16 year old daughter who was diag with EDS several years ago. she is very flexible ! She has been complaining of headaches for years and neck pain but nothing done. then she received two concussions in basketball this season and they thought they should do an MRI. Well they found a malformation 6 mm and a pituitary cyst. And of course this came late on Friday so here we sit freaking out about what is next. She is very dizzy on and off. Uncorrdinated for sure. Headache all most daily.
Do you have any advise for parent first dealing with this? And any information about EDS and malformation you can share?
Thank you in advance
she is classic hypermobile - she rates the top number on the mobile scale.
I have to wonder if they did MRI standing her malformation would be more with gravity.
Pack, Hi:) the imaging that needs to be done to check for cranial cervical instability is:
Upright MRIs of cervical spine in flexion and extension.
Ct of cervical spine with 90 degree head rotation to the left, and another with head rotated to the right.
This site has some very informative videos about EDS and CCI.
CSFinfo.org
Scroll to videos
Scroll to metropolitan chapter
Find several videos with EDS and or cranial cervical instability, and the complex Chiari patient.
Your daughter will need special care and considerations with EDS and possible CCI- not all brain surgeons are skilled or knowledgable enough to handle these cases. If there is one piece of advice that outweighs all others…please take the time to find the most experienced and knowledgeable pediatric Chiari specialist. Consider that you may need to travel to another state.
Glad you are here,
Jenn
Thank you all for the information. As I said she has had symptoms for several years they just didn't do a scan until now. I have emailed our genetic MD to see what his recommendation for neurosurgery would be.
We did do neck xrays several years ago and she did have slipping of the vertebrae when moving from flexion and extension.
I will take this all in and wait to see. We live in an area that has a great childerns hospital - that doesn't mean it is the right place. but atleast the right place to start. Our genetic MD is one of the top in the US on EDS.
Again thank you and keep it coming.
we have an appt 5/12 but they are trying to get us in earlier. my daughter is so miserable with headaches.