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Ehlers-Danlos Syndrome User Group
Cranial Instability
About This Group:

This group is for members with any form of Ehlers-Danlos Syndrome.We have this group to share info and support for each other. Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders characterized by articular hypermobility, skin extensibility and tissue fragility. Individuals with EDS have a defect in their connective tissue. It is this tissue that provides support to many body parts such as the skin, muscles, ligaments and organs. The fragile skin and unstable joints found in EDS are due to faulty collagen. Collagen is a protein that acts like glue in the body adding strength and elasticity to connective tissue.

Founded by somemonkey on September 22, 2009
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Cranial Instability

My daughter was diagnosed with cranial instability and we get to see the spine Dr at the Children's Hospital next week.  She is no longer able to play sports.  Then we wait for the geneticist and cardiologist end of November.  I will post as I learn hoping it will help others.  I am in constant pain from EDS and I hope we can keep my daughter from getting there.
6 Comments
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620923_tn?1405964489

  Thanks for all the updates on Ry and know I am keeping u both in my prayers <3
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1903798_tn?1333908888
Thanks Selma and you in mine <3 you
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1903798_tn?1333908888
Well we met with the spine orthopedic Dr at the childrens hospital today and he said that my daughter will always have pain and laxticity in her neck.  He said it will always pop.  He said there is like 18mm of space in the spinal canal and that the lax ligament is not going to cause paralysis yet she will always have pain and when she makes choices to play sports or ride rides she may pay for it but he thinks it is ok.  He gave her a soft collar to use when she needs it and said that if she plays a sport it should be more rec so she can take it easy if she needs too.  He did send her for a bone density test stating that bones looked light on the X-ray...so we wait for that and geneticist and cardio in November.  I hate to hear my daughter will always have pain yet I didn't expect a different answer.
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620923_tn?1405964489

  Mel....I am so sorry to hear there is not much that can be done...I still feel some sort of exercise like we do post PFD to help the neck  muscles.....they r not so taxing they will sublex the joint....but it may strengthen the muscles so she does not pop out as frequent and have less pain? JMHO
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1903798_tn?1333908888
Thanks Selma:) I think rheum may send her that route now as she was going to before the xrays caused concern on her part.  I am anxious to get bone scan results too.
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620923_tn?1405964489

  Glad to hear that...I really feel that will help.
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