Reoccurring Spontaneous CSF leaks
Posted: 07 April 2016 08:59 AM   [ Ignore ]  
Total Posts:  1
Joined  2016-04-06

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.

Posted: 10 April 2016 07:07 PM   [ Ignore ]   [ # 1 ]  
Total Posts:  1421
Joined  2011-04-19

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. :(


Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese