Re: cerebrospinal fluid leaks?/Lenore & list

[Guest guest]

I see Jill has already posted some info. on this!! I also see that Laxity & I

have found the same medical abstracts, as I posted the same abstract at the end

of Dec.!

A search on PubMed: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi , typing

schievink wi (all lower case, & with a space between surname & initials), shows

he has written many more papers on intracranial hypotension, with mention of

both EDS, & Marfan syndrome. In particular, he seems to have found some that

have this, also have some marfanoid skeletal features, & joint hypermobilty.

A friend sent me another of his papers. This can be seen on Medscape:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi Fig. 1 shows a photo of a person

with a connective tissue disorder, & joint hypermobilty, with their thumb

touching their forearm! Sound familiar?

In this paper, he lists symptoms of intracranial hypotension as being variable,

including headache, neck stiffness, cranial nerve dysfunction, radicular arm

pain, & symptoms of hindbrain herniation i.e. Chiari 1 Malformation. See:

http://www.surgery.missouri.edu/ns/chiari/ Schievink, perhaps, has noted some

with intracranial hypotension have Chiari 1, & a connective tissue disorder, but

hasn't considered this association relevant.

CSF leaks are associated with Chiari 1 Malformation. Chiari 1 Malformation has

already been found to be associated with some connective tissue disorders such

as achondroplasia, acro-osteolysis, Shprintzen-Goldberg syndrome, & in a few

with osteogenesis imperfecta.

Chiari 1 has also been found in some with Marfan syndrome, I have read from

personal correspondence. However, of importance to us EDSers, it has been found

there is an association between EDS, & Chiari. This is being studied, & written

about now. At the Chiari Institute, NY, over 70 patients with Chiari 1

Malformation, have been found to also have EDS, in the last 2 years.

Please note, only some of us with EDS, may also have Chiari 1 Malformation; I

do not know the incidence, only that some with Chiari also have Classical/

Hypermobile/ Vascular EDS. Anyone interested, look at the wacma ( World Arnold

Chiari Malformation Association) site: http://www.wacma.com/ ; consider joining

the e-mail list : http://health.groups.yahoo.com/group/chiari/ , & see how

often EDS is mentioned... on almost a daily basis. Also, if you join, you can

search the archives for Ehlers-Danlos, or EDS.

On a personal note, myself, eldest daughter, & son have HEDS. Our son's

diagnosis has been revised to that of Marfanoid EDS, as he has some skeletal

features of Marfan syndrome. Our son also has Chiari 1 Malformation. Our

youngest daughter is now thought to have had a connective tissue disorder, such

as EDS. She certainly had the cranial nerve dysfunction mentioned above. Due to

the Chiari Malformation she's now thought to have had, her Xth cranial nerves

were compressed, resulting in bilateral abductor vocal cord paralysis.

Hoping this goes some way towards answering you queries, Lenore,

Gail,

North Yorkshire