Re: Would like information please-Jill and anyone else

March 28, 2004

Hi Lana,

Unfortuantely, I have nothign specific to that at all, all I have is general

spine and it's more about scoliosis then any other type of deformity. I am

so sorry! I did find the following abstracts for you though:

GJ Halko, R Cobb, and M Abeles

Patients with type IV Ehlers-Danlos syndrome may be predisposed to

atlantoaxial subluxation.

J Rheumatol, November 1, 1995; 22(11): 2152-5.

OBJECTIVE: To determine if atlantoaxial subluxation is a complication of

Ehlers-Danlos Syndrome (EDS). METHODS: Observational study of a selected

cohort of patients with EDS attending a national meeting. Twenty-six

patients with EDS (19 with type III; 3 with type IV; 1 each with types II

and I; 2 with undefined subtypes) were radiologically evaluated. Lateral

flexion-extension views of the cervical spine in each patient were read in

blinded fashion by a radiologist and compared to unblinded interpretations

made by a separate radiologist. Measurement was taken from the most inferior

aspect of the anterior arch of C1 to the dens along a horizontal plane. The

remainder of the radiograph was examined for abnormalities. RESULTS: Two

patients with EDS type IV had radiographic evidence of atlantoaxial

subluxation (p = 0.013 Fisher's exact test). Evidence of horizontal

translation between vertebral bodies below C2 was noted in 3 patients.

Cervical arthrosis was present in 9. CONCLUSIONS: Atlantoaxial subluxation

may be a more common finding in persons with type IV EDS than previously

thought. Examination of the cervical spine radiographically should be

considered before administering general anesthesia to these patients.

___________________________

C Nagashima, R Tsuji, S Kubota, and K Tajima

[Atlanto-axial, Atlanto-occipital dislocations, developmental cervical canal

stenosis in the Ehlers-Danlos syndrome (author's transl)]

No Shinkei Geka, April 1, 1981; 9(5): 601-8.

Clinical, biological, histopathological and laboratory data are reported on

a 13-year-old male with atlanto-axial, atlanto-occipital hypermobilities,

cervical canal stenosis, hypoplastic atlas and hypoplastic first rib in the

Ehlers-Danlos syndrome. He developed frequent attacks of sudden tetraplegia

or tetraparesis and numbness below C2 due to trivial neck injuries.

Examination revealed marked hypermobilities of all joints the cutis elastica

(Fig. 1), spastic tetraparesis and fasciculation of the tongue.

Occipito-atlantal hypermobility measured by Wiesel and Rhothmans' method

revealed 5 mm horizontal translation (Fig. 2). Anterior and lateral

dislocations of atlanto-axial joints were marked due to laxicity of the

joint. Posterior decompression of C1, laminotomy of C2,3, occipito-C2

fixation with autogenous iliac " board (3 X 6 cm, rectangular board) graft "

yielded favorable results with 15 months follow-up. To our knowledge, this

is the first patient reported with this unusual combinations.

___________________________

Jill

March 28, 2004

That's OK, Jill, I think I may have what I need, and I'm going to take Dr.

Heffez's phone number (the doctor who did and will be doing Sis-maybe)

for him to call, should he want to. Per and Deb's advice, I will

probably call me dr. and ask for a 2nd opinion as well. Thanks for the

abstracts Jill, I collect all I can! :-) Hope all is well with you!

Love Lana