Hi.....yes, cranial instability is generally related to EDS...but basically it is best described like Dr Menzese had noted......imagine a pumpkin put ontop of a tall pointed stick.....what will happen overtime is the pupmkin will bobble and slowly slide down onto the stick and the stick is forced into the pumpkin.
The resolution is cranial fusion......many of the severe HA's can be due to this problem.
There r a few chiarians doing diff type of streghtening exercises to avoid the fusion which will limit mobility of the neck.
I was told I had this instability, but at this point I am doing fine.
Driving in a car u may want to wear a neck brace to keep ur head as still as possible.
my understanding of "cranial instability" is excessive mobility in the neck/cranial area that demonstrates abnormal movement and potentially applies pressures upon cranial nerves, etc.
i was described the "pumpkin on a stick syndrome" as a description for "cranial settling" which I think is frequently associated with "cranial instability" but also creates problems with cranial nerves, etc.
Invasive cervical traction (ICT) is a definitive test for establishing the diagnosis of
craniocervical instability with functional cranial settling. Currently available
radiographic studies including cervical MRI and flexion/extension X-rays are not
sufficient to make the diagnosis. Typical candidates for ICT are patients with
symptoms and signs of lower brainstem dysfunction occurring in association with
the following conditions: failed Chiari surgery; hereditary disorders of connective
tissue (e.g., Ehlers-Danlos syndrome, MASS phenotype, Marfans syndrome);
rheumatoid arthritis; osseous disorders of the craniocervical junction; and
posttraumatic whiplash injuries.
Technique: ICT is performed in the operating room under strict medical
supervision. Patients are anesthetized briefly using MAC and cranial tongs and
implanted under local anesthesia. After awakening, the patient is placed in a
sitting position in a hospital bed with an overhead frame and a pulley system.
The head is extracted upon the neck in neutral position with 5o extension using
graduated weights under fluoroscopic guidance. With each 5 lb. increment, the
patient’s presenting symptoms, neurological findings, and fluoroscopic anatomy
of the craniocervical junction are recorded and entered into a database. Patients
with highly positive ICT tests typically experience a complete relief of symptoms
and signs at a specific extraction weight that correlates with anatomic findings
such as reduction of the odontoid tip within the ring of C1 and reduction of the C1
arch below the base of the skull that can be measured precisely.
Objective: The goals of ICT are as follows: (1) to establish or rule out the
diagnosis of craniocervical instability with functional cranial settling; (2) to identify
patients who do not require craniocervical fusion, thereby avoiding an
unnecessary surgical step; (3) to identify patients who are potential candidates
for craniocervical fusion - in extraction and (4) to acquire precise radiographic
and extraction weight measurements that can be reproduced at the time of the
craniocervical fusion to maximize the likelihood of optimal outcome. It is TCI
policy that all patients with clinical suspicion of craniocervical instability/functional
cranial settling undergo ICT prior to surgery.
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