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.
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.
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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