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I have had reoccurring spontaneous CSF leaks and have recently been diagnosed with EDS hyper mobility type.My brain is sagging they think from the leaks. When I ask if it is possible if I am producing too much fluid, I don’t feel like I am being taken very serious. I just purchased the Driscoll Theory and feel overwhelmed with encouragement. I am 43 now but, over the past 25 years I have repetitively been treated for migraines,tested for MS and autoimmune disorder, chronic fatigue and fibromyalgia. Unfortunately my four children are all showing signs of EDS too. Is there any studies I could participate in for the CSF? I am willing to drive. Is there a Neurosurgeon or Neuro spine specialist anyone recommends. I have been seeing someone at Vanderbilt. I have heard Mayo Clinic has helped EDS patients. Also, any thought on sermorelin or HGH?
Thanks for any direction anyone could point my family.
I’m sorry we don’t have any studies going on currently. I hope the book is helpful — so many of us suffer with high intracranial pressure AND leaks. 🙁
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