that I am able to do these things on my own with little effort. It's amazing.

From all the surgeries I have had, I received so much love and support from my family and friends. I have been considered as being fortunate to get thru all the things that take place in my life. It was a tough road but I was given a gift of so many greatest challenges that I am very blessed with.

Currently, I work for the University of Washington as a Fiscal Technician for 16 yrs. I do accounting, administrative and fiscal supports for the Dept of Accounting Operations. I like my job.

Well I hope this help explained what is Crouzon Syndrome and learned about my shared experiences.

Wide Smiles depends on donations to continue to provide this resource for you.
Please help keep us online!

Cleft Links | Wide Smiles | Photo Gallery